36
Angelman Today INCLUDING RESOURCES ● RESEARCH ● INSPIRATION digital magazine www.angelmantoday.com Holiday Shopping Guide Inspirational Parent Quotes Epilepsy Awareness Month
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Angelman Today
INCLUDING RESOURCES RESEARCH INSPIRATION
digital magazine
wwwangelmantodaycom
Holiday Shopping
Guide
Inspirational Parent Quotes
Epilepsy
Awareness
Month
Seasonrsquos Greeting
It has been an incredible year for myself
my family and Angelman Today I
absolutely must express my gratitude to
everyone that contributed to Angelman
Today and who continues to help it grow
and wrap around this global community
that has been actively wanting and
needing to unite and share information
and resources as quickly as possible
From the open calls for research
participants to research grants and
inspirational family stories Angelman
Today is the best resource to bring you
answers and help you navigate on this
journey just a little easier
WWWANGELMANTODAYCOM November December 2015
EDITORrsquoS LETTER
November - December
Lizzieangelmantodaycom
Twittercomlizsordia
Twittercomangelmantoday
YouTubecomangelmantoday
In the new year we are adding to our
media outlet with Video We have
created at YouTube channel
subscriptions are free and easily
accessible for everyone We will have
everything from short helpful clips to an
upcoming docu-series and I will be
embedding links to videos in many
article in Angelman Today The Channel
will be easy to share through social
media
I also want to hear from you What
would you like to see or learn Who
would you like to hear from in an
interview Would you like to peek into
the daily lives of other families and find
out what works for them Tell me what
questions you may have and we can
search for answers together Warm Wishes
Lizzie Sordia
Editor - in - Chief
Whatrsquos inside
History of AShelliphelliphelliphelliphelliphelliphelliphelliphellip34 Parent Recommended Bookshelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip35
Angelman and Associated
Foundations Canadian Angelman Syndrome Societyhelliphelliphelliphelliphelliphelliphelliphelliphellip4 Associacao de Sindrome de Angelman de Portugalhelliphelliphelliphelliphellip6 Asociacion del Sindrome de Angelmanhelliphelliphelliphelliphelliphelliphelliphelliphellip11 13 The Charlie Foundationhelliphelliphelliphelliphellip16 The Angelman Syndrome Foundationhelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip20 Angelman Syndrome Alliancehellip26 28
On the cover Melissa age 12
Photo provided by Kat Adams
WWWANGELMANTODAYCOM November December 2015
Editorrsquos Letterhelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip2 Epilepsy Awarenesshelliphellip helliphelliphelliphelliphelliphellip5 Angel Parent Quotehelliphelliphelliphelliphelliphelliphelliphelliphellip7 Angels in Action - Danielehelliphelliphelliphelliphelliphellip8 Angel Parent Quotehelliphelliphelliphelliphelliphelliphellip9 If I Need Help Giveawayhelliphelliphelliphelliphelliphelliphellip10 Happy Holidayshelliphelliphelliphelliphelliphelliphelliphelliphelliphellip12 Angels Week Off Vacation Giveawayhelliphelliphelliphelliphelliphelliphellip14 Holiday Gift Guidehelliphelliphelliphelliphelliphelliphelliphelliphellip17 Angels in Action (Melissa Adams)helliphelliphelliphelliphelliphelliphellip18 2016 Cover Contesthelliphelliphelliphelliphelliphelliphelliphellip19 Angels in Actionhelliphelliphelliphelliphelliphelliphelliphellip25 The History of Angelman Syndrome (Spanish)helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip27 Angel Parent Quotehelliphelliphelliphelliphelliphelliphelliphelliphellip29 Announcementshelliphelliphelliphelliphelliphelliphelliphellip30 Carolinersquos Carthelliphelliphelliphelliphelliphelliphelliphelliphelliphellip31 Stay Connectedhelliphelliphelliphelliphelliphelliphelliphelliphellip33
6
20
10
31
11
Save the Date -- CASS Conference in 2016
VENUE FOR EDMONTON 2016 CONFERENCE SELECTED
Conference Co-chairs Terry Singleton and Kent Fleming advise
newsletter readers that the CASS Board has approved the Double Tree by
Hilton in Edmonton as the venue for the 14th International Conference of
the Canadian Angelman Syndrome Society scheduled for 13 to 16 July
2016
Watch the CASS Newsletter and Website wwwangelmancanadaorg for
continuing updates as planning proceeds Thank you everyone for
helping to get the word out about your Edmonton 2016 Conference
We look forward to welcoming you to an informative and enjoyable
conference
Please stay tuned to the CASS website for News Flash Updates on this
exciting event
wwwangelmancanadaorg
WWWANGELMANTODAYCOM November December 2015
Epilepsy Awareness
November is Epilepsy Awareness Month
Did you know
-1 in 10 people in the US have had a seizure
-The majority of individuals with Angelman Syndrome have Epilepsy
For more info visit
wwwepilepsyfoundationorg
We are running a crowdfunding
project to raise awareness and
funds to the Portuguese Angelman
cause
To donate andor get more
information
httppplcomptencausasum-
km-por-um-sorriso
-----------------
WWWANGELMANTODAYCOM November December 2015
ALWAYS
PRESUME
COMPETENCE
- Linda Rafert Yoakam
Angelman Today
ldquo
ldquo
WWWANGELMANTODAYCOM November December 2015
Angels in Action Celebrating the Abilities of our Angels
By Lyn Barnes
Daniel is 25years old lives in Dubbo NSW
Australia and has the best social life of anyone I
know (including me) He loves to go anywhere and
socialize with anyone He goes ten pin bowling to
the zoo the movies the local pub for lunch and
does Zumba twice a week
His smile is infectious and even though he suffers
daily from chronic pain that smile never leaves his
face making everyone who comes across him smile
as well
My angel Our angel half of Dubbos angel
Angelman Syndrome is something we all want to see cured But it has made me a better person It has taught me more about unconditional love than anything I ever learned in Sunday School or from any love song Were all on a journey to see our children made whole but maybe theyre making us whole in the processldquo
-Regie Hamm
Angelman Today
ldquo
ldquo
ldquoIf I Need Helprdquo and
ldquoAngelman Todayrdquo
care so much about
this community and
the safety of
individuals with
Angelman
Syndrome Now we
have partnered up to
offer you this great
promotion
WWWANGELMANTODAYCOM November December 2015
For 5 off your 1st purchase enter
promo code Angelman Today
See our video interview
WWWANGELMANTODAYCOM November December 2015
Libro Vivir con un Angel
Se trata de un libro escrito por 25 familias de la
Asociacioacuten contando sus propias experiencias
con un Angelman Un libro imprescindible para
comprender los que diariamente las familias
viven
Se trata de un libro escrito por 25
familias de la Asociacioacuten contando sus
propias experiencias con un Angelman
Un libro imprescindible para comprender
los que diariamente las familias viven
Hemos analizado los precios de envio al
extranjero y sale sobre 10euro cada libro El
que este interasado en que le enviemos
un libro al extranjero debera pagarlo con
tarjeta y a 20euro con gastos de envio
incluidos
Libro Vivir con un Angel para envios extranjero
httpwwwangelman-asaorg
Buy your copy
Compre su copia
From all of us at
WWWANGELMANTODAYCOM November December 2015
New Book ldquoLife with an Angel
ldquoWhat is Angelman Syndromerdquo That is usually
the first question we ask the doctor as soon as our
child is diagnosed with this rare disease And
then come the follow-up questions What can we
do Is there a treatment What is their life
expectancy
As soon as we become aware of the fact that
there is no treatment or cure our whole life is
turned upside down Each individual family deals
with the situation the best way they can Some
choose denial However sooner or later they will
try to contact other families in the same situation
who will be able to understand to share their
own experience and offer support in bad times
and celebrate with us the good times
All Angel families would have loved to hear
about the syndrome from a more positive and
closer point of view than that offered by doctors
And so 25 families belonging to the Spanish
Angelman Syndrome Association decided to
write down their personal stories in the hope of
spreading the word on Angelman Syndrome and
especially with the determination to help those
who in the future will come face to face with this
diagnosis
We want them to know that they are not alone
and that there is a life and hope beyond the
syndrome It may be difficult at times but it will
bring moments of total happiness more than we
could have imagined
And most importantly the book is a tribute to
our sons and daughters it is their lives and their
stories we are sharing with the world a story
they arenrsquot able to explain with words
wwwangelman-asaorg
Click here to buy the digital edition
(ebook 3 euros)
Click here to buy the paper edition
(20 euros shipping included)
Order online
The English version will be published soon
WWWANGELMANTODAYCOM November December 2015
The Angel Wings Foundation is bringing you an Angelman
Today Exclusive Vacation Giveaway
Last year the Angel Wings Foundation hit
upon a novel idea How about giving
someone a vacation Someone who could
really use it hellipsomeone who deserves it
hellipsomeone who might actually need it to re-
set their lives Well we did just that and it
worked out better than we couldrsquove ever
imagined
So this year wersquore doing it again One
deserving Angelman family will win an all
expense paid vacation to a music and wine
event in Napa California called ldquoLive In The
Vinyardrdquo
We realize that this isnrsquot scientific research
or new breakthrough therapy techniques or
an awareness campaign All of those things
are certainly vital and crucial to our
collective journey as Angelman parents We
cheer them on and support them
wholeheartedly But we at the Angel Wings
Foundation want to wrap our arms around
the Angelman community and give hugs
wherever and whenever we can We know
how fatiguing constant caregiving can be
We also know how isolating it can be for the
Angel to only see the same people day in and
day out So this ldquoAngel Week Offrdquo is just as
much for the Angels as it is for the parents
We will send in a male and female caregiver
to the familyrsquos home to give the Angel a
week off as well Activities will be planned
every day that donrsquot include mom and dad
After all everybody needs a break from
mom and dad sometimes Besides mom and
dad will be getting a massage or golfing or
horseback riding or drinking wine and
listening to music somewhere in Northern
California
So herersquos what you do hellipwrite an essay (500
words or less) describing your Angelman
journey We all have one and they are all
deserving of a great vacation But we can only
do one at a time right now hellipsorry An all-star
panel of judges will read the entries and
narrow them down to a top 5 The they will re-
read them and ONE family will win the
vacation
The panel consists of people from Make-A-
Wish Best Buddies Special Olympics
Angelman Today and one board member from
the Angel Wings Foundation I donrsquot read
them I just get to call you and tell you yoursquove
won hellipI love that part
All entries must be in by Thanksgiving Day
2015 A winner will be chosen and announced
on Christmas Eve hellipwhat a great Christmas
gift Then we will start making arrangements
for the vacation that will take place in April of
2016 A family member or designated care
giver (in charge) must be present with our
caregivers So keep that part in mind Safety
first
Last yearrsquos winners Mary and Rory were so
moved by the experience they have asked if
they can donate to this yearrsquos winner I think
that speaks for itself They sent in a video to
encourage everyone to enter
Hopefully one day wersquoll be able to do this
many times a year But for this year we canrsquot
wait to read the entries and award some
amazing Angel family a break and a time they
will never forget
We love you all Now get to writing
Email they essay entry to
AngelsWeekOffangelmantodaycom
WWWANGELMANTODAYCOM November December 2015
WWWANGELMANTODAYCOM November December 2015
WOULD YOU LIKE TO CONTRIBUTE
We welcome all Angelman foundations parents care takers physicians and researchers
Email articles and pictures to Lizzieangelmantodaycom
Holiday Gift Guide
Radiance Floor Lamp Night Light Star Projector
Chewbeads Military Dog Tags
Krazy Gears Sensory Weighted Blanket
Senseez Vibrating Pillow Crazy Aaronrsquos Thinking Putty
By Kat Adams Melissa is 12 years old and has Angelman
syndrome UPD She loves to play games and
laugh at her big Brother Jacobs jokes she has a
wicked sense of humor
Melissa won the Child of courage award at an
event in her home town I was very proud that
her fellow citizens chose to recognize her daily
struggles and her massive achievements in this
way
Melissa experiences life in such a way that
every day is an adventure she brings so much
love and happiness into both mine and Jacobs
lives
We have set up a small Foundation in Melissas
name to help support research into a cure for
Angelman syndrome and have had many good
times with our fundraising events taking part
in things such as skydiving and even carrying
Melissa in a sedan chair for 5 miles
Life is never dull with a child like Melissa
Lots of tears along the way but much more
laughter
Angels in Action
Last year was such a success we are doing it again Enter a picture of your loved one
with Angelman Syndrome Get your friends and family voting and they could be on
the January cover of Angelman Today Watch our Facebook page for details
2 16
2014 Cover
2015 Cover
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
The Meerdo Family
Kathryn Matt and Stetson from Chip at AS event
Brian and Drew Fitzgerald annual Blarney CupYaron Werber
Because of you AS families benefit
THANK YOU to our phenomenal supporters this past yearHoly Cow Our AS friends and families have truly impressed our socks off this year Your creativity and dedication is shattering past records and touching lives deeply We at the ASF are humbled and honored to have had independent fundraisers raise more than $100000 for the AS community to date
Check out what just a few of our families have done in 2015
Family Fun Day - Michael Drzewiecki and company
Berto and Minnie with their daughter Pam
Annual Tractor Cruise - Horton Kansas
Because of you AS families benefit
THANK YOU to every individual and organization that played a role in these fundraisers either by spearheading attending or donating to these events
Blarney Cup Paddle Tournament The Fitzgeraldrsquos in Ohio $25450
Meerdo Annual Golf Tournament The Meerdorsquos in Utah $19980
Chip Away at AS Golf Tournament The Elyrsquos in Georgia $11683
Tractor Cruise The Olsenrsquos in Kansas $5350
Cure for the Angels Family Day Angelique Tuthill in New York $4747
Discover Day Camp Christina Polleto in New York $4309
Yaron Werber of Ovid Therapeutics raised $3953 for ASF at the Brooklyn Rock n Roll 12 Marathon
Hauser Junior High School Fundraiser in Westchester New York $3535
Custom Harley Davidson Bike Show Noel Perez and Berto Castellanos in California $3360
Pardi Gras Promotion and Sales Proceeds $2500
Tierrarsquos Event $2435
Family Fun Day Michael Drzewiecki in New York $2338
The Hope Classic at Lower Merion High School in Medinah NY $2342
Run Like A Mother 5k Tiffany Cruikshank in Hinsdale Illinois $1880
Oakland Arsquos Fundraiser in California $1345
7th Street Sportsmen Club Fundraiser in Pennsylvania $1000
THANK YOU to all of the fundraisers who have brought in more than $100000 of donations in 2015 We are very excited at the possibilities and creativity our families will bring in 2016
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Summit4Angelman
Father to young boy with AS climbs Mt Kilimanjaro to raise awareness of ASFrom Kyle himself
Irsquom going to take 8 days to climb up the worldrsquos tallest freestanding mountain to raise awareness for Angelman syndrome and Irsquove realized during my training that I donrsquot think I can do it alone Of course Irsquom going up with a great group looking forward to helping the cause in any way they can but Irsquove found such strength in keeping focused on why Irsquom doing this and every time I ldquopicturerdquo my son Madden it keeps me going when I desperately want to quit or cut corners in training If I keep in mind how my son never quits and overcomes his challenges with a smile I realize this mountain isnrsquot quite as tall I as first thought The point ishellipwithout Madden this climb seems a lot more difficult Which got me thinking what if I have an army of Angels with me every step of the climb Irsquom asking you to send me a picture of your Angel so I can take them to the top of Kilimanjaro with me Each photo and story you send me will provide the strength I need to keep going when the air is thin the weather is cold and my head is pounding I will do everything in my power to get to the top with them My chances will be far better with each person I take up with me If I make it to the Summit I promise they will see the view with me at 19341 feet
Visit Kylersquos personal blog at wwwsummit4angelmancom to find out more about Kylersquos journey
How can you helpbull Share your personal Summit story of accomplishment
on Facebook and Twitter and include the hashtag Summit4Angelman
bull Introduce Angelman syndrome to new peoplehellipKylersquos goal is to raise awareness of AS and he wants to reach 19341mdashthatrsquos one new person for every foot that Mt Kilimanjaro is tall
bull Share a photo of your loved one with AS (send to kyrooneyoutlookcom) for Kyle to take to the top of Mt Kilimanjaro
Looks Whatrsquos Shouted From the Mountaintop Angelman Syndrome Awareness
ASF Communication Training Series
Having challenges with helping your loved one with AS better communicate We have the resource for you In collaboration with several AS communication experts the ASF has created a FREE communication resource that you can access AT ANY TIME the ASF Communication Training Series This Series takes all of the hours of great communication workshops and breaks them down into smaller digestible parts so that you and your individual with AS can reach herhis greatest communication success at any age Using web-based teaching the Series is designed to be sequential and you can join at any time and proceed through the training at your childrsquos pace of learning Click here for more and to access the schedule past webinar recordings and handouts
Meet the experts
ERIN SHELDON M EDErin earned her Masters of Education studying the learning characteristics of students with AS Erin works as an assistive technology consultant with a focus on supporting students with complex learning needs to access the general curriculum in inclusive classrooms She founded the Angelman Literacy
Project an initiative to support families and school teams to foster emergent literacy development in students with AS She presents professional development workshops and webinars across North America and Europe including at conferences such as Closing the Gap and ATIA and has authored manuals book chapters and journal articles
DR CAROLINE MUSSELWHITE CCC-SLPDr Musselwhite is an assistive technology specialist with more than 35 years of experience working with children and adolescents with significant disabilities in a variety of settings including Head Start developmental day programs homes and the public schools Dr
Musselwhite has written a number of textbooks and ldquohow-tordquo books on a range of topics and has also authored many books and software programs for youth with disabilities She has presented thousands of workshops throughout North and South America Australia Europe and Africa and is a founding member and Fellow of the International Society for Augmentative and Alternative Communication
MAUREEN NEVERS MS CCC-SLP LICENSED SPEECH-LANGUAGE PATHOLOGIST AUGMENTATIVE COMMUNICATION SPECIALISTMaureen earned a BS in Communication Disorders from the University of Massachusetts at Amherst in 1991 then earned a MS in Speech-Language
Pathology from the University of Vermont in 1993 Her graduate work included participation in a comprehensive training program in AAC She worked for Easter Seals in Massachusetts for eleven years before joining the Center on Disability and Community Inclusion at the University of Vermont eleven years ago She currently works as an Augmentative Communication Specialist with the Vermont I-Team where she is part of an interdisciplinary team that consults with school teams across the state to support individuals with complex communication needs
Communication training you can understand and use
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
MARY-LOUISE BERTRAMMary-Louise Bertram is a qualified Early Childhood Teacher from Perth Western Australia with special qualifications and training in the areas of communication sensory processing and literacy supports for children with complex disabilities Mary-Louise became involved with the AS community in 2007 while
teaching a class of six children four of whom had AS (all Del +) Since then Mary-Louise has worked with people with AS of all ages across Western Australia in the first statewide comprehensive AS-specific communication intervention of its kind She has supported families across the globe to advocate for their childrsquos right to high-quality communication and education intervention Mary-Louise currently works in private practice supporting individuals with complex disabilities (and their families) with communication and literacy
Families are also encouraged to support each other and share tips via the Seriesrsquo private ASF Communication Training Series Facebook group
Twenty years ago we never would have imagined that so many generous people like you would open their hearts to help those affected by AS Your generosity eases the financial and emotional burden on families by supporting our family resource program and has helped our researchers make significant breakthroughs in treatments and potential cures for AS Without you there would be no us We are forever grateful for your support
Click here to make a contribution to the ASFrsquos end-of-year appeal All donations are 100 tax deductible per IRS regulations
Itrsquos ALL because of YOU
WWWANGELMANTODAYCOM November December 2015
By Cass Gamero
My sons name is Alexander and he was
recently diagnosed in July 2015 Hes only
18 months old and is loved by all Anyone
who meets him cant help but be
memorized by his long eye lashes amp
beaming smile When you see him you
cant help but smile My son also has some
vision problems but is getting better He
loves his toy keys and could recognize his
bottle from anywhere Hes lovable
friendly joyful and bright
Angels in Action Celebrating the Abilities of our Angels
Gareth Edwards (Star Wars Director) acknowledges
The force is strong in the Angelman Alliance
It is often said that parents will do anything for their children A rare
disease called Angelman Syndrome is proving testimony to this fact
Driven by an unstoppable love for their children parent organisations
from 15 countries have formed an alliance to work together to progress
research that may help their children to speak run and live life to their
full potential As Gareth Edwards patron of the UK Charity that hosted
this yearsrsquo conference in Liverpool England said during his speech at
the conference ldquoAngels go further and beyondrdquo
With the support of ISIS pharmaceuticals recent findings by professor Art Beaudet (USA) are expected to
progress to clinical trials Results from other researchers in collaboration with pharmaceutical companies
also have promising results to improve the quality of life for children amp adults with Angelman Syndrome
Initially having to overcome language barriers cultural differences and different legal systems the parent
organisations created an international Alliance on Angelman Syndrome (ASA) to drive research forward
pooling resources and funds In the first two years over half a million eurorsquos (550000-) was raised with
more parent organisations worldwide continuing to join The parent organisations met this year in
Liverpool during the 50th anniversary of Angelman Syndrome At this conference representatives came
from England Ireland Belgium Netherlands Germany Austria France Italy Portugal Japan Israel
Hungary Poland Finland and Switzerland
As professor Ype Elgersma (NL) said ldquoThese are very exciting times because we might actually have the
possibility to reverse a severe genetic diseaserdquo Therefore the need to get things going is stronger than ever
within the Alliance and the need for more funding is evident Because in the end every parent wants their
child to be as happy and healthy as possible
Everything we do we do for our Angels wwwangelmanallianceor g
For information about the Alliance the research and other questions you can contact Betty Willemsen
bettywillemsenninafoundationeu
Dr Harry Angelman
1915 ndash 1996
El Dr Harry Angelman fue un meacutedico Ingleacutes quien
identificoacute lo que hoy en diacutea se llama Siacutendrome de
Angelman
Nacioacute en Birkenhead Inglaterra Le fascinaba el idioma
y la cultura de Italia
El fue el primero quien observoacute treacutes nintildeos no
relacionados quienes demostraban siacutentomas similares ndash
atrasos severos intelectuales un modo de andar que era
espasmoacutedico y riacutegido ausencia del hablar
convulsiones y una disposicioacuten contento
Luego duranted unas vacaciones en Italia descubrioacute
una pintura llamada ldquoUn Nintildeo con una Marionetardquo
creado por el artista del Renascimiento Giovanni
Francesco Caroto en el museo Castelvecchio en
Verona La pintura le hizo pensar en los nintildeos que eran
sus pacientes y le condujo a publicar un artiacuteculo
profesional en el antildeo 1965 que describiacutea lo que el
llamaba ldquoNintildeos Marionetasrdquo En aquel momento la
importancia de su artiacuteculo no fue reconocido como algo
importante
No pasoacute nada mas hasta Charles A Williams y Jaime L
Frias del departamento de Pediacuteatra Divisiacuteon de
Geneacutetica de la Universidad de Florida Colegio de
Medicina de Gainesville Florida sometieron un
artiacuteculo a la Revista Americana de Geneacutetica Meacutedica
explicando estudios de seacuteis pacientes comparando sus
datos con los de informes previos ndash incluyendo atrasos
intelectuales severos el andar como un ldquomarionetardquo
anormalidades cranio-faciales y espisodios frecuentes
de risas De repente se notoacute que eso era mucho maacutes
comuacuten de lo que anteriormente se creiacutea Ellos
propusieron ponerle el nombre de Siacutendrome de
Angelman en honor del Dr Harry Angelman
La Historia del Siacutendrome de Angelman (Spanish Translation)
Angelman Today
Gareth Edwards (Directeur de Star Wars) lrsquoaffirme la Force est avec lrsquoAngelman Syndrome Alliance (ASA)
On dit souvent que les parents feraient tout pour leurs enfants et crsquoest ce qui se veacuterifie agrave lrsquooccasion drsquoune maladie rare appeleacutee le syndrome drsquoAngelman Animeacutees drsquoun amour infini pour leurs enfants des organisations parentales de 15 pays ont formeacute une alliance dans le but de faire avancer la recherche qui permettra agrave ces enfants de parler courir et vivre leur vie pleinement Comme lrsquoaffirmait dans son intervention Gareth Edwards soutien de lrsquoassociation de bienfaisance anglaise qui accueillait cette anneacutee la confeacuterence internationale agrave Liverpool laquo Les Anges vont plus loin et au-delagrave raquo
De reacutecentes deacutecouvertes dues par le Professeur Art Beaudet (USA) avec le soutien des laboratoires pharmaceutiques ISIS vont conduire agrave des essais cliniques Drsquoautres chercheurs soutenus par des socieacuteteacutes pharmaceutiques ont obtenu des reacutesultats prometteurs pour ameacuteliorer la qualiteacute de vie des enfants et des adultes atteints du syndrome drsquoAngelman
Surmontant les obstacles dus aux langues aux diffeacuterences culturelles et leacutegales les organisations parentales ont creacuteeacute lrsquoAlliance du Syndrome drsquoAngelman (ASA) visant agrave faire progresser la recherche et agrave mettre en commun les ressources et les financements Dans les deux premiegraveres anneacutees 550 000 euro ont eacuteteacute reacuteunis et drsquoautres organisations venues du monde entier souhaitent srsquoy associer Cette anneacutee les organisations de parents se sont rencontreacutees agrave Liverpool dans le cadre du 50egraveme anniversaire de lrsquoidentification du syndrome Eacutetaient repreacutesenteacutes lrsquoAngleterre lrsquoIrlande la Belgique les Pays Bas lrsquoAllemagne lrsquoAutriche la France lrsquoItalie le Portugal le Japon Israeumll la Hongrie la Pologne la Finlande et la Suisse
Comme le disait le Professeur Ype Elgersma (NL) laquo Nous vivons des temps prometteurs car nous sommes en mesure drsquoinverser une grave maladie geacuteneacutetique raquo Crsquoest pourquoi il est de plus en plus neacutecessaire de renforcer notre action et de trouver drsquoautres financements Parce qursquoil est clair que chaque parent souhaite que son enfant vive heureux et en bonne santeacute
Tout ce que nous faisons nous le faisons pour nos Anges wwwangelmanallianceorg
Pour toute information sur lrsquoAlliance la recherche et drsquoautres questions vous pouvez contacter Betty Willemsen bettywillemsenninafoundationeu
Angelman Today
God only gives us what He is willing to walk us through
-Joell Gingrich Ketcham
ldquo ldquo
ldquo
Adding youtube video
platform to Angelman Today
Video content will include bull Interviews
bull Product Reviews
bull Latest Research
bull How To videos
bull Parent tips and interviews
bull Much more
Email Lizzieangelmantodaycom if you
would like to participate
Announcements
We are expanding Angelman Today to include a new
platform of video media
To do this we will be making some changes that will
include the publishing schedule for the online digital
magazine Starting in January 2016 we will start
publishing Angelman Today quarterly 4 information-
packed editions a year
Subscriptions of the online magazine will remain
FREE
Subscribing to the YouTube channel is also FREE
We welcome all Angelman foundations parents
care takers physicians and researchers to
contribute Deadlines are
bull December 10
bull March 10
bull June 10
bull September 10
Show your support for Angelman Today and subscribe
WWWANGELMANTODAYCOM November December 2015
Toby B Kroger in Kentucky Scotty at Wegmans in NY
There are many challenges that come along with being
a caretaker of an individual with special needs
including a task that for many may be simple a trip
that we all must do regularly which is shop for
groceries
The best inventions are usually created from a persons
desire to satisfy a need or to solve a problem they
encounter in their own life One set of parents did just
that Drew Ann and David Long have three children
Caroline is their middle child she was diagnosed with
Rett syndrome The challenge came when Drew Ann
went grocery shopping with her kids She had a
Making Shopping A Little
Easier This Holiday Season helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
toddler and Caroline in her wheelchair The problem
presented itself as in the form of a question ldquoHow
do you push a wheelchair and a shopping cartrdquo
Drew Ann had the answer She was able to vision the
cart and sat in her car and sketched it out on paper
She knew she was not the first to have this dilemma
nor would she be the last
Carolinersquos Carts can now be found at some select
retailers You can visit wwwcarolinescartcom to
find a location near you
Parents we need your help We at Angelman Today
are calling for action There are not enough stores
with Carolinersquos carts Parents it is up to us We are
the ones that need them so we have to be the ones to
request them at our local retailers Some stores like
Target Shoprite Publix Lucky and Wegmans are
starting to have them available If they are not
currently at a store near you just ask the manager
You will be helping not only your family but the
many other families that may not yet even know this
helpful cart exists
WWWANGELMANTODAYCOM November December 2015
Thank you A big thanks to all of the contributors that help bring you Angelman Today
Angelman Today Supporters
If I Need Help ndash wwwifineedhelporg
All of the Angelman and
Associated
Foundations
across the globe
Additional Contributors
Kat Adams
Maria Cano Moraleda
Erin Bates
Angelman Today is a lifestyle guide to achieving better health for individuals with Angelman Syndrome and their families It is written with your needs in mind but is not a substitute for consulting with your physician or other health care providers The publisher and authors are not responsible for any adverse effects or consequences resulting from the use of the suggestions products or procedures that appear on this website or online magazine All matters regarding your health should be supervised by a licensed health care physician Copyright 2014 Angelman Today LLC All rights reserved worldwide
CONTRIBUTORS
Marilyn Kennedy
Assistant Editor Marilynangelmantodaycom
Sybille Kraft Bellamy
Parent Expert in Nutrition
And LGIT diet FacebookcomAngelmanSyndromeDiet
STAY CONNECTED ON THE GO
DOWNLOAD THE NEW ISSUU APP TODAY ON GOOGLE PLAY
AND NOW IN THE APP STORE
Dr Harry Angelman
1915 ndash 1996
Dr Harry Angelman was an English physician
who identified what is now known as Angelman
Syndrome
He first observed three children who were not
related but showed similar symptoms of severe
intellectual delay stiff jerky gait lack of speech
seizures motor disorders and happy demeanors
Although Dr Angelman was born in Birkenhead
England he was an enthusiast for the language
and country of Italy And it was while vacationing
in Italy he observed an oil painting called A Boy
with a Puppet by the renaissance artist Giovanni
Francesco Caroto at the Castelvecchio museum in
Verona Reminded of the children hersquod observed
Dr Angelman published a paper in 1965 that
described what he called ldquopuppet childrenrdquo At
this time his paper was not immediately
recognized as important
It wasnrsquot until 1982 when Charles A Williams
and Jaime L Frias of the department of Pediatrics
Division of Genetics University of Florida
College of Medicine Gainesville submitted a
paper to the American Journal of Medical
Genetics reporting studies of six patients and
comparing their data to those from previous
reports - severe developmental delay ldquopuppet-
likerdquo gait craniofacial abnormalities and frequent
episodes of laughter- that it became clear the
syndrome was more common than previously
thought They proposed the name of this disorder
be changed to Angelman Syndrome
The History of Angelman Syndrome
Angelman Today
Books Recommended by Parents
Connect with us on
Thanks for your support
Please Share Angelman Today
wwwangelmantodaycom
Seasonrsquos Greeting
It has been an incredible year for myself
my family and Angelman Today I
absolutely must express my gratitude to
everyone that contributed to Angelman
Today and who continues to help it grow
and wrap around this global community
that has been actively wanting and
needing to unite and share information
and resources as quickly as possible
From the open calls for research
participants to research grants and
inspirational family stories Angelman
Today is the best resource to bring you
answers and help you navigate on this
journey just a little easier
WWWANGELMANTODAYCOM November December 2015
EDITORrsquoS LETTER
November - December
Lizzieangelmantodaycom
Twittercomlizsordia
Twittercomangelmantoday
YouTubecomangelmantoday
In the new year we are adding to our
media outlet with Video We have
created at YouTube channel
subscriptions are free and easily
accessible for everyone We will have
everything from short helpful clips to an
upcoming docu-series and I will be
embedding links to videos in many
article in Angelman Today The Channel
will be easy to share through social
media
I also want to hear from you What
would you like to see or learn Who
would you like to hear from in an
interview Would you like to peek into
the daily lives of other families and find
out what works for them Tell me what
questions you may have and we can
search for answers together Warm Wishes
Lizzie Sordia
Editor - in - Chief
Whatrsquos inside
History of AShelliphelliphelliphelliphelliphelliphelliphelliphellip34 Parent Recommended Bookshelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip35
Angelman and Associated
Foundations Canadian Angelman Syndrome Societyhelliphelliphelliphelliphelliphelliphelliphelliphellip4 Associacao de Sindrome de Angelman de Portugalhelliphelliphelliphelliphellip6 Asociacion del Sindrome de Angelmanhelliphelliphelliphelliphelliphelliphelliphelliphellip11 13 The Charlie Foundationhelliphelliphelliphelliphellip16 The Angelman Syndrome Foundationhelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip20 Angelman Syndrome Alliancehellip26 28
On the cover Melissa age 12
Photo provided by Kat Adams
WWWANGELMANTODAYCOM November December 2015
Editorrsquos Letterhelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip2 Epilepsy Awarenesshelliphellip helliphelliphelliphelliphelliphellip5 Angel Parent Quotehelliphelliphelliphelliphelliphelliphelliphelliphellip7 Angels in Action - Danielehelliphelliphelliphelliphelliphellip8 Angel Parent Quotehelliphelliphelliphelliphelliphelliphellip9 If I Need Help Giveawayhelliphelliphelliphelliphelliphelliphellip10 Happy Holidayshelliphelliphelliphelliphelliphelliphelliphelliphelliphellip12 Angels Week Off Vacation Giveawayhelliphelliphelliphelliphelliphelliphellip14 Holiday Gift Guidehelliphelliphelliphelliphelliphelliphelliphelliphellip17 Angels in Action (Melissa Adams)helliphelliphelliphelliphelliphelliphellip18 2016 Cover Contesthelliphelliphelliphelliphelliphelliphelliphellip19 Angels in Actionhelliphelliphelliphelliphelliphelliphelliphellip25 The History of Angelman Syndrome (Spanish)helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip27 Angel Parent Quotehelliphelliphelliphelliphelliphelliphelliphelliphellip29 Announcementshelliphelliphelliphelliphelliphelliphelliphellip30 Carolinersquos Carthelliphelliphelliphelliphelliphelliphelliphelliphelliphellip31 Stay Connectedhelliphelliphelliphelliphelliphelliphelliphelliphellip33
6
20
10
31
11
Save the Date -- CASS Conference in 2016
VENUE FOR EDMONTON 2016 CONFERENCE SELECTED
Conference Co-chairs Terry Singleton and Kent Fleming advise
newsletter readers that the CASS Board has approved the Double Tree by
Hilton in Edmonton as the venue for the 14th International Conference of
the Canadian Angelman Syndrome Society scheduled for 13 to 16 July
2016
Watch the CASS Newsletter and Website wwwangelmancanadaorg for
continuing updates as planning proceeds Thank you everyone for
helping to get the word out about your Edmonton 2016 Conference
We look forward to welcoming you to an informative and enjoyable
conference
Please stay tuned to the CASS website for News Flash Updates on this
exciting event
wwwangelmancanadaorg
WWWANGELMANTODAYCOM November December 2015
Epilepsy Awareness
November is Epilepsy Awareness Month
Did you know
-1 in 10 people in the US have had a seizure
-The majority of individuals with Angelman Syndrome have Epilepsy
For more info visit
wwwepilepsyfoundationorg
We are running a crowdfunding
project to raise awareness and
funds to the Portuguese Angelman
cause
To donate andor get more
information
httppplcomptencausasum-
km-por-um-sorriso
-----------------
WWWANGELMANTODAYCOM November December 2015
ALWAYS
PRESUME
COMPETENCE
- Linda Rafert Yoakam
Angelman Today
ldquo
ldquo
WWWANGELMANTODAYCOM November December 2015
Angels in Action Celebrating the Abilities of our Angels
By Lyn Barnes
Daniel is 25years old lives in Dubbo NSW
Australia and has the best social life of anyone I
know (including me) He loves to go anywhere and
socialize with anyone He goes ten pin bowling to
the zoo the movies the local pub for lunch and
does Zumba twice a week
His smile is infectious and even though he suffers
daily from chronic pain that smile never leaves his
face making everyone who comes across him smile
as well
My angel Our angel half of Dubbos angel
Angelman Syndrome is something we all want to see cured But it has made me a better person It has taught me more about unconditional love than anything I ever learned in Sunday School or from any love song Were all on a journey to see our children made whole but maybe theyre making us whole in the processldquo
-Regie Hamm
Angelman Today
ldquo
ldquo
ldquoIf I Need Helprdquo and
ldquoAngelman Todayrdquo
care so much about
this community and
the safety of
individuals with
Angelman
Syndrome Now we
have partnered up to
offer you this great
promotion
WWWANGELMANTODAYCOM November December 2015
For 5 off your 1st purchase enter
promo code Angelman Today
See our video interview
WWWANGELMANTODAYCOM November December 2015
Libro Vivir con un Angel
Se trata de un libro escrito por 25 familias de la
Asociacioacuten contando sus propias experiencias
con un Angelman Un libro imprescindible para
comprender los que diariamente las familias
viven
Se trata de un libro escrito por 25
familias de la Asociacioacuten contando sus
propias experiencias con un Angelman
Un libro imprescindible para comprender
los que diariamente las familias viven
Hemos analizado los precios de envio al
extranjero y sale sobre 10euro cada libro El
que este interasado en que le enviemos
un libro al extranjero debera pagarlo con
tarjeta y a 20euro con gastos de envio
incluidos
Libro Vivir con un Angel para envios extranjero
httpwwwangelman-asaorg
Buy your copy
Compre su copia
From all of us at
WWWANGELMANTODAYCOM November December 2015
New Book ldquoLife with an Angel
ldquoWhat is Angelman Syndromerdquo That is usually
the first question we ask the doctor as soon as our
child is diagnosed with this rare disease And
then come the follow-up questions What can we
do Is there a treatment What is their life
expectancy
As soon as we become aware of the fact that
there is no treatment or cure our whole life is
turned upside down Each individual family deals
with the situation the best way they can Some
choose denial However sooner or later they will
try to contact other families in the same situation
who will be able to understand to share their
own experience and offer support in bad times
and celebrate with us the good times
All Angel families would have loved to hear
about the syndrome from a more positive and
closer point of view than that offered by doctors
And so 25 families belonging to the Spanish
Angelman Syndrome Association decided to
write down their personal stories in the hope of
spreading the word on Angelman Syndrome and
especially with the determination to help those
who in the future will come face to face with this
diagnosis
We want them to know that they are not alone
and that there is a life and hope beyond the
syndrome It may be difficult at times but it will
bring moments of total happiness more than we
could have imagined
And most importantly the book is a tribute to
our sons and daughters it is their lives and their
stories we are sharing with the world a story
they arenrsquot able to explain with words
wwwangelman-asaorg
Click here to buy the digital edition
(ebook 3 euros)
Click here to buy the paper edition
(20 euros shipping included)
Order online
The English version will be published soon
WWWANGELMANTODAYCOM November December 2015
The Angel Wings Foundation is bringing you an Angelman
Today Exclusive Vacation Giveaway
Last year the Angel Wings Foundation hit
upon a novel idea How about giving
someone a vacation Someone who could
really use it hellipsomeone who deserves it
hellipsomeone who might actually need it to re-
set their lives Well we did just that and it
worked out better than we couldrsquove ever
imagined
So this year wersquore doing it again One
deserving Angelman family will win an all
expense paid vacation to a music and wine
event in Napa California called ldquoLive In The
Vinyardrdquo
We realize that this isnrsquot scientific research
or new breakthrough therapy techniques or
an awareness campaign All of those things
are certainly vital and crucial to our
collective journey as Angelman parents We
cheer them on and support them
wholeheartedly But we at the Angel Wings
Foundation want to wrap our arms around
the Angelman community and give hugs
wherever and whenever we can We know
how fatiguing constant caregiving can be
We also know how isolating it can be for the
Angel to only see the same people day in and
day out So this ldquoAngel Week Offrdquo is just as
much for the Angels as it is for the parents
We will send in a male and female caregiver
to the familyrsquos home to give the Angel a
week off as well Activities will be planned
every day that donrsquot include mom and dad
After all everybody needs a break from
mom and dad sometimes Besides mom and
dad will be getting a massage or golfing or
horseback riding or drinking wine and
listening to music somewhere in Northern
California
So herersquos what you do hellipwrite an essay (500
words or less) describing your Angelman
journey We all have one and they are all
deserving of a great vacation But we can only
do one at a time right now hellipsorry An all-star
panel of judges will read the entries and
narrow them down to a top 5 The they will re-
read them and ONE family will win the
vacation
The panel consists of people from Make-A-
Wish Best Buddies Special Olympics
Angelman Today and one board member from
the Angel Wings Foundation I donrsquot read
them I just get to call you and tell you yoursquove
won hellipI love that part
All entries must be in by Thanksgiving Day
2015 A winner will be chosen and announced
on Christmas Eve hellipwhat a great Christmas
gift Then we will start making arrangements
for the vacation that will take place in April of
2016 A family member or designated care
giver (in charge) must be present with our
caregivers So keep that part in mind Safety
first
Last yearrsquos winners Mary and Rory were so
moved by the experience they have asked if
they can donate to this yearrsquos winner I think
that speaks for itself They sent in a video to
encourage everyone to enter
Hopefully one day wersquoll be able to do this
many times a year But for this year we canrsquot
wait to read the entries and award some
amazing Angel family a break and a time they
will never forget
We love you all Now get to writing
Email they essay entry to
AngelsWeekOffangelmantodaycom
WWWANGELMANTODAYCOM November December 2015
WWWANGELMANTODAYCOM November December 2015
WOULD YOU LIKE TO CONTRIBUTE
We welcome all Angelman foundations parents care takers physicians and researchers
Email articles and pictures to Lizzieangelmantodaycom
Holiday Gift Guide
Radiance Floor Lamp Night Light Star Projector
Chewbeads Military Dog Tags
Krazy Gears Sensory Weighted Blanket
Senseez Vibrating Pillow Crazy Aaronrsquos Thinking Putty
By Kat Adams Melissa is 12 years old and has Angelman
syndrome UPD She loves to play games and
laugh at her big Brother Jacobs jokes she has a
wicked sense of humor
Melissa won the Child of courage award at an
event in her home town I was very proud that
her fellow citizens chose to recognize her daily
struggles and her massive achievements in this
way
Melissa experiences life in such a way that
every day is an adventure she brings so much
love and happiness into both mine and Jacobs
lives
We have set up a small Foundation in Melissas
name to help support research into a cure for
Angelman syndrome and have had many good
times with our fundraising events taking part
in things such as skydiving and even carrying
Melissa in a sedan chair for 5 miles
Life is never dull with a child like Melissa
Lots of tears along the way but much more
laughter
Angels in Action
Last year was such a success we are doing it again Enter a picture of your loved one
with Angelman Syndrome Get your friends and family voting and they could be on
the January cover of Angelman Today Watch our Facebook page for details
2 16
2014 Cover
2015 Cover
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
The Meerdo Family
Kathryn Matt and Stetson from Chip at AS event
Brian and Drew Fitzgerald annual Blarney CupYaron Werber
Because of you AS families benefit
THANK YOU to our phenomenal supporters this past yearHoly Cow Our AS friends and families have truly impressed our socks off this year Your creativity and dedication is shattering past records and touching lives deeply We at the ASF are humbled and honored to have had independent fundraisers raise more than $100000 for the AS community to date
Check out what just a few of our families have done in 2015
Family Fun Day - Michael Drzewiecki and company
Berto and Minnie with their daughter Pam
Annual Tractor Cruise - Horton Kansas
Because of you AS families benefit
THANK YOU to every individual and organization that played a role in these fundraisers either by spearheading attending or donating to these events
Blarney Cup Paddle Tournament The Fitzgeraldrsquos in Ohio $25450
Meerdo Annual Golf Tournament The Meerdorsquos in Utah $19980
Chip Away at AS Golf Tournament The Elyrsquos in Georgia $11683
Tractor Cruise The Olsenrsquos in Kansas $5350
Cure for the Angels Family Day Angelique Tuthill in New York $4747
Discover Day Camp Christina Polleto in New York $4309
Yaron Werber of Ovid Therapeutics raised $3953 for ASF at the Brooklyn Rock n Roll 12 Marathon
Hauser Junior High School Fundraiser in Westchester New York $3535
Custom Harley Davidson Bike Show Noel Perez and Berto Castellanos in California $3360
Pardi Gras Promotion and Sales Proceeds $2500
Tierrarsquos Event $2435
Family Fun Day Michael Drzewiecki in New York $2338
The Hope Classic at Lower Merion High School in Medinah NY $2342
Run Like A Mother 5k Tiffany Cruikshank in Hinsdale Illinois $1880
Oakland Arsquos Fundraiser in California $1345
7th Street Sportsmen Club Fundraiser in Pennsylvania $1000
THANK YOU to all of the fundraisers who have brought in more than $100000 of donations in 2015 We are very excited at the possibilities and creativity our families will bring in 2016
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Summit4Angelman
Father to young boy with AS climbs Mt Kilimanjaro to raise awareness of ASFrom Kyle himself
Irsquom going to take 8 days to climb up the worldrsquos tallest freestanding mountain to raise awareness for Angelman syndrome and Irsquove realized during my training that I donrsquot think I can do it alone Of course Irsquom going up with a great group looking forward to helping the cause in any way they can but Irsquove found such strength in keeping focused on why Irsquom doing this and every time I ldquopicturerdquo my son Madden it keeps me going when I desperately want to quit or cut corners in training If I keep in mind how my son never quits and overcomes his challenges with a smile I realize this mountain isnrsquot quite as tall I as first thought The point ishellipwithout Madden this climb seems a lot more difficult Which got me thinking what if I have an army of Angels with me every step of the climb Irsquom asking you to send me a picture of your Angel so I can take them to the top of Kilimanjaro with me Each photo and story you send me will provide the strength I need to keep going when the air is thin the weather is cold and my head is pounding I will do everything in my power to get to the top with them My chances will be far better with each person I take up with me If I make it to the Summit I promise they will see the view with me at 19341 feet
Visit Kylersquos personal blog at wwwsummit4angelmancom to find out more about Kylersquos journey
How can you helpbull Share your personal Summit story of accomplishment
on Facebook and Twitter and include the hashtag Summit4Angelman
bull Introduce Angelman syndrome to new peoplehellipKylersquos goal is to raise awareness of AS and he wants to reach 19341mdashthatrsquos one new person for every foot that Mt Kilimanjaro is tall
bull Share a photo of your loved one with AS (send to kyrooneyoutlookcom) for Kyle to take to the top of Mt Kilimanjaro
Looks Whatrsquos Shouted From the Mountaintop Angelman Syndrome Awareness
ASF Communication Training Series
Having challenges with helping your loved one with AS better communicate We have the resource for you In collaboration with several AS communication experts the ASF has created a FREE communication resource that you can access AT ANY TIME the ASF Communication Training Series This Series takes all of the hours of great communication workshops and breaks them down into smaller digestible parts so that you and your individual with AS can reach herhis greatest communication success at any age Using web-based teaching the Series is designed to be sequential and you can join at any time and proceed through the training at your childrsquos pace of learning Click here for more and to access the schedule past webinar recordings and handouts
Meet the experts
ERIN SHELDON M EDErin earned her Masters of Education studying the learning characteristics of students with AS Erin works as an assistive technology consultant with a focus on supporting students with complex learning needs to access the general curriculum in inclusive classrooms She founded the Angelman Literacy
Project an initiative to support families and school teams to foster emergent literacy development in students with AS She presents professional development workshops and webinars across North America and Europe including at conferences such as Closing the Gap and ATIA and has authored manuals book chapters and journal articles
DR CAROLINE MUSSELWHITE CCC-SLPDr Musselwhite is an assistive technology specialist with more than 35 years of experience working with children and adolescents with significant disabilities in a variety of settings including Head Start developmental day programs homes and the public schools Dr
Musselwhite has written a number of textbooks and ldquohow-tordquo books on a range of topics and has also authored many books and software programs for youth with disabilities She has presented thousands of workshops throughout North and South America Australia Europe and Africa and is a founding member and Fellow of the International Society for Augmentative and Alternative Communication
MAUREEN NEVERS MS CCC-SLP LICENSED SPEECH-LANGUAGE PATHOLOGIST AUGMENTATIVE COMMUNICATION SPECIALISTMaureen earned a BS in Communication Disorders from the University of Massachusetts at Amherst in 1991 then earned a MS in Speech-Language
Pathology from the University of Vermont in 1993 Her graduate work included participation in a comprehensive training program in AAC She worked for Easter Seals in Massachusetts for eleven years before joining the Center on Disability and Community Inclusion at the University of Vermont eleven years ago She currently works as an Augmentative Communication Specialist with the Vermont I-Team where she is part of an interdisciplinary team that consults with school teams across the state to support individuals with complex communication needs
Communication training you can understand and use
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
MARY-LOUISE BERTRAMMary-Louise Bertram is a qualified Early Childhood Teacher from Perth Western Australia with special qualifications and training in the areas of communication sensory processing and literacy supports for children with complex disabilities Mary-Louise became involved with the AS community in 2007 while
teaching a class of six children four of whom had AS (all Del +) Since then Mary-Louise has worked with people with AS of all ages across Western Australia in the first statewide comprehensive AS-specific communication intervention of its kind She has supported families across the globe to advocate for their childrsquos right to high-quality communication and education intervention Mary-Louise currently works in private practice supporting individuals with complex disabilities (and their families) with communication and literacy
Families are also encouraged to support each other and share tips via the Seriesrsquo private ASF Communication Training Series Facebook group
Twenty years ago we never would have imagined that so many generous people like you would open their hearts to help those affected by AS Your generosity eases the financial and emotional burden on families by supporting our family resource program and has helped our researchers make significant breakthroughs in treatments and potential cures for AS Without you there would be no us We are forever grateful for your support
Click here to make a contribution to the ASFrsquos end-of-year appeal All donations are 100 tax deductible per IRS regulations
Itrsquos ALL because of YOU
WWWANGELMANTODAYCOM November December 2015
By Cass Gamero
My sons name is Alexander and he was
recently diagnosed in July 2015 Hes only
18 months old and is loved by all Anyone
who meets him cant help but be
memorized by his long eye lashes amp
beaming smile When you see him you
cant help but smile My son also has some
vision problems but is getting better He
loves his toy keys and could recognize his
bottle from anywhere Hes lovable
friendly joyful and bright
Angels in Action Celebrating the Abilities of our Angels
Gareth Edwards (Star Wars Director) acknowledges
The force is strong in the Angelman Alliance
It is often said that parents will do anything for their children A rare
disease called Angelman Syndrome is proving testimony to this fact
Driven by an unstoppable love for their children parent organisations
from 15 countries have formed an alliance to work together to progress
research that may help their children to speak run and live life to their
full potential As Gareth Edwards patron of the UK Charity that hosted
this yearsrsquo conference in Liverpool England said during his speech at
the conference ldquoAngels go further and beyondrdquo
With the support of ISIS pharmaceuticals recent findings by professor Art Beaudet (USA) are expected to
progress to clinical trials Results from other researchers in collaboration with pharmaceutical companies
also have promising results to improve the quality of life for children amp adults with Angelman Syndrome
Initially having to overcome language barriers cultural differences and different legal systems the parent
organisations created an international Alliance on Angelman Syndrome (ASA) to drive research forward
pooling resources and funds In the first two years over half a million eurorsquos (550000-) was raised with
more parent organisations worldwide continuing to join The parent organisations met this year in
Liverpool during the 50th anniversary of Angelman Syndrome At this conference representatives came
from England Ireland Belgium Netherlands Germany Austria France Italy Portugal Japan Israel
Hungary Poland Finland and Switzerland
As professor Ype Elgersma (NL) said ldquoThese are very exciting times because we might actually have the
possibility to reverse a severe genetic diseaserdquo Therefore the need to get things going is stronger than ever
within the Alliance and the need for more funding is evident Because in the end every parent wants their
child to be as happy and healthy as possible
Everything we do we do for our Angels wwwangelmanallianceor g
For information about the Alliance the research and other questions you can contact Betty Willemsen
bettywillemsenninafoundationeu
Dr Harry Angelman
1915 ndash 1996
El Dr Harry Angelman fue un meacutedico Ingleacutes quien
identificoacute lo que hoy en diacutea se llama Siacutendrome de
Angelman
Nacioacute en Birkenhead Inglaterra Le fascinaba el idioma
y la cultura de Italia
El fue el primero quien observoacute treacutes nintildeos no
relacionados quienes demostraban siacutentomas similares ndash
atrasos severos intelectuales un modo de andar que era
espasmoacutedico y riacutegido ausencia del hablar
convulsiones y una disposicioacuten contento
Luego duranted unas vacaciones en Italia descubrioacute
una pintura llamada ldquoUn Nintildeo con una Marionetardquo
creado por el artista del Renascimiento Giovanni
Francesco Caroto en el museo Castelvecchio en
Verona La pintura le hizo pensar en los nintildeos que eran
sus pacientes y le condujo a publicar un artiacuteculo
profesional en el antildeo 1965 que describiacutea lo que el
llamaba ldquoNintildeos Marionetasrdquo En aquel momento la
importancia de su artiacuteculo no fue reconocido como algo
importante
No pasoacute nada mas hasta Charles A Williams y Jaime L
Frias del departamento de Pediacuteatra Divisiacuteon de
Geneacutetica de la Universidad de Florida Colegio de
Medicina de Gainesville Florida sometieron un
artiacuteculo a la Revista Americana de Geneacutetica Meacutedica
explicando estudios de seacuteis pacientes comparando sus
datos con los de informes previos ndash incluyendo atrasos
intelectuales severos el andar como un ldquomarionetardquo
anormalidades cranio-faciales y espisodios frecuentes
de risas De repente se notoacute que eso era mucho maacutes
comuacuten de lo que anteriormente se creiacutea Ellos
propusieron ponerle el nombre de Siacutendrome de
Angelman en honor del Dr Harry Angelman
La Historia del Siacutendrome de Angelman (Spanish Translation)
Angelman Today
Gareth Edwards (Directeur de Star Wars) lrsquoaffirme la Force est avec lrsquoAngelman Syndrome Alliance (ASA)
On dit souvent que les parents feraient tout pour leurs enfants et crsquoest ce qui se veacuterifie agrave lrsquooccasion drsquoune maladie rare appeleacutee le syndrome drsquoAngelman Animeacutees drsquoun amour infini pour leurs enfants des organisations parentales de 15 pays ont formeacute une alliance dans le but de faire avancer la recherche qui permettra agrave ces enfants de parler courir et vivre leur vie pleinement Comme lrsquoaffirmait dans son intervention Gareth Edwards soutien de lrsquoassociation de bienfaisance anglaise qui accueillait cette anneacutee la confeacuterence internationale agrave Liverpool laquo Les Anges vont plus loin et au-delagrave raquo
De reacutecentes deacutecouvertes dues par le Professeur Art Beaudet (USA) avec le soutien des laboratoires pharmaceutiques ISIS vont conduire agrave des essais cliniques Drsquoautres chercheurs soutenus par des socieacuteteacutes pharmaceutiques ont obtenu des reacutesultats prometteurs pour ameacuteliorer la qualiteacute de vie des enfants et des adultes atteints du syndrome drsquoAngelman
Surmontant les obstacles dus aux langues aux diffeacuterences culturelles et leacutegales les organisations parentales ont creacuteeacute lrsquoAlliance du Syndrome drsquoAngelman (ASA) visant agrave faire progresser la recherche et agrave mettre en commun les ressources et les financements Dans les deux premiegraveres anneacutees 550 000 euro ont eacuteteacute reacuteunis et drsquoautres organisations venues du monde entier souhaitent srsquoy associer Cette anneacutee les organisations de parents se sont rencontreacutees agrave Liverpool dans le cadre du 50egraveme anniversaire de lrsquoidentification du syndrome Eacutetaient repreacutesenteacutes lrsquoAngleterre lrsquoIrlande la Belgique les Pays Bas lrsquoAllemagne lrsquoAutriche la France lrsquoItalie le Portugal le Japon Israeumll la Hongrie la Pologne la Finlande et la Suisse
Comme le disait le Professeur Ype Elgersma (NL) laquo Nous vivons des temps prometteurs car nous sommes en mesure drsquoinverser une grave maladie geacuteneacutetique raquo Crsquoest pourquoi il est de plus en plus neacutecessaire de renforcer notre action et de trouver drsquoautres financements Parce qursquoil est clair que chaque parent souhaite que son enfant vive heureux et en bonne santeacute
Tout ce que nous faisons nous le faisons pour nos Anges wwwangelmanallianceorg
Pour toute information sur lrsquoAlliance la recherche et drsquoautres questions vous pouvez contacter Betty Willemsen bettywillemsenninafoundationeu
Angelman Today
God only gives us what He is willing to walk us through
-Joell Gingrich Ketcham
ldquo ldquo
ldquo
Adding youtube video
platform to Angelman Today
Video content will include bull Interviews
bull Product Reviews
bull Latest Research
bull How To videos
bull Parent tips and interviews
bull Much more
Email Lizzieangelmantodaycom if you
would like to participate
Announcements
We are expanding Angelman Today to include a new
platform of video media
To do this we will be making some changes that will
include the publishing schedule for the online digital
magazine Starting in January 2016 we will start
publishing Angelman Today quarterly 4 information-
packed editions a year
Subscriptions of the online magazine will remain
FREE
Subscribing to the YouTube channel is also FREE
We welcome all Angelman foundations parents
care takers physicians and researchers to
contribute Deadlines are
bull December 10
bull March 10
bull June 10
bull September 10
Show your support for Angelman Today and subscribe
WWWANGELMANTODAYCOM November December 2015
Toby B Kroger in Kentucky Scotty at Wegmans in NY
There are many challenges that come along with being
a caretaker of an individual with special needs
including a task that for many may be simple a trip
that we all must do regularly which is shop for
groceries
The best inventions are usually created from a persons
desire to satisfy a need or to solve a problem they
encounter in their own life One set of parents did just
that Drew Ann and David Long have three children
Caroline is their middle child she was diagnosed with
Rett syndrome The challenge came when Drew Ann
went grocery shopping with her kids She had a
Making Shopping A Little
Easier This Holiday Season helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
toddler and Caroline in her wheelchair The problem
presented itself as in the form of a question ldquoHow
do you push a wheelchair and a shopping cartrdquo
Drew Ann had the answer She was able to vision the
cart and sat in her car and sketched it out on paper
She knew she was not the first to have this dilemma
nor would she be the last
Carolinersquos Carts can now be found at some select
retailers You can visit wwwcarolinescartcom to
find a location near you
Parents we need your help We at Angelman Today
are calling for action There are not enough stores
with Carolinersquos carts Parents it is up to us We are
the ones that need them so we have to be the ones to
request them at our local retailers Some stores like
Target Shoprite Publix Lucky and Wegmans are
starting to have them available If they are not
currently at a store near you just ask the manager
You will be helping not only your family but the
many other families that may not yet even know this
helpful cart exists
WWWANGELMANTODAYCOM November December 2015
Thank you A big thanks to all of the contributors that help bring you Angelman Today
Angelman Today Supporters
If I Need Help ndash wwwifineedhelporg
All of the Angelman and
Associated
Foundations
across the globe
Additional Contributors
Kat Adams
Maria Cano Moraleda
Erin Bates
Angelman Today is a lifestyle guide to achieving better health for individuals with Angelman Syndrome and their families It is written with your needs in mind but is not a substitute for consulting with your physician or other health care providers The publisher and authors are not responsible for any adverse effects or consequences resulting from the use of the suggestions products or procedures that appear on this website or online magazine All matters regarding your health should be supervised by a licensed health care physician Copyright 2014 Angelman Today LLC All rights reserved worldwide
CONTRIBUTORS
Marilyn Kennedy
Assistant Editor Marilynangelmantodaycom
Sybille Kraft Bellamy
Parent Expert in Nutrition
And LGIT diet FacebookcomAngelmanSyndromeDiet
STAY CONNECTED ON THE GO
DOWNLOAD THE NEW ISSUU APP TODAY ON GOOGLE PLAY
AND NOW IN THE APP STORE
Dr Harry Angelman
1915 ndash 1996
Dr Harry Angelman was an English physician
who identified what is now known as Angelman
Syndrome
He first observed three children who were not
related but showed similar symptoms of severe
intellectual delay stiff jerky gait lack of speech
seizures motor disorders and happy demeanors
Although Dr Angelman was born in Birkenhead
England he was an enthusiast for the language
and country of Italy And it was while vacationing
in Italy he observed an oil painting called A Boy
with a Puppet by the renaissance artist Giovanni
Francesco Caroto at the Castelvecchio museum in
Verona Reminded of the children hersquod observed
Dr Angelman published a paper in 1965 that
described what he called ldquopuppet childrenrdquo At
this time his paper was not immediately
recognized as important
It wasnrsquot until 1982 when Charles A Williams
and Jaime L Frias of the department of Pediatrics
Division of Genetics University of Florida
College of Medicine Gainesville submitted a
paper to the American Journal of Medical
Genetics reporting studies of six patients and
comparing their data to those from previous
reports - severe developmental delay ldquopuppet-
likerdquo gait craniofacial abnormalities and frequent
episodes of laughter- that it became clear the
syndrome was more common than previously
thought They proposed the name of this disorder
be changed to Angelman Syndrome
The History of Angelman Syndrome
Angelman Today
Books Recommended by Parents
Connect with us on
Thanks for your support
Please Share Angelman Today
wwwangelmantodaycom
Whatrsquos inside
History of AShelliphelliphelliphelliphelliphelliphelliphelliphellip34 Parent Recommended Bookshelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip35
Angelman and Associated
Foundations Canadian Angelman Syndrome Societyhelliphelliphelliphelliphelliphelliphelliphelliphellip4 Associacao de Sindrome de Angelman de Portugalhelliphelliphelliphelliphellip6 Asociacion del Sindrome de Angelmanhelliphelliphelliphelliphelliphelliphelliphelliphellip11 13 The Charlie Foundationhelliphelliphelliphelliphellip16 The Angelman Syndrome Foundationhelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip20 Angelman Syndrome Alliancehellip26 28
On the cover Melissa age 12
Photo provided by Kat Adams
WWWANGELMANTODAYCOM November December 2015
Editorrsquos Letterhelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip2 Epilepsy Awarenesshelliphellip helliphelliphelliphelliphelliphellip5 Angel Parent Quotehelliphelliphelliphelliphelliphelliphelliphelliphellip7 Angels in Action - Danielehelliphelliphelliphelliphelliphellip8 Angel Parent Quotehelliphelliphelliphelliphelliphelliphellip9 If I Need Help Giveawayhelliphelliphelliphelliphelliphelliphellip10 Happy Holidayshelliphelliphelliphelliphelliphelliphelliphelliphelliphellip12 Angels Week Off Vacation Giveawayhelliphelliphelliphelliphelliphelliphellip14 Holiday Gift Guidehelliphelliphelliphelliphelliphelliphelliphelliphellip17 Angels in Action (Melissa Adams)helliphelliphelliphelliphelliphelliphellip18 2016 Cover Contesthelliphelliphelliphelliphelliphelliphelliphellip19 Angels in Actionhelliphelliphelliphelliphelliphelliphelliphellip25 The History of Angelman Syndrome (Spanish)helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip27 Angel Parent Quotehelliphelliphelliphelliphelliphelliphelliphelliphellip29 Announcementshelliphelliphelliphelliphelliphelliphelliphellip30 Carolinersquos Carthelliphelliphelliphelliphelliphelliphelliphelliphelliphellip31 Stay Connectedhelliphelliphelliphelliphelliphelliphelliphelliphellip33
6
20
10
31
11
Save the Date -- CASS Conference in 2016
VENUE FOR EDMONTON 2016 CONFERENCE SELECTED
Conference Co-chairs Terry Singleton and Kent Fleming advise
newsletter readers that the CASS Board has approved the Double Tree by
Hilton in Edmonton as the venue for the 14th International Conference of
the Canadian Angelman Syndrome Society scheduled for 13 to 16 July
2016
Watch the CASS Newsletter and Website wwwangelmancanadaorg for
continuing updates as planning proceeds Thank you everyone for
helping to get the word out about your Edmonton 2016 Conference
We look forward to welcoming you to an informative and enjoyable
conference
Please stay tuned to the CASS website for News Flash Updates on this
exciting event
wwwangelmancanadaorg
WWWANGELMANTODAYCOM November December 2015
Epilepsy Awareness
November is Epilepsy Awareness Month
Did you know
-1 in 10 people in the US have had a seizure
-The majority of individuals with Angelman Syndrome have Epilepsy
For more info visit
wwwepilepsyfoundationorg
We are running a crowdfunding
project to raise awareness and
funds to the Portuguese Angelman
cause
To donate andor get more
information
httppplcomptencausasum-
km-por-um-sorriso
-----------------
WWWANGELMANTODAYCOM November December 2015
ALWAYS
PRESUME
COMPETENCE
- Linda Rafert Yoakam
Angelman Today
ldquo
ldquo
WWWANGELMANTODAYCOM November December 2015
Angels in Action Celebrating the Abilities of our Angels
By Lyn Barnes
Daniel is 25years old lives in Dubbo NSW
Australia and has the best social life of anyone I
know (including me) He loves to go anywhere and
socialize with anyone He goes ten pin bowling to
the zoo the movies the local pub for lunch and
does Zumba twice a week
His smile is infectious and even though he suffers
daily from chronic pain that smile never leaves his
face making everyone who comes across him smile
as well
My angel Our angel half of Dubbos angel
Angelman Syndrome is something we all want to see cured But it has made me a better person It has taught me more about unconditional love than anything I ever learned in Sunday School or from any love song Were all on a journey to see our children made whole but maybe theyre making us whole in the processldquo
-Regie Hamm
Angelman Today
ldquo
ldquo
ldquoIf I Need Helprdquo and
ldquoAngelman Todayrdquo
care so much about
this community and
the safety of
individuals with
Angelman
Syndrome Now we
have partnered up to
offer you this great
promotion
WWWANGELMANTODAYCOM November December 2015
For 5 off your 1st purchase enter
promo code Angelman Today
See our video interview
WWWANGELMANTODAYCOM November December 2015
Libro Vivir con un Angel
Se trata de un libro escrito por 25 familias de la
Asociacioacuten contando sus propias experiencias
con un Angelman Un libro imprescindible para
comprender los que diariamente las familias
viven
Se trata de un libro escrito por 25
familias de la Asociacioacuten contando sus
propias experiencias con un Angelman
Un libro imprescindible para comprender
los que diariamente las familias viven
Hemos analizado los precios de envio al
extranjero y sale sobre 10euro cada libro El
que este interasado en que le enviemos
un libro al extranjero debera pagarlo con
tarjeta y a 20euro con gastos de envio
incluidos
Libro Vivir con un Angel para envios extranjero
httpwwwangelman-asaorg
Buy your copy
Compre su copia
From all of us at
WWWANGELMANTODAYCOM November December 2015
New Book ldquoLife with an Angel
ldquoWhat is Angelman Syndromerdquo That is usually
the first question we ask the doctor as soon as our
child is diagnosed with this rare disease And
then come the follow-up questions What can we
do Is there a treatment What is their life
expectancy
As soon as we become aware of the fact that
there is no treatment or cure our whole life is
turned upside down Each individual family deals
with the situation the best way they can Some
choose denial However sooner or later they will
try to contact other families in the same situation
who will be able to understand to share their
own experience and offer support in bad times
and celebrate with us the good times
All Angel families would have loved to hear
about the syndrome from a more positive and
closer point of view than that offered by doctors
And so 25 families belonging to the Spanish
Angelman Syndrome Association decided to
write down their personal stories in the hope of
spreading the word on Angelman Syndrome and
especially with the determination to help those
who in the future will come face to face with this
diagnosis
We want them to know that they are not alone
and that there is a life and hope beyond the
syndrome It may be difficult at times but it will
bring moments of total happiness more than we
could have imagined
And most importantly the book is a tribute to
our sons and daughters it is their lives and their
stories we are sharing with the world a story
they arenrsquot able to explain with words
wwwangelman-asaorg
Click here to buy the digital edition
(ebook 3 euros)
Click here to buy the paper edition
(20 euros shipping included)
Order online
The English version will be published soon
WWWANGELMANTODAYCOM November December 2015
The Angel Wings Foundation is bringing you an Angelman
Today Exclusive Vacation Giveaway
Last year the Angel Wings Foundation hit
upon a novel idea How about giving
someone a vacation Someone who could
really use it hellipsomeone who deserves it
hellipsomeone who might actually need it to re-
set their lives Well we did just that and it
worked out better than we couldrsquove ever
imagined
So this year wersquore doing it again One
deserving Angelman family will win an all
expense paid vacation to a music and wine
event in Napa California called ldquoLive In The
Vinyardrdquo
We realize that this isnrsquot scientific research
or new breakthrough therapy techniques or
an awareness campaign All of those things
are certainly vital and crucial to our
collective journey as Angelman parents We
cheer them on and support them
wholeheartedly But we at the Angel Wings
Foundation want to wrap our arms around
the Angelman community and give hugs
wherever and whenever we can We know
how fatiguing constant caregiving can be
We also know how isolating it can be for the
Angel to only see the same people day in and
day out So this ldquoAngel Week Offrdquo is just as
much for the Angels as it is for the parents
We will send in a male and female caregiver
to the familyrsquos home to give the Angel a
week off as well Activities will be planned
every day that donrsquot include mom and dad
After all everybody needs a break from
mom and dad sometimes Besides mom and
dad will be getting a massage or golfing or
horseback riding or drinking wine and
listening to music somewhere in Northern
California
So herersquos what you do hellipwrite an essay (500
words or less) describing your Angelman
journey We all have one and they are all
deserving of a great vacation But we can only
do one at a time right now hellipsorry An all-star
panel of judges will read the entries and
narrow them down to a top 5 The they will re-
read them and ONE family will win the
vacation
The panel consists of people from Make-A-
Wish Best Buddies Special Olympics
Angelman Today and one board member from
the Angel Wings Foundation I donrsquot read
them I just get to call you and tell you yoursquove
won hellipI love that part
All entries must be in by Thanksgiving Day
2015 A winner will be chosen and announced
on Christmas Eve hellipwhat a great Christmas
gift Then we will start making arrangements
for the vacation that will take place in April of
2016 A family member or designated care
giver (in charge) must be present with our
caregivers So keep that part in mind Safety
first
Last yearrsquos winners Mary and Rory were so
moved by the experience they have asked if
they can donate to this yearrsquos winner I think
that speaks for itself They sent in a video to
encourage everyone to enter
Hopefully one day wersquoll be able to do this
many times a year But for this year we canrsquot
wait to read the entries and award some
amazing Angel family a break and a time they
will never forget
We love you all Now get to writing
Email they essay entry to
AngelsWeekOffangelmantodaycom
WWWANGELMANTODAYCOM November December 2015
WWWANGELMANTODAYCOM November December 2015
WOULD YOU LIKE TO CONTRIBUTE
We welcome all Angelman foundations parents care takers physicians and researchers
Email articles and pictures to Lizzieangelmantodaycom
Holiday Gift Guide
Radiance Floor Lamp Night Light Star Projector
Chewbeads Military Dog Tags
Krazy Gears Sensory Weighted Blanket
Senseez Vibrating Pillow Crazy Aaronrsquos Thinking Putty
By Kat Adams Melissa is 12 years old and has Angelman
syndrome UPD She loves to play games and
laugh at her big Brother Jacobs jokes she has a
wicked sense of humor
Melissa won the Child of courage award at an
event in her home town I was very proud that
her fellow citizens chose to recognize her daily
struggles and her massive achievements in this
way
Melissa experiences life in such a way that
every day is an adventure she brings so much
love and happiness into both mine and Jacobs
lives
We have set up a small Foundation in Melissas
name to help support research into a cure for
Angelman syndrome and have had many good
times with our fundraising events taking part
in things such as skydiving and even carrying
Melissa in a sedan chair for 5 miles
Life is never dull with a child like Melissa
Lots of tears along the way but much more
laughter
Angels in Action
Last year was such a success we are doing it again Enter a picture of your loved one
with Angelman Syndrome Get your friends and family voting and they could be on
the January cover of Angelman Today Watch our Facebook page for details
2 16
2014 Cover
2015 Cover
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
The Meerdo Family
Kathryn Matt and Stetson from Chip at AS event
Brian and Drew Fitzgerald annual Blarney CupYaron Werber
Because of you AS families benefit
THANK YOU to our phenomenal supporters this past yearHoly Cow Our AS friends and families have truly impressed our socks off this year Your creativity and dedication is shattering past records and touching lives deeply We at the ASF are humbled and honored to have had independent fundraisers raise more than $100000 for the AS community to date
Check out what just a few of our families have done in 2015
Family Fun Day - Michael Drzewiecki and company
Berto and Minnie with their daughter Pam
Annual Tractor Cruise - Horton Kansas
Because of you AS families benefit
THANK YOU to every individual and organization that played a role in these fundraisers either by spearheading attending or donating to these events
Blarney Cup Paddle Tournament The Fitzgeraldrsquos in Ohio $25450
Meerdo Annual Golf Tournament The Meerdorsquos in Utah $19980
Chip Away at AS Golf Tournament The Elyrsquos in Georgia $11683
Tractor Cruise The Olsenrsquos in Kansas $5350
Cure for the Angels Family Day Angelique Tuthill in New York $4747
Discover Day Camp Christina Polleto in New York $4309
Yaron Werber of Ovid Therapeutics raised $3953 for ASF at the Brooklyn Rock n Roll 12 Marathon
Hauser Junior High School Fundraiser in Westchester New York $3535
Custom Harley Davidson Bike Show Noel Perez and Berto Castellanos in California $3360
Pardi Gras Promotion and Sales Proceeds $2500
Tierrarsquos Event $2435
Family Fun Day Michael Drzewiecki in New York $2338
The Hope Classic at Lower Merion High School in Medinah NY $2342
Run Like A Mother 5k Tiffany Cruikshank in Hinsdale Illinois $1880
Oakland Arsquos Fundraiser in California $1345
7th Street Sportsmen Club Fundraiser in Pennsylvania $1000
THANK YOU to all of the fundraisers who have brought in more than $100000 of donations in 2015 We are very excited at the possibilities and creativity our families will bring in 2016
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Summit4Angelman
Father to young boy with AS climbs Mt Kilimanjaro to raise awareness of ASFrom Kyle himself
Irsquom going to take 8 days to climb up the worldrsquos tallest freestanding mountain to raise awareness for Angelman syndrome and Irsquove realized during my training that I donrsquot think I can do it alone Of course Irsquom going up with a great group looking forward to helping the cause in any way they can but Irsquove found such strength in keeping focused on why Irsquom doing this and every time I ldquopicturerdquo my son Madden it keeps me going when I desperately want to quit or cut corners in training If I keep in mind how my son never quits and overcomes his challenges with a smile I realize this mountain isnrsquot quite as tall I as first thought The point ishellipwithout Madden this climb seems a lot more difficult Which got me thinking what if I have an army of Angels with me every step of the climb Irsquom asking you to send me a picture of your Angel so I can take them to the top of Kilimanjaro with me Each photo and story you send me will provide the strength I need to keep going when the air is thin the weather is cold and my head is pounding I will do everything in my power to get to the top with them My chances will be far better with each person I take up with me If I make it to the Summit I promise they will see the view with me at 19341 feet
Visit Kylersquos personal blog at wwwsummit4angelmancom to find out more about Kylersquos journey
How can you helpbull Share your personal Summit story of accomplishment
on Facebook and Twitter and include the hashtag Summit4Angelman
bull Introduce Angelman syndrome to new peoplehellipKylersquos goal is to raise awareness of AS and he wants to reach 19341mdashthatrsquos one new person for every foot that Mt Kilimanjaro is tall
bull Share a photo of your loved one with AS (send to kyrooneyoutlookcom) for Kyle to take to the top of Mt Kilimanjaro
Looks Whatrsquos Shouted From the Mountaintop Angelman Syndrome Awareness
ASF Communication Training Series
Having challenges with helping your loved one with AS better communicate We have the resource for you In collaboration with several AS communication experts the ASF has created a FREE communication resource that you can access AT ANY TIME the ASF Communication Training Series This Series takes all of the hours of great communication workshops and breaks them down into smaller digestible parts so that you and your individual with AS can reach herhis greatest communication success at any age Using web-based teaching the Series is designed to be sequential and you can join at any time and proceed through the training at your childrsquos pace of learning Click here for more and to access the schedule past webinar recordings and handouts
Meet the experts
ERIN SHELDON M EDErin earned her Masters of Education studying the learning characteristics of students with AS Erin works as an assistive technology consultant with a focus on supporting students with complex learning needs to access the general curriculum in inclusive classrooms She founded the Angelman Literacy
Project an initiative to support families and school teams to foster emergent literacy development in students with AS She presents professional development workshops and webinars across North America and Europe including at conferences such as Closing the Gap and ATIA and has authored manuals book chapters and journal articles
DR CAROLINE MUSSELWHITE CCC-SLPDr Musselwhite is an assistive technology specialist with more than 35 years of experience working with children and adolescents with significant disabilities in a variety of settings including Head Start developmental day programs homes and the public schools Dr
Musselwhite has written a number of textbooks and ldquohow-tordquo books on a range of topics and has also authored many books and software programs for youth with disabilities She has presented thousands of workshops throughout North and South America Australia Europe and Africa and is a founding member and Fellow of the International Society for Augmentative and Alternative Communication
MAUREEN NEVERS MS CCC-SLP LICENSED SPEECH-LANGUAGE PATHOLOGIST AUGMENTATIVE COMMUNICATION SPECIALISTMaureen earned a BS in Communication Disorders from the University of Massachusetts at Amherst in 1991 then earned a MS in Speech-Language
Pathology from the University of Vermont in 1993 Her graduate work included participation in a comprehensive training program in AAC She worked for Easter Seals in Massachusetts for eleven years before joining the Center on Disability and Community Inclusion at the University of Vermont eleven years ago She currently works as an Augmentative Communication Specialist with the Vermont I-Team where she is part of an interdisciplinary team that consults with school teams across the state to support individuals with complex communication needs
Communication training you can understand and use
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
MARY-LOUISE BERTRAMMary-Louise Bertram is a qualified Early Childhood Teacher from Perth Western Australia with special qualifications and training in the areas of communication sensory processing and literacy supports for children with complex disabilities Mary-Louise became involved with the AS community in 2007 while
teaching a class of six children four of whom had AS (all Del +) Since then Mary-Louise has worked with people with AS of all ages across Western Australia in the first statewide comprehensive AS-specific communication intervention of its kind She has supported families across the globe to advocate for their childrsquos right to high-quality communication and education intervention Mary-Louise currently works in private practice supporting individuals with complex disabilities (and their families) with communication and literacy
Families are also encouraged to support each other and share tips via the Seriesrsquo private ASF Communication Training Series Facebook group
Twenty years ago we never would have imagined that so many generous people like you would open their hearts to help those affected by AS Your generosity eases the financial and emotional burden on families by supporting our family resource program and has helped our researchers make significant breakthroughs in treatments and potential cures for AS Without you there would be no us We are forever grateful for your support
Click here to make a contribution to the ASFrsquos end-of-year appeal All donations are 100 tax deductible per IRS regulations
Itrsquos ALL because of YOU
WWWANGELMANTODAYCOM November December 2015
By Cass Gamero
My sons name is Alexander and he was
recently diagnosed in July 2015 Hes only
18 months old and is loved by all Anyone
who meets him cant help but be
memorized by his long eye lashes amp
beaming smile When you see him you
cant help but smile My son also has some
vision problems but is getting better He
loves his toy keys and could recognize his
bottle from anywhere Hes lovable
friendly joyful and bright
Angels in Action Celebrating the Abilities of our Angels
Gareth Edwards (Star Wars Director) acknowledges
The force is strong in the Angelman Alliance
It is often said that parents will do anything for their children A rare
disease called Angelman Syndrome is proving testimony to this fact
Driven by an unstoppable love for their children parent organisations
from 15 countries have formed an alliance to work together to progress
research that may help their children to speak run and live life to their
full potential As Gareth Edwards patron of the UK Charity that hosted
this yearsrsquo conference in Liverpool England said during his speech at
the conference ldquoAngels go further and beyondrdquo
With the support of ISIS pharmaceuticals recent findings by professor Art Beaudet (USA) are expected to
progress to clinical trials Results from other researchers in collaboration with pharmaceutical companies
also have promising results to improve the quality of life for children amp adults with Angelman Syndrome
Initially having to overcome language barriers cultural differences and different legal systems the parent
organisations created an international Alliance on Angelman Syndrome (ASA) to drive research forward
pooling resources and funds In the first two years over half a million eurorsquos (550000-) was raised with
more parent organisations worldwide continuing to join The parent organisations met this year in
Liverpool during the 50th anniversary of Angelman Syndrome At this conference representatives came
from England Ireland Belgium Netherlands Germany Austria France Italy Portugal Japan Israel
Hungary Poland Finland and Switzerland
As professor Ype Elgersma (NL) said ldquoThese are very exciting times because we might actually have the
possibility to reverse a severe genetic diseaserdquo Therefore the need to get things going is stronger than ever
within the Alliance and the need for more funding is evident Because in the end every parent wants their
child to be as happy and healthy as possible
Everything we do we do for our Angels wwwangelmanallianceor g
For information about the Alliance the research and other questions you can contact Betty Willemsen
bettywillemsenninafoundationeu
Dr Harry Angelman
1915 ndash 1996
El Dr Harry Angelman fue un meacutedico Ingleacutes quien
identificoacute lo que hoy en diacutea se llama Siacutendrome de
Angelman
Nacioacute en Birkenhead Inglaterra Le fascinaba el idioma
y la cultura de Italia
El fue el primero quien observoacute treacutes nintildeos no
relacionados quienes demostraban siacutentomas similares ndash
atrasos severos intelectuales un modo de andar que era
espasmoacutedico y riacutegido ausencia del hablar
convulsiones y una disposicioacuten contento
Luego duranted unas vacaciones en Italia descubrioacute
una pintura llamada ldquoUn Nintildeo con una Marionetardquo
creado por el artista del Renascimiento Giovanni
Francesco Caroto en el museo Castelvecchio en
Verona La pintura le hizo pensar en los nintildeos que eran
sus pacientes y le condujo a publicar un artiacuteculo
profesional en el antildeo 1965 que describiacutea lo que el
llamaba ldquoNintildeos Marionetasrdquo En aquel momento la
importancia de su artiacuteculo no fue reconocido como algo
importante
No pasoacute nada mas hasta Charles A Williams y Jaime L
Frias del departamento de Pediacuteatra Divisiacuteon de
Geneacutetica de la Universidad de Florida Colegio de
Medicina de Gainesville Florida sometieron un
artiacuteculo a la Revista Americana de Geneacutetica Meacutedica
explicando estudios de seacuteis pacientes comparando sus
datos con los de informes previos ndash incluyendo atrasos
intelectuales severos el andar como un ldquomarionetardquo
anormalidades cranio-faciales y espisodios frecuentes
de risas De repente se notoacute que eso era mucho maacutes
comuacuten de lo que anteriormente se creiacutea Ellos
propusieron ponerle el nombre de Siacutendrome de
Angelman en honor del Dr Harry Angelman
La Historia del Siacutendrome de Angelman (Spanish Translation)
Angelman Today
Gareth Edwards (Directeur de Star Wars) lrsquoaffirme la Force est avec lrsquoAngelman Syndrome Alliance (ASA)
On dit souvent que les parents feraient tout pour leurs enfants et crsquoest ce qui se veacuterifie agrave lrsquooccasion drsquoune maladie rare appeleacutee le syndrome drsquoAngelman Animeacutees drsquoun amour infini pour leurs enfants des organisations parentales de 15 pays ont formeacute une alliance dans le but de faire avancer la recherche qui permettra agrave ces enfants de parler courir et vivre leur vie pleinement Comme lrsquoaffirmait dans son intervention Gareth Edwards soutien de lrsquoassociation de bienfaisance anglaise qui accueillait cette anneacutee la confeacuterence internationale agrave Liverpool laquo Les Anges vont plus loin et au-delagrave raquo
De reacutecentes deacutecouvertes dues par le Professeur Art Beaudet (USA) avec le soutien des laboratoires pharmaceutiques ISIS vont conduire agrave des essais cliniques Drsquoautres chercheurs soutenus par des socieacuteteacutes pharmaceutiques ont obtenu des reacutesultats prometteurs pour ameacuteliorer la qualiteacute de vie des enfants et des adultes atteints du syndrome drsquoAngelman
Surmontant les obstacles dus aux langues aux diffeacuterences culturelles et leacutegales les organisations parentales ont creacuteeacute lrsquoAlliance du Syndrome drsquoAngelman (ASA) visant agrave faire progresser la recherche et agrave mettre en commun les ressources et les financements Dans les deux premiegraveres anneacutees 550 000 euro ont eacuteteacute reacuteunis et drsquoautres organisations venues du monde entier souhaitent srsquoy associer Cette anneacutee les organisations de parents se sont rencontreacutees agrave Liverpool dans le cadre du 50egraveme anniversaire de lrsquoidentification du syndrome Eacutetaient repreacutesenteacutes lrsquoAngleterre lrsquoIrlande la Belgique les Pays Bas lrsquoAllemagne lrsquoAutriche la France lrsquoItalie le Portugal le Japon Israeumll la Hongrie la Pologne la Finlande et la Suisse
Comme le disait le Professeur Ype Elgersma (NL) laquo Nous vivons des temps prometteurs car nous sommes en mesure drsquoinverser une grave maladie geacuteneacutetique raquo Crsquoest pourquoi il est de plus en plus neacutecessaire de renforcer notre action et de trouver drsquoautres financements Parce qursquoil est clair que chaque parent souhaite que son enfant vive heureux et en bonne santeacute
Tout ce que nous faisons nous le faisons pour nos Anges wwwangelmanallianceorg
Pour toute information sur lrsquoAlliance la recherche et drsquoautres questions vous pouvez contacter Betty Willemsen bettywillemsenninafoundationeu
Angelman Today
God only gives us what He is willing to walk us through
-Joell Gingrich Ketcham
ldquo ldquo
ldquo
Adding youtube video
platform to Angelman Today
Video content will include bull Interviews
bull Product Reviews
bull Latest Research
bull How To videos
bull Parent tips and interviews
bull Much more
Email Lizzieangelmantodaycom if you
would like to participate
Announcements
We are expanding Angelman Today to include a new
platform of video media
To do this we will be making some changes that will
include the publishing schedule for the online digital
magazine Starting in January 2016 we will start
publishing Angelman Today quarterly 4 information-
packed editions a year
Subscriptions of the online magazine will remain
FREE
Subscribing to the YouTube channel is also FREE
We welcome all Angelman foundations parents
care takers physicians and researchers to
contribute Deadlines are
bull December 10
bull March 10
bull June 10
bull September 10
Show your support for Angelman Today and subscribe
WWWANGELMANTODAYCOM November December 2015
Toby B Kroger in Kentucky Scotty at Wegmans in NY
There are many challenges that come along with being
a caretaker of an individual with special needs
including a task that for many may be simple a trip
that we all must do regularly which is shop for
groceries
The best inventions are usually created from a persons
desire to satisfy a need or to solve a problem they
encounter in their own life One set of parents did just
that Drew Ann and David Long have three children
Caroline is their middle child she was diagnosed with
Rett syndrome The challenge came when Drew Ann
went grocery shopping with her kids She had a
Making Shopping A Little
Easier This Holiday Season helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
toddler and Caroline in her wheelchair The problem
presented itself as in the form of a question ldquoHow
do you push a wheelchair and a shopping cartrdquo
Drew Ann had the answer She was able to vision the
cart and sat in her car and sketched it out on paper
She knew she was not the first to have this dilemma
nor would she be the last
Carolinersquos Carts can now be found at some select
retailers You can visit wwwcarolinescartcom to
find a location near you
Parents we need your help We at Angelman Today
are calling for action There are not enough stores
with Carolinersquos carts Parents it is up to us We are
the ones that need them so we have to be the ones to
request them at our local retailers Some stores like
Target Shoprite Publix Lucky and Wegmans are
starting to have them available If they are not
currently at a store near you just ask the manager
You will be helping not only your family but the
many other families that may not yet even know this
helpful cart exists
WWWANGELMANTODAYCOM November December 2015
Thank you A big thanks to all of the contributors that help bring you Angelman Today
Angelman Today Supporters
If I Need Help ndash wwwifineedhelporg
All of the Angelman and
Associated
Foundations
across the globe
Additional Contributors
Kat Adams
Maria Cano Moraleda
Erin Bates
Angelman Today is a lifestyle guide to achieving better health for individuals with Angelman Syndrome and their families It is written with your needs in mind but is not a substitute for consulting with your physician or other health care providers The publisher and authors are not responsible for any adverse effects or consequences resulting from the use of the suggestions products or procedures that appear on this website or online magazine All matters regarding your health should be supervised by a licensed health care physician Copyright 2014 Angelman Today LLC All rights reserved worldwide
CONTRIBUTORS
Marilyn Kennedy
Assistant Editor Marilynangelmantodaycom
Sybille Kraft Bellamy
Parent Expert in Nutrition
And LGIT diet FacebookcomAngelmanSyndromeDiet
STAY CONNECTED ON THE GO
DOWNLOAD THE NEW ISSUU APP TODAY ON GOOGLE PLAY
AND NOW IN THE APP STORE
Dr Harry Angelman
1915 ndash 1996
Dr Harry Angelman was an English physician
who identified what is now known as Angelman
Syndrome
He first observed three children who were not
related but showed similar symptoms of severe
intellectual delay stiff jerky gait lack of speech
seizures motor disorders and happy demeanors
Although Dr Angelman was born in Birkenhead
England he was an enthusiast for the language
and country of Italy And it was while vacationing
in Italy he observed an oil painting called A Boy
with a Puppet by the renaissance artist Giovanni
Francesco Caroto at the Castelvecchio museum in
Verona Reminded of the children hersquod observed
Dr Angelman published a paper in 1965 that
described what he called ldquopuppet childrenrdquo At
this time his paper was not immediately
recognized as important
It wasnrsquot until 1982 when Charles A Williams
and Jaime L Frias of the department of Pediatrics
Division of Genetics University of Florida
College of Medicine Gainesville submitted a
paper to the American Journal of Medical
Genetics reporting studies of six patients and
comparing their data to those from previous
reports - severe developmental delay ldquopuppet-
likerdquo gait craniofacial abnormalities and frequent
episodes of laughter- that it became clear the
syndrome was more common than previously
thought They proposed the name of this disorder
be changed to Angelman Syndrome
The History of Angelman Syndrome
Angelman Today
Books Recommended by Parents
Connect with us on
Thanks for your support
Please Share Angelman Today
wwwangelmantodaycom
Save the Date -- CASS Conference in 2016
VENUE FOR EDMONTON 2016 CONFERENCE SELECTED
Conference Co-chairs Terry Singleton and Kent Fleming advise
newsletter readers that the CASS Board has approved the Double Tree by
Hilton in Edmonton as the venue for the 14th International Conference of
the Canadian Angelman Syndrome Society scheduled for 13 to 16 July
2016
Watch the CASS Newsletter and Website wwwangelmancanadaorg for
continuing updates as planning proceeds Thank you everyone for
helping to get the word out about your Edmonton 2016 Conference
We look forward to welcoming you to an informative and enjoyable
conference
Please stay tuned to the CASS website for News Flash Updates on this
exciting event
wwwangelmancanadaorg
WWWANGELMANTODAYCOM November December 2015
Epilepsy Awareness
November is Epilepsy Awareness Month
Did you know
-1 in 10 people in the US have had a seizure
-The majority of individuals with Angelman Syndrome have Epilepsy
For more info visit
wwwepilepsyfoundationorg
We are running a crowdfunding
project to raise awareness and
funds to the Portuguese Angelman
cause
To donate andor get more
information
httppplcomptencausasum-
km-por-um-sorriso
-----------------
WWWANGELMANTODAYCOM November December 2015
ALWAYS
PRESUME
COMPETENCE
- Linda Rafert Yoakam
Angelman Today
ldquo
ldquo
WWWANGELMANTODAYCOM November December 2015
Angels in Action Celebrating the Abilities of our Angels
By Lyn Barnes
Daniel is 25years old lives in Dubbo NSW
Australia and has the best social life of anyone I
know (including me) He loves to go anywhere and
socialize with anyone He goes ten pin bowling to
the zoo the movies the local pub for lunch and
does Zumba twice a week
His smile is infectious and even though he suffers
daily from chronic pain that smile never leaves his
face making everyone who comes across him smile
as well
My angel Our angel half of Dubbos angel
Angelman Syndrome is something we all want to see cured But it has made me a better person It has taught me more about unconditional love than anything I ever learned in Sunday School or from any love song Were all on a journey to see our children made whole but maybe theyre making us whole in the processldquo
-Regie Hamm
Angelman Today
ldquo
ldquo
ldquoIf I Need Helprdquo and
ldquoAngelman Todayrdquo
care so much about
this community and
the safety of
individuals with
Angelman
Syndrome Now we
have partnered up to
offer you this great
promotion
WWWANGELMANTODAYCOM November December 2015
For 5 off your 1st purchase enter
promo code Angelman Today
See our video interview
WWWANGELMANTODAYCOM November December 2015
Libro Vivir con un Angel
Se trata de un libro escrito por 25 familias de la
Asociacioacuten contando sus propias experiencias
con un Angelman Un libro imprescindible para
comprender los que diariamente las familias
viven
Se trata de un libro escrito por 25
familias de la Asociacioacuten contando sus
propias experiencias con un Angelman
Un libro imprescindible para comprender
los que diariamente las familias viven
Hemos analizado los precios de envio al
extranjero y sale sobre 10euro cada libro El
que este interasado en que le enviemos
un libro al extranjero debera pagarlo con
tarjeta y a 20euro con gastos de envio
incluidos
Libro Vivir con un Angel para envios extranjero
httpwwwangelman-asaorg
Buy your copy
Compre su copia
From all of us at
WWWANGELMANTODAYCOM November December 2015
New Book ldquoLife with an Angel
ldquoWhat is Angelman Syndromerdquo That is usually
the first question we ask the doctor as soon as our
child is diagnosed with this rare disease And
then come the follow-up questions What can we
do Is there a treatment What is their life
expectancy
As soon as we become aware of the fact that
there is no treatment or cure our whole life is
turned upside down Each individual family deals
with the situation the best way they can Some
choose denial However sooner or later they will
try to contact other families in the same situation
who will be able to understand to share their
own experience and offer support in bad times
and celebrate with us the good times
All Angel families would have loved to hear
about the syndrome from a more positive and
closer point of view than that offered by doctors
And so 25 families belonging to the Spanish
Angelman Syndrome Association decided to
write down their personal stories in the hope of
spreading the word on Angelman Syndrome and
especially with the determination to help those
who in the future will come face to face with this
diagnosis
We want them to know that they are not alone
and that there is a life and hope beyond the
syndrome It may be difficult at times but it will
bring moments of total happiness more than we
could have imagined
And most importantly the book is a tribute to
our sons and daughters it is their lives and their
stories we are sharing with the world a story
they arenrsquot able to explain with words
wwwangelman-asaorg
Click here to buy the digital edition
(ebook 3 euros)
Click here to buy the paper edition
(20 euros shipping included)
Order online
The English version will be published soon
WWWANGELMANTODAYCOM November December 2015
The Angel Wings Foundation is bringing you an Angelman
Today Exclusive Vacation Giveaway
Last year the Angel Wings Foundation hit
upon a novel idea How about giving
someone a vacation Someone who could
really use it hellipsomeone who deserves it
hellipsomeone who might actually need it to re-
set their lives Well we did just that and it
worked out better than we couldrsquove ever
imagined
So this year wersquore doing it again One
deserving Angelman family will win an all
expense paid vacation to a music and wine
event in Napa California called ldquoLive In The
Vinyardrdquo
We realize that this isnrsquot scientific research
or new breakthrough therapy techniques or
an awareness campaign All of those things
are certainly vital and crucial to our
collective journey as Angelman parents We
cheer them on and support them
wholeheartedly But we at the Angel Wings
Foundation want to wrap our arms around
the Angelman community and give hugs
wherever and whenever we can We know
how fatiguing constant caregiving can be
We also know how isolating it can be for the
Angel to only see the same people day in and
day out So this ldquoAngel Week Offrdquo is just as
much for the Angels as it is for the parents
We will send in a male and female caregiver
to the familyrsquos home to give the Angel a
week off as well Activities will be planned
every day that donrsquot include mom and dad
After all everybody needs a break from
mom and dad sometimes Besides mom and
dad will be getting a massage or golfing or
horseback riding or drinking wine and
listening to music somewhere in Northern
California
So herersquos what you do hellipwrite an essay (500
words or less) describing your Angelman
journey We all have one and they are all
deserving of a great vacation But we can only
do one at a time right now hellipsorry An all-star
panel of judges will read the entries and
narrow them down to a top 5 The they will re-
read them and ONE family will win the
vacation
The panel consists of people from Make-A-
Wish Best Buddies Special Olympics
Angelman Today and one board member from
the Angel Wings Foundation I donrsquot read
them I just get to call you and tell you yoursquove
won hellipI love that part
All entries must be in by Thanksgiving Day
2015 A winner will be chosen and announced
on Christmas Eve hellipwhat a great Christmas
gift Then we will start making arrangements
for the vacation that will take place in April of
2016 A family member or designated care
giver (in charge) must be present with our
caregivers So keep that part in mind Safety
first
Last yearrsquos winners Mary and Rory were so
moved by the experience they have asked if
they can donate to this yearrsquos winner I think
that speaks for itself They sent in a video to
encourage everyone to enter
Hopefully one day wersquoll be able to do this
many times a year But for this year we canrsquot
wait to read the entries and award some
amazing Angel family a break and a time they
will never forget
We love you all Now get to writing
Email they essay entry to
AngelsWeekOffangelmantodaycom
WWWANGELMANTODAYCOM November December 2015
WWWANGELMANTODAYCOM November December 2015
WOULD YOU LIKE TO CONTRIBUTE
We welcome all Angelman foundations parents care takers physicians and researchers
Email articles and pictures to Lizzieangelmantodaycom
Holiday Gift Guide
Radiance Floor Lamp Night Light Star Projector
Chewbeads Military Dog Tags
Krazy Gears Sensory Weighted Blanket
Senseez Vibrating Pillow Crazy Aaronrsquos Thinking Putty
By Kat Adams Melissa is 12 years old and has Angelman
syndrome UPD She loves to play games and
laugh at her big Brother Jacobs jokes she has a
wicked sense of humor
Melissa won the Child of courage award at an
event in her home town I was very proud that
her fellow citizens chose to recognize her daily
struggles and her massive achievements in this
way
Melissa experiences life in such a way that
every day is an adventure she brings so much
love and happiness into both mine and Jacobs
lives
We have set up a small Foundation in Melissas
name to help support research into a cure for
Angelman syndrome and have had many good
times with our fundraising events taking part
in things such as skydiving and even carrying
Melissa in a sedan chair for 5 miles
Life is never dull with a child like Melissa
Lots of tears along the way but much more
laughter
Angels in Action
Last year was such a success we are doing it again Enter a picture of your loved one
with Angelman Syndrome Get your friends and family voting and they could be on
the January cover of Angelman Today Watch our Facebook page for details
2 16
2014 Cover
2015 Cover
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
The Meerdo Family
Kathryn Matt and Stetson from Chip at AS event
Brian and Drew Fitzgerald annual Blarney CupYaron Werber
Because of you AS families benefit
THANK YOU to our phenomenal supporters this past yearHoly Cow Our AS friends and families have truly impressed our socks off this year Your creativity and dedication is shattering past records and touching lives deeply We at the ASF are humbled and honored to have had independent fundraisers raise more than $100000 for the AS community to date
Check out what just a few of our families have done in 2015
Family Fun Day - Michael Drzewiecki and company
Berto and Minnie with their daughter Pam
Annual Tractor Cruise - Horton Kansas
Because of you AS families benefit
THANK YOU to every individual and organization that played a role in these fundraisers either by spearheading attending or donating to these events
Blarney Cup Paddle Tournament The Fitzgeraldrsquos in Ohio $25450
Meerdo Annual Golf Tournament The Meerdorsquos in Utah $19980
Chip Away at AS Golf Tournament The Elyrsquos in Georgia $11683
Tractor Cruise The Olsenrsquos in Kansas $5350
Cure for the Angels Family Day Angelique Tuthill in New York $4747
Discover Day Camp Christina Polleto in New York $4309
Yaron Werber of Ovid Therapeutics raised $3953 for ASF at the Brooklyn Rock n Roll 12 Marathon
Hauser Junior High School Fundraiser in Westchester New York $3535
Custom Harley Davidson Bike Show Noel Perez and Berto Castellanos in California $3360
Pardi Gras Promotion and Sales Proceeds $2500
Tierrarsquos Event $2435
Family Fun Day Michael Drzewiecki in New York $2338
The Hope Classic at Lower Merion High School in Medinah NY $2342
Run Like A Mother 5k Tiffany Cruikshank in Hinsdale Illinois $1880
Oakland Arsquos Fundraiser in California $1345
7th Street Sportsmen Club Fundraiser in Pennsylvania $1000
THANK YOU to all of the fundraisers who have brought in more than $100000 of donations in 2015 We are very excited at the possibilities and creativity our families will bring in 2016
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Summit4Angelman
Father to young boy with AS climbs Mt Kilimanjaro to raise awareness of ASFrom Kyle himself
Irsquom going to take 8 days to climb up the worldrsquos tallest freestanding mountain to raise awareness for Angelman syndrome and Irsquove realized during my training that I donrsquot think I can do it alone Of course Irsquom going up with a great group looking forward to helping the cause in any way they can but Irsquove found such strength in keeping focused on why Irsquom doing this and every time I ldquopicturerdquo my son Madden it keeps me going when I desperately want to quit or cut corners in training If I keep in mind how my son never quits and overcomes his challenges with a smile I realize this mountain isnrsquot quite as tall I as first thought The point ishellipwithout Madden this climb seems a lot more difficult Which got me thinking what if I have an army of Angels with me every step of the climb Irsquom asking you to send me a picture of your Angel so I can take them to the top of Kilimanjaro with me Each photo and story you send me will provide the strength I need to keep going when the air is thin the weather is cold and my head is pounding I will do everything in my power to get to the top with them My chances will be far better with each person I take up with me If I make it to the Summit I promise they will see the view with me at 19341 feet
Visit Kylersquos personal blog at wwwsummit4angelmancom to find out more about Kylersquos journey
How can you helpbull Share your personal Summit story of accomplishment
on Facebook and Twitter and include the hashtag Summit4Angelman
bull Introduce Angelman syndrome to new peoplehellipKylersquos goal is to raise awareness of AS and he wants to reach 19341mdashthatrsquos one new person for every foot that Mt Kilimanjaro is tall
bull Share a photo of your loved one with AS (send to kyrooneyoutlookcom) for Kyle to take to the top of Mt Kilimanjaro
Looks Whatrsquos Shouted From the Mountaintop Angelman Syndrome Awareness
ASF Communication Training Series
Having challenges with helping your loved one with AS better communicate We have the resource for you In collaboration with several AS communication experts the ASF has created a FREE communication resource that you can access AT ANY TIME the ASF Communication Training Series This Series takes all of the hours of great communication workshops and breaks them down into smaller digestible parts so that you and your individual with AS can reach herhis greatest communication success at any age Using web-based teaching the Series is designed to be sequential and you can join at any time and proceed through the training at your childrsquos pace of learning Click here for more and to access the schedule past webinar recordings and handouts
Meet the experts
ERIN SHELDON M EDErin earned her Masters of Education studying the learning characteristics of students with AS Erin works as an assistive technology consultant with a focus on supporting students with complex learning needs to access the general curriculum in inclusive classrooms She founded the Angelman Literacy
Project an initiative to support families and school teams to foster emergent literacy development in students with AS She presents professional development workshops and webinars across North America and Europe including at conferences such as Closing the Gap and ATIA and has authored manuals book chapters and journal articles
DR CAROLINE MUSSELWHITE CCC-SLPDr Musselwhite is an assistive technology specialist with more than 35 years of experience working with children and adolescents with significant disabilities in a variety of settings including Head Start developmental day programs homes and the public schools Dr
Musselwhite has written a number of textbooks and ldquohow-tordquo books on a range of topics and has also authored many books and software programs for youth with disabilities She has presented thousands of workshops throughout North and South America Australia Europe and Africa and is a founding member and Fellow of the International Society for Augmentative and Alternative Communication
MAUREEN NEVERS MS CCC-SLP LICENSED SPEECH-LANGUAGE PATHOLOGIST AUGMENTATIVE COMMUNICATION SPECIALISTMaureen earned a BS in Communication Disorders from the University of Massachusetts at Amherst in 1991 then earned a MS in Speech-Language
Pathology from the University of Vermont in 1993 Her graduate work included participation in a comprehensive training program in AAC She worked for Easter Seals in Massachusetts for eleven years before joining the Center on Disability and Community Inclusion at the University of Vermont eleven years ago She currently works as an Augmentative Communication Specialist with the Vermont I-Team where she is part of an interdisciplinary team that consults with school teams across the state to support individuals with complex communication needs
Communication training you can understand and use
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
MARY-LOUISE BERTRAMMary-Louise Bertram is a qualified Early Childhood Teacher from Perth Western Australia with special qualifications and training in the areas of communication sensory processing and literacy supports for children with complex disabilities Mary-Louise became involved with the AS community in 2007 while
teaching a class of six children four of whom had AS (all Del +) Since then Mary-Louise has worked with people with AS of all ages across Western Australia in the first statewide comprehensive AS-specific communication intervention of its kind She has supported families across the globe to advocate for their childrsquos right to high-quality communication and education intervention Mary-Louise currently works in private practice supporting individuals with complex disabilities (and their families) with communication and literacy
Families are also encouraged to support each other and share tips via the Seriesrsquo private ASF Communication Training Series Facebook group
Twenty years ago we never would have imagined that so many generous people like you would open their hearts to help those affected by AS Your generosity eases the financial and emotional burden on families by supporting our family resource program and has helped our researchers make significant breakthroughs in treatments and potential cures for AS Without you there would be no us We are forever grateful for your support
Click here to make a contribution to the ASFrsquos end-of-year appeal All donations are 100 tax deductible per IRS regulations
Itrsquos ALL because of YOU
WWWANGELMANTODAYCOM November December 2015
By Cass Gamero
My sons name is Alexander and he was
recently diagnosed in July 2015 Hes only
18 months old and is loved by all Anyone
who meets him cant help but be
memorized by his long eye lashes amp
beaming smile When you see him you
cant help but smile My son also has some
vision problems but is getting better He
loves his toy keys and could recognize his
bottle from anywhere Hes lovable
friendly joyful and bright
Angels in Action Celebrating the Abilities of our Angels
Gareth Edwards (Star Wars Director) acknowledges
The force is strong in the Angelman Alliance
It is often said that parents will do anything for their children A rare
disease called Angelman Syndrome is proving testimony to this fact
Driven by an unstoppable love for their children parent organisations
from 15 countries have formed an alliance to work together to progress
research that may help their children to speak run and live life to their
full potential As Gareth Edwards patron of the UK Charity that hosted
this yearsrsquo conference in Liverpool England said during his speech at
the conference ldquoAngels go further and beyondrdquo
With the support of ISIS pharmaceuticals recent findings by professor Art Beaudet (USA) are expected to
progress to clinical trials Results from other researchers in collaboration with pharmaceutical companies
also have promising results to improve the quality of life for children amp adults with Angelman Syndrome
Initially having to overcome language barriers cultural differences and different legal systems the parent
organisations created an international Alliance on Angelman Syndrome (ASA) to drive research forward
pooling resources and funds In the first two years over half a million eurorsquos (550000-) was raised with
more parent organisations worldwide continuing to join The parent organisations met this year in
Liverpool during the 50th anniversary of Angelman Syndrome At this conference representatives came
from England Ireland Belgium Netherlands Germany Austria France Italy Portugal Japan Israel
Hungary Poland Finland and Switzerland
As professor Ype Elgersma (NL) said ldquoThese are very exciting times because we might actually have the
possibility to reverse a severe genetic diseaserdquo Therefore the need to get things going is stronger than ever
within the Alliance and the need for more funding is evident Because in the end every parent wants their
child to be as happy and healthy as possible
Everything we do we do for our Angels wwwangelmanallianceor g
For information about the Alliance the research and other questions you can contact Betty Willemsen
bettywillemsenninafoundationeu
Dr Harry Angelman
1915 ndash 1996
El Dr Harry Angelman fue un meacutedico Ingleacutes quien
identificoacute lo que hoy en diacutea se llama Siacutendrome de
Angelman
Nacioacute en Birkenhead Inglaterra Le fascinaba el idioma
y la cultura de Italia
El fue el primero quien observoacute treacutes nintildeos no
relacionados quienes demostraban siacutentomas similares ndash
atrasos severos intelectuales un modo de andar que era
espasmoacutedico y riacutegido ausencia del hablar
convulsiones y una disposicioacuten contento
Luego duranted unas vacaciones en Italia descubrioacute
una pintura llamada ldquoUn Nintildeo con una Marionetardquo
creado por el artista del Renascimiento Giovanni
Francesco Caroto en el museo Castelvecchio en
Verona La pintura le hizo pensar en los nintildeos que eran
sus pacientes y le condujo a publicar un artiacuteculo
profesional en el antildeo 1965 que describiacutea lo que el
llamaba ldquoNintildeos Marionetasrdquo En aquel momento la
importancia de su artiacuteculo no fue reconocido como algo
importante
No pasoacute nada mas hasta Charles A Williams y Jaime L
Frias del departamento de Pediacuteatra Divisiacuteon de
Geneacutetica de la Universidad de Florida Colegio de
Medicina de Gainesville Florida sometieron un
artiacuteculo a la Revista Americana de Geneacutetica Meacutedica
explicando estudios de seacuteis pacientes comparando sus
datos con los de informes previos ndash incluyendo atrasos
intelectuales severos el andar como un ldquomarionetardquo
anormalidades cranio-faciales y espisodios frecuentes
de risas De repente se notoacute que eso era mucho maacutes
comuacuten de lo que anteriormente se creiacutea Ellos
propusieron ponerle el nombre de Siacutendrome de
Angelman en honor del Dr Harry Angelman
La Historia del Siacutendrome de Angelman (Spanish Translation)
Angelman Today
Gareth Edwards (Directeur de Star Wars) lrsquoaffirme la Force est avec lrsquoAngelman Syndrome Alliance (ASA)
On dit souvent que les parents feraient tout pour leurs enfants et crsquoest ce qui se veacuterifie agrave lrsquooccasion drsquoune maladie rare appeleacutee le syndrome drsquoAngelman Animeacutees drsquoun amour infini pour leurs enfants des organisations parentales de 15 pays ont formeacute une alliance dans le but de faire avancer la recherche qui permettra agrave ces enfants de parler courir et vivre leur vie pleinement Comme lrsquoaffirmait dans son intervention Gareth Edwards soutien de lrsquoassociation de bienfaisance anglaise qui accueillait cette anneacutee la confeacuterence internationale agrave Liverpool laquo Les Anges vont plus loin et au-delagrave raquo
De reacutecentes deacutecouvertes dues par le Professeur Art Beaudet (USA) avec le soutien des laboratoires pharmaceutiques ISIS vont conduire agrave des essais cliniques Drsquoautres chercheurs soutenus par des socieacuteteacutes pharmaceutiques ont obtenu des reacutesultats prometteurs pour ameacuteliorer la qualiteacute de vie des enfants et des adultes atteints du syndrome drsquoAngelman
Surmontant les obstacles dus aux langues aux diffeacuterences culturelles et leacutegales les organisations parentales ont creacuteeacute lrsquoAlliance du Syndrome drsquoAngelman (ASA) visant agrave faire progresser la recherche et agrave mettre en commun les ressources et les financements Dans les deux premiegraveres anneacutees 550 000 euro ont eacuteteacute reacuteunis et drsquoautres organisations venues du monde entier souhaitent srsquoy associer Cette anneacutee les organisations de parents se sont rencontreacutees agrave Liverpool dans le cadre du 50egraveme anniversaire de lrsquoidentification du syndrome Eacutetaient repreacutesenteacutes lrsquoAngleterre lrsquoIrlande la Belgique les Pays Bas lrsquoAllemagne lrsquoAutriche la France lrsquoItalie le Portugal le Japon Israeumll la Hongrie la Pologne la Finlande et la Suisse
Comme le disait le Professeur Ype Elgersma (NL) laquo Nous vivons des temps prometteurs car nous sommes en mesure drsquoinverser une grave maladie geacuteneacutetique raquo Crsquoest pourquoi il est de plus en plus neacutecessaire de renforcer notre action et de trouver drsquoautres financements Parce qursquoil est clair que chaque parent souhaite que son enfant vive heureux et en bonne santeacute
Tout ce que nous faisons nous le faisons pour nos Anges wwwangelmanallianceorg
Pour toute information sur lrsquoAlliance la recherche et drsquoautres questions vous pouvez contacter Betty Willemsen bettywillemsenninafoundationeu
Angelman Today
God only gives us what He is willing to walk us through
-Joell Gingrich Ketcham
ldquo ldquo
ldquo
Adding youtube video
platform to Angelman Today
Video content will include bull Interviews
bull Product Reviews
bull Latest Research
bull How To videos
bull Parent tips and interviews
bull Much more
Email Lizzieangelmantodaycom if you
would like to participate
Announcements
We are expanding Angelman Today to include a new
platform of video media
To do this we will be making some changes that will
include the publishing schedule for the online digital
magazine Starting in January 2016 we will start
publishing Angelman Today quarterly 4 information-
packed editions a year
Subscriptions of the online magazine will remain
FREE
Subscribing to the YouTube channel is also FREE
We welcome all Angelman foundations parents
care takers physicians and researchers to
contribute Deadlines are
bull December 10
bull March 10
bull June 10
bull September 10
Show your support for Angelman Today and subscribe
WWWANGELMANTODAYCOM November December 2015
Toby B Kroger in Kentucky Scotty at Wegmans in NY
There are many challenges that come along with being
a caretaker of an individual with special needs
including a task that for many may be simple a trip
that we all must do regularly which is shop for
groceries
The best inventions are usually created from a persons
desire to satisfy a need or to solve a problem they
encounter in their own life One set of parents did just
that Drew Ann and David Long have three children
Caroline is their middle child she was diagnosed with
Rett syndrome The challenge came when Drew Ann
went grocery shopping with her kids She had a
Making Shopping A Little
Easier This Holiday Season helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
toddler and Caroline in her wheelchair The problem
presented itself as in the form of a question ldquoHow
do you push a wheelchair and a shopping cartrdquo
Drew Ann had the answer She was able to vision the
cart and sat in her car and sketched it out on paper
She knew she was not the first to have this dilemma
nor would she be the last
Carolinersquos Carts can now be found at some select
retailers You can visit wwwcarolinescartcom to
find a location near you
Parents we need your help We at Angelman Today
are calling for action There are not enough stores
with Carolinersquos carts Parents it is up to us We are
the ones that need them so we have to be the ones to
request them at our local retailers Some stores like
Target Shoprite Publix Lucky and Wegmans are
starting to have them available If they are not
currently at a store near you just ask the manager
You will be helping not only your family but the
many other families that may not yet even know this
helpful cart exists
WWWANGELMANTODAYCOM November December 2015
Thank you A big thanks to all of the contributors that help bring you Angelman Today
Angelman Today Supporters
If I Need Help ndash wwwifineedhelporg
All of the Angelman and
Associated
Foundations
across the globe
Additional Contributors
Kat Adams
Maria Cano Moraleda
Erin Bates
Angelman Today is a lifestyle guide to achieving better health for individuals with Angelman Syndrome and their families It is written with your needs in mind but is not a substitute for consulting with your physician or other health care providers The publisher and authors are not responsible for any adverse effects or consequences resulting from the use of the suggestions products or procedures that appear on this website or online magazine All matters regarding your health should be supervised by a licensed health care physician Copyright 2014 Angelman Today LLC All rights reserved worldwide
CONTRIBUTORS
Marilyn Kennedy
Assistant Editor Marilynangelmantodaycom
Sybille Kraft Bellamy
Parent Expert in Nutrition
And LGIT diet FacebookcomAngelmanSyndromeDiet
STAY CONNECTED ON THE GO
DOWNLOAD THE NEW ISSUU APP TODAY ON GOOGLE PLAY
AND NOW IN THE APP STORE
Dr Harry Angelman
1915 ndash 1996
Dr Harry Angelman was an English physician
who identified what is now known as Angelman
Syndrome
He first observed three children who were not
related but showed similar symptoms of severe
intellectual delay stiff jerky gait lack of speech
seizures motor disorders and happy demeanors
Although Dr Angelman was born in Birkenhead
England he was an enthusiast for the language
and country of Italy And it was while vacationing
in Italy he observed an oil painting called A Boy
with a Puppet by the renaissance artist Giovanni
Francesco Caroto at the Castelvecchio museum in
Verona Reminded of the children hersquod observed
Dr Angelman published a paper in 1965 that
described what he called ldquopuppet childrenrdquo At
this time his paper was not immediately
recognized as important
It wasnrsquot until 1982 when Charles A Williams
and Jaime L Frias of the department of Pediatrics
Division of Genetics University of Florida
College of Medicine Gainesville submitted a
paper to the American Journal of Medical
Genetics reporting studies of six patients and
comparing their data to those from previous
reports - severe developmental delay ldquopuppet-
likerdquo gait craniofacial abnormalities and frequent
episodes of laughter- that it became clear the
syndrome was more common than previously
thought They proposed the name of this disorder
be changed to Angelman Syndrome
The History of Angelman Syndrome
Angelman Today
Books Recommended by Parents
Connect with us on
Thanks for your support
Please Share Angelman Today
wwwangelmantodaycom
Epilepsy Awareness
November is Epilepsy Awareness Month
Did you know
-1 in 10 people in the US have had a seizure
-The majority of individuals with Angelman Syndrome have Epilepsy
For more info visit
wwwepilepsyfoundationorg
We are running a crowdfunding
project to raise awareness and
funds to the Portuguese Angelman
cause
To donate andor get more
information
httppplcomptencausasum-
km-por-um-sorriso
-----------------
WWWANGELMANTODAYCOM November December 2015
ALWAYS
PRESUME
COMPETENCE
- Linda Rafert Yoakam
Angelman Today
ldquo
ldquo
WWWANGELMANTODAYCOM November December 2015
Angels in Action Celebrating the Abilities of our Angels
By Lyn Barnes
Daniel is 25years old lives in Dubbo NSW
Australia and has the best social life of anyone I
know (including me) He loves to go anywhere and
socialize with anyone He goes ten pin bowling to
the zoo the movies the local pub for lunch and
does Zumba twice a week
His smile is infectious and even though he suffers
daily from chronic pain that smile never leaves his
face making everyone who comes across him smile
as well
My angel Our angel half of Dubbos angel
Angelman Syndrome is something we all want to see cured But it has made me a better person It has taught me more about unconditional love than anything I ever learned in Sunday School or from any love song Were all on a journey to see our children made whole but maybe theyre making us whole in the processldquo
-Regie Hamm
Angelman Today
ldquo
ldquo
ldquoIf I Need Helprdquo and
ldquoAngelman Todayrdquo
care so much about
this community and
the safety of
individuals with
Angelman
Syndrome Now we
have partnered up to
offer you this great
promotion
WWWANGELMANTODAYCOM November December 2015
For 5 off your 1st purchase enter
promo code Angelman Today
See our video interview
WWWANGELMANTODAYCOM November December 2015
Libro Vivir con un Angel
Se trata de un libro escrito por 25 familias de la
Asociacioacuten contando sus propias experiencias
con un Angelman Un libro imprescindible para
comprender los que diariamente las familias
viven
Se trata de un libro escrito por 25
familias de la Asociacioacuten contando sus
propias experiencias con un Angelman
Un libro imprescindible para comprender
los que diariamente las familias viven
Hemos analizado los precios de envio al
extranjero y sale sobre 10euro cada libro El
que este interasado en que le enviemos
un libro al extranjero debera pagarlo con
tarjeta y a 20euro con gastos de envio
incluidos
Libro Vivir con un Angel para envios extranjero
httpwwwangelman-asaorg
Buy your copy
Compre su copia
From all of us at
WWWANGELMANTODAYCOM November December 2015
New Book ldquoLife with an Angel
ldquoWhat is Angelman Syndromerdquo That is usually
the first question we ask the doctor as soon as our
child is diagnosed with this rare disease And
then come the follow-up questions What can we
do Is there a treatment What is their life
expectancy
As soon as we become aware of the fact that
there is no treatment or cure our whole life is
turned upside down Each individual family deals
with the situation the best way they can Some
choose denial However sooner or later they will
try to contact other families in the same situation
who will be able to understand to share their
own experience and offer support in bad times
and celebrate with us the good times
All Angel families would have loved to hear
about the syndrome from a more positive and
closer point of view than that offered by doctors
And so 25 families belonging to the Spanish
Angelman Syndrome Association decided to
write down their personal stories in the hope of
spreading the word on Angelman Syndrome and
especially with the determination to help those
who in the future will come face to face with this
diagnosis
We want them to know that they are not alone
and that there is a life and hope beyond the
syndrome It may be difficult at times but it will
bring moments of total happiness more than we
could have imagined
And most importantly the book is a tribute to
our sons and daughters it is their lives and their
stories we are sharing with the world a story
they arenrsquot able to explain with words
wwwangelman-asaorg
Click here to buy the digital edition
(ebook 3 euros)
Click here to buy the paper edition
(20 euros shipping included)
Order online
The English version will be published soon
WWWANGELMANTODAYCOM November December 2015
The Angel Wings Foundation is bringing you an Angelman
Today Exclusive Vacation Giveaway
Last year the Angel Wings Foundation hit
upon a novel idea How about giving
someone a vacation Someone who could
really use it hellipsomeone who deserves it
hellipsomeone who might actually need it to re-
set their lives Well we did just that and it
worked out better than we couldrsquove ever
imagined
So this year wersquore doing it again One
deserving Angelman family will win an all
expense paid vacation to a music and wine
event in Napa California called ldquoLive In The
Vinyardrdquo
We realize that this isnrsquot scientific research
or new breakthrough therapy techniques or
an awareness campaign All of those things
are certainly vital and crucial to our
collective journey as Angelman parents We
cheer them on and support them
wholeheartedly But we at the Angel Wings
Foundation want to wrap our arms around
the Angelman community and give hugs
wherever and whenever we can We know
how fatiguing constant caregiving can be
We also know how isolating it can be for the
Angel to only see the same people day in and
day out So this ldquoAngel Week Offrdquo is just as
much for the Angels as it is for the parents
We will send in a male and female caregiver
to the familyrsquos home to give the Angel a
week off as well Activities will be planned
every day that donrsquot include mom and dad
After all everybody needs a break from
mom and dad sometimes Besides mom and
dad will be getting a massage or golfing or
horseback riding or drinking wine and
listening to music somewhere in Northern
California
So herersquos what you do hellipwrite an essay (500
words or less) describing your Angelman
journey We all have one and they are all
deserving of a great vacation But we can only
do one at a time right now hellipsorry An all-star
panel of judges will read the entries and
narrow them down to a top 5 The they will re-
read them and ONE family will win the
vacation
The panel consists of people from Make-A-
Wish Best Buddies Special Olympics
Angelman Today and one board member from
the Angel Wings Foundation I donrsquot read
them I just get to call you and tell you yoursquove
won hellipI love that part
All entries must be in by Thanksgiving Day
2015 A winner will be chosen and announced
on Christmas Eve hellipwhat a great Christmas
gift Then we will start making arrangements
for the vacation that will take place in April of
2016 A family member or designated care
giver (in charge) must be present with our
caregivers So keep that part in mind Safety
first
Last yearrsquos winners Mary and Rory were so
moved by the experience they have asked if
they can donate to this yearrsquos winner I think
that speaks for itself They sent in a video to
encourage everyone to enter
Hopefully one day wersquoll be able to do this
many times a year But for this year we canrsquot
wait to read the entries and award some
amazing Angel family a break and a time they
will never forget
We love you all Now get to writing
Email they essay entry to
AngelsWeekOffangelmantodaycom
WWWANGELMANTODAYCOM November December 2015
WWWANGELMANTODAYCOM November December 2015
WOULD YOU LIKE TO CONTRIBUTE
We welcome all Angelman foundations parents care takers physicians and researchers
Email articles and pictures to Lizzieangelmantodaycom
Holiday Gift Guide
Radiance Floor Lamp Night Light Star Projector
Chewbeads Military Dog Tags
Krazy Gears Sensory Weighted Blanket
Senseez Vibrating Pillow Crazy Aaronrsquos Thinking Putty
By Kat Adams Melissa is 12 years old and has Angelman
syndrome UPD She loves to play games and
laugh at her big Brother Jacobs jokes she has a
wicked sense of humor
Melissa won the Child of courage award at an
event in her home town I was very proud that
her fellow citizens chose to recognize her daily
struggles and her massive achievements in this
way
Melissa experiences life in such a way that
every day is an adventure she brings so much
love and happiness into both mine and Jacobs
lives
We have set up a small Foundation in Melissas
name to help support research into a cure for
Angelman syndrome and have had many good
times with our fundraising events taking part
in things such as skydiving and even carrying
Melissa in a sedan chair for 5 miles
Life is never dull with a child like Melissa
Lots of tears along the way but much more
laughter
Angels in Action
Last year was such a success we are doing it again Enter a picture of your loved one
with Angelman Syndrome Get your friends and family voting and they could be on
the January cover of Angelman Today Watch our Facebook page for details
2 16
2014 Cover
2015 Cover
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
The Meerdo Family
Kathryn Matt and Stetson from Chip at AS event
Brian and Drew Fitzgerald annual Blarney CupYaron Werber
Because of you AS families benefit
THANK YOU to our phenomenal supporters this past yearHoly Cow Our AS friends and families have truly impressed our socks off this year Your creativity and dedication is shattering past records and touching lives deeply We at the ASF are humbled and honored to have had independent fundraisers raise more than $100000 for the AS community to date
Check out what just a few of our families have done in 2015
Family Fun Day - Michael Drzewiecki and company
Berto and Minnie with their daughter Pam
Annual Tractor Cruise - Horton Kansas
Because of you AS families benefit
THANK YOU to every individual and organization that played a role in these fundraisers either by spearheading attending or donating to these events
Blarney Cup Paddle Tournament The Fitzgeraldrsquos in Ohio $25450
Meerdo Annual Golf Tournament The Meerdorsquos in Utah $19980
Chip Away at AS Golf Tournament The Elyrsquos in Georgia $11683
Tractor Cruise The Olsenrsquos in Kansas $5350
Cure for the Angels Family Day Angelique Tuthill in New York $4747
Discover Day Camp Christina Polleto in New York $4309
Yaron Werber of Ovid Therapeutics raised $3953 for ASF at the Brooklyn Rock n Roll 12 Marathon
Hauser Junior High School Fundraiser in Westchester New York $3535
Custom Harley Davidson Bike Show Noel Perez and Berto Castellanos in California $3360
Pardi Gras Promotion and Sales Proceeds $2500
Tierrarsquos Event $2435
Family Fun Day Michael Drzewiecki in New York $2338
The Hope Classic at Lower Merion High School in Medinah NY $2342
Run Like A Mother 5k Tiffany Cruikshank in Hinsdale Illinois $1880
Oakland Arsquos Fundraiser in California $1345
7th Street Sportsmen Club Fundraiser in Pennsylvania $1000
THANK YOU to all of the fundraisers who have brought in more than $100000 of donations in 2015 We are very excited at the possibilities and creativity our families will bring in 2016
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Summit4Angelman
Father to young boy with AS climbs Mt Kilimanjaro to raise awareness of ASFrom Kyle himself
Irsquom going to take 8 days to climb up the worldrsquos tallest freestanding mountain to raise awareness for Angelman syndrome and Irsquove realized during my training that I donrsquot think I can do it alone Of course Irsquom going up with a great group looking forward to helping the cause in any way they can but Irsquove found such strength in keeping focused on why Irsquom doing this and every time I ldquopicturerdquo my son Madden it keeps me going when I desperately want to quit or cut corners in training If I keep in mind how my son never quits and overcomes his challenges with a smile I realize this mountain isnrsquot quite as tall I as first thought The point ishellipwithout Madden this climb seems a lot more difficult Which got me thinking what if I have an army of Angels with me every step of the climb Irsquom asking you to send me a picture of your Angel so I can take them to the top of Kilimanjaro with me Each photo and story you send me will provide the strength I need to keep going when the air is thin the weather is cold and my head is pounding I will do everything in my power to get to the top with them My chances will be far better with each person I take up with me If I make it to the Summit I promise they will see the view with me at 19341 feet
Visit Kylersquos personal blog at wwwsummit4angelmancom to find out more about Kylersquos journey
How can you helpbull Share your personal Summit story of accomplishment
on Facebook and Twitter and include the hashtag Summit4Angelman
bull Introduce Angelman syndrome to new peoplehellipKylersquos goal is to raise awareness of AS and he wants to reach 19341mdashthatrsquos one new person for every foot that Mt Kilimanjaro is tall
bull Share a photo of your loved one with AS (send to kyrooneyoutlookcom) for Kyle to take to the top of Mt Kilimanjaro
Looks Whatrsquos Shouted From the Mountaintop Angelman Syndrome Awareness
ASF Communication Training Series
Having challenges with helping your loved one with AS better communicate We have the resource for you In collaboration with several AS communication experts the ASF has created a FREE communication resource that you can access AT ANY TIME the ASF Communication Training Series This Series takes all of the hours of great communication workshops and breaks them down into smaller digestible parts so that you and your individual with AS can reach herhis greatest communication success at any age Using web-based teaching the Series is designed to be sequential and you can join at any time and proceed through the training at your childrsquos pace of learning Click here for more and to access the schedule past webinar recordings and handouts
Meet the experts
ERIN SHELDON M EDErin earned her Masters of Education studying the learning characteristics of students with AS Erin works as an assistive technology consultant with a focus on supporting students with complex learning needs to access the general curriculum in inclusive classrooms She founded the Angelman Literacy
Project an initiative to support families and school teams to foster emergent literacy development in students with AS She presents professional development workshops and webinars across North America and Europe including at conferences such as Closing the Gap and ATIA and has authored manuals book chapters and journal articles
DR CAROLINE MUSSELWHITE CCC-SLPDr Musselwhite is an assistive technology specialist with more than 35 years of experience working with children and adolescents with significant disabilities in a variety of settings including Head Start developmental day programs homes and the public schools Dr
Musselwhite has written a number of textbooks and ldquohow-tordquo books on a range of topics and has also authored many books and software programs for youth with disabilities She has presented thousands of workshops throughout North and South America Australia Europe and Africa and is a founding member and Fellow of the International Society for Augmentative and Alternative Communication
MAUREEN NEVERS MS CCC-SLP LICENSED SPEECH-LANGUAGE PATHOLOGIST AUGMENTATIVE COMMUNICATION SPECIALISTMaureen earned a BS in Communication Disorders from the University of Massachusetts at Amherst in 1991 then earned a MS in Speech-Language
Pathology from the University of Vermont in 1993 Her graduate work included participation in a comprehensive training program in AAC She worked for Easter Seals in Massachusetts for eleven years before joining the Center on Disability and Community Inclusion at the University of Vermont eleven years ago She currently works as an Augmentative Communication Specialist with the Vermont I-Team where she is part of an interdisciplinary team that consults with school teams across the state to support individuals with complex communication needs
Communication training you can understand and use
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
MARY-LOUISE BERTRAMMary-Louise Bertram is a qualified Early Childhood Teacher from Perth Western Australia with special qualifications and training in the areas of communication sensory processing and literacy supports for children with complex disabilities Mary-Louise became involved with the AS community in 2007 while
teaching a class of six children four of whom had AS (all Del +) Since then Mary-Louise has worked with people with AS of all ages across Western Australia in the first statewide comprehensive AS-specific communication intervention of its kind She has supported families across the globe to advocate for their childrsquos right to high-quality communication and education intervention Mary-Louise currently works in private practice supporting individuals with complex disabilities (and their families) with communication and literacy
Families are also encouraged to support each other and share tips via the Seriesrsquo private ASF Communication Training Series Facebook group
Twenty years ago we never would have imagined that so many generous people like you would open their hearts to help those affected by AS Your generosity eases the financial and emotional burden on families by supporting our family resource program and has helped our researchers make significant breakthroughs in treatments and potential cures for AS Without you there would be no us We are forever grateful for your support
Click here to make a contribution to the ASFrsquos end-of-year appeal All donations are 100 tax deductible per IRS regulations
Itrsquos ALL because of YOU
WWWANGELMANTODAYCOM November December 2015
By Cass Gamero
My sons name is Alexander and he was
recently diagnosed in July 2015 Hes only
18 months old and is loved by all Anyone
who meets him cant help but be
memorized by his long eye lashes amp
beaming smile When you see him you
cant help but smile My son also has some
vision problems but is getting better He
loves his toy keys and could recognize his
bottle from anywhere Hes lovable
friendly joyful and bright
Angels in Action Celebrating the Abilities of our Angels
Gareth Edwards (Star Wars Director) acknowledges
The force is strong in the Angelman Alliance
It is often said that parents will do anything for their children A rare
disease called Angelman Syndrome is proving testimony to this fact
Driven by an unstoppable love for their children parent organisations
from 15 countries have formed an alliance to work together to progress
research that may help their children to speak run and live life to their
full potential As Gareth Edwards patron of the UK Charity that hosted
this yearsrsquo conference in Liverpool England said during his speech at
the conference ldquoAngels go further and beyondrdquo
With the support of ISIS pharmaceuticals recent findings by professor Art Beaudet (USA) are expected to
progress to clinical trials Results from other researchers in collaboration with pharmaceutical companies
also have promising results to improve the quality of life for children amp adults with Angelman Syndrome
Initially having to overcome language barriers cultural differences and different legal systems the parent
organisations created an international Alliance on Angelman Syndrome (ASA) to drive research forward
pooling resources and funds In the first two years over half a million eurorsquos (550000-) was raised with
more parent organisations worldwide continuing to join The parent organisations met this year in
Liverpool during the 50th anniversary of Angelman Syndrome At this conference representatives came
from England Ireland Belgium Netherlands Germany Austria France Italy Portugal Japan Israel
Hungary Poland Finland and Switzerland
As professor Ype Elgersma (NL) said ldquoThese are very exciting times because we might actually have the
possibility to reverse a severe genetic diseaserdquo Therefore the need to get things going is stronger than ever
within the Alliance and the need for more funding is evident Because in the end every parent wants their
child to be as happy and healthy as possible
Everything we do we do for our Angels wwwangelmanallianceor g
For information about the Alliance the research and other questions you can contact Betty Willemsen
bettywillemsenninafoundationeu
Dr Harry Angelman
1915 ndash 1996
El Dr Harry Angelman fue un meacutedico Ingleacutes quien
identificoacute lo que hoy en diacutea se llama Siacutendrome de
Angelman
Nacioacute en Birkenhead Inglaterra Le fascinaba el idioma
y la cultura de Italia
El fue el primero quien observoacute treacutes nintildeos no
relacionados quienes demostraban siacutentomas similares ndash
atrasos severos intelectuales un modo de andar que era
espasmoacutedico y riacutegido ausencia del hablar
convulsiones y una disposicioacuten contento
Luego duranted unas vacaciones en Italia descubrioacute
una pintura llamada ldquoUn Nintildeo con una Marionetardquo
creado por el artista del Renascimiento Giovanni
Francesco Caroto en el museo Castelvecchio en
Verona La pintura le hizo pensar en los nintildeos que eran
sus pacientes y le condujo a publicar un artiacuteculo
profesional en el antildeo 1965 que describiacutea lo que el
llamaba ldquoNintildeos Marionetasrdquo En aquel momento la
importancia de su artiacuteculo no fue reconocido como algo
importante
No pasoacute nada mas hasta Charles A Williams y Jaime L
Frias del departamento de Pediacuteatra Divisiacuteon de
Geneacutetica de la Universidad de Florida Colegio de
Medicina de Gainesville Florida sometieron un
artiacuteculo a la Revista Americana de Geneacutetica Meacutedica
explicando estudios de seacuteis pacientes comparando sus
datos con los de informes previos ndash incluyendo atrasos
intelectuales severos el andar como un ldquomarionetardquo
anormalidades cranio-faciales y espisodios frecuentes
de risas De repente se notoacute que eso era mucho maacutes
comuacuten de lo que anteriormente se creiacutea Ellos
propusieron ponerle el nombre de Siacutendrome de
Angelman en honor del Dr Harry Angelman
La Historia del Siacutendrome de Angelman (Spanish Translation)
Angelman Today
Gareth Edwards (Directeur de Star Wars) lrsquoaffirme la Force est avec lrsquoAngelman Syndrome Alliance (ASA)
On dit souvent que les parents feraient tout pour leurs enfants et crsquoest ce qui se veacuterifie agrave lrsquooccasion drsquoune maladie rare appeleacutee le syndrome drsquoAngelman Animeacutees drsquoun amour infini pour leurs enfants des organisations parentales de 15 pays ont formeacute une alliance dans le but de faire avancer la recherche qui permettra agrave ces enfants de parler courir et vivre leur vie pleinement Comme lrsquoaffirmait dans son intervention Gareth Edwards soutien de lrsquoassociation de bienfaisance anglaise qui accueillait cette anneacutee la confeacuterence internationale agrave Liverpool laquo Les Anges vont plus loin et au-delagrave raquo
De reacutecentes deacutecouvertes dues par le Professeur Art Beaudet (USA) avec le soutien des laboratoires pharmaceutiques ISIS vont conduire agrave des essais cliniques Drsquoautres chercheurs soutenus par des socieacuteteacutes pharmaceutiques ont obtenu des reacutesultats prometteurs pour ameacuteliorer la qualiteacute de vie des enfants et des adultes atteints du syndrome drsquoAngelman
Surmontant les obstacles dus aux langues aux diffeacuterences culturelles et leacutegales les organisations parentales ont creacuteeacute lrsquoAlliance du Syndrome drsquoAngelman (ASA) visant agrave faire progresser la recherche et agrave mettre en commun les ressources et les financements Dans les deux premiegraveres anneacutees 550 000 euro ont eacuteteacute reacuteunis et drsquoautres organisations venues du monde entier souhaitent srsquoy associer Cette anneacutee les organisations de parents se sont rencontreacutees agrave Liverpool dans le cadre du 50egraveme anniversaire de lrsquoidentification du syndrome Eacutetaient repreacutesenteacutes lrsquoAngleterre lrsquoIrlande la Belgique les Pays Bas lrsquoAllemagne lrsquoAutriche la France lrsquoItalie le Portugal le Japon Israeumll la Hongrie la Pologne la Finlande et la Suisse
Comme le disait le Professeur Ype Elgersma (NL) laquo Nous vivons des temps prometteurs car nous sommes en mesure drsquoinverser une grave maladie geacuteneacutetique raquo Crsquoest pourquoi il est de plus en plus neacutecessaire de renforcer notre action et de trouver drsquoautres financements Parce qursquoil est clair que chaque parent souhaite que son enfant vive heureux et en bonne santeacute
Tout ce que nous faisons nous le faisons pour nos Anges wwwangelmanallianceorg
Pour toute information sur lrsquoAlliance la recherche et drsquoautres questions vous pouvez contacter Betty Willemsen bettywillemsenninafoundationeu
Angelman Today
God only gives us what He is willing to walk us through
-Joell Gingrich Ketcham
ldquo ldquo
ldquo
Adding youtube video
platform to Angelman Today
Video content will include bull Interviews
bull Product Reviews
bull Latest Research
bull How To videos
bull Parent tips and interviews
bull Much more
Email Lizzieangelmantodaycom if you
would like to participate
Announcements
We are expanding Angelman Today to include a new
platform of video media
To do this we will be making some changes that will
include the publishing schedule for the online digital
magazine Starting in January 2016 we will start
publishing Angelman Today quarterly 4 information-
packed editions a year
Subscriptions of the online magazine will remain
FREE
Subscribing to the YouTube channel is also FREE
We welcome all Angelman foundations parents
care takers physicians and researchers to
contribute Deadlines are
bull December 10
bull March 10
bull June 10
bull September 10
Show your support for Angelman Today and subscribe
WWWANGELMANTODAYCOM November December 2015
Toby B Kroger in Kentucky Scotty at Wegmans in NY
There are many challenges that come along with being
a caretaker of an individual with special needs
including a task that for many may be simple a trip
that we all must do regularly which is shop for
groceries
The best inventions are usually created from a persons
desire to satisfy a need or to solve a problem they
encounter in their own life One set of parents did just
that Drew Ann and David Long have three children
Caroline is their middle child she was diagnosed with
Rett syndrome The challenge came when Drew Ann
went grocery shopping with her kids She had a
Making Shopping A Little
Easier This Holiday Season helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
toddler and Caroline in her wheelchair The problem
presented itself as in the form of a question ldquoHow
do you push a wheelchair and a shopping cartrdquo
Drew Ann had the answer She was able to vision the
cart and sat in her car and sketched it out on paper
She knew she was not the first to have this dilemma
nor would she be the last
Carolinersquos Carts can now be found at some select
retailers You can visit wwwcarolinescartcom to
find a location near you
Parents we need your help We at Angelman Today
are calling for action There are not enough stores
with Carolinersquos carts Parents it is up to us We are
the ones that need them so we have to be the ones to
request them at our local retailers Some stores like
Target Shoprite Publix Lucky and Wegmans are
starting to have them available If they are not
currently at a store near you just ask the manager
You will be helping not only your family but the
many other families that may not yet even know this
helpful cart exists
WWWANGELMANTODAYCOM November December 2015
Thank you A big thanks to all of the contributors that help bring you Angelman Today
Angelman Today Supporters
If I Need Help ndash wwwifineedhelporg
All of the Angelman and
Associated
Foundations
across the globe
Additional Contributors
Kat Adams
Maria Cano Moraleda
Erin Bates
Angelman Today is a lifestyle guide to achieving better health for individuals with Angelman Syndrome and their families It is written with your needs in mind but is not a substitute for consulting with your physician or other health care providers The publisher and authors are not responsible for any adverse effects or consequences resulting from the use of the suggestions products or procedures that appear on this website or online magazine All matters regarding your health should be supervised by a licensed health care physician Copyright 2014 Angelman Today LLC All rights reserved worldwide
CONTRIBUTORS
Marilyn Kennedy
Assistant Editor Marilynangelmantodaycom
Sybille Kraft Bellamy
Parent Expert in Nutrition
And LGIT diet FacebookcomAngelmanSyndromeDiet
STAY CONNECTED ON THE GO
DOWNLOAD THE NEW ISSUU APP TODAY ON GOOGLE PLAY
AND NOW IN THE APP STORE
Dr Harry Angelman
1915 ndash 1996
Dr Harry Angelman was an English physician
who identified what is now known as Angelman
Syndrome
He first observed three children who were not
related but showed similar symptoms of severe
intellectual delay stiff jerky gait lack of speech
seizures motor disorders and happy demeanors
Although Dr Angelman was born in Birkenhead
England he was an enthusiast for the language
and country of Italy And it was while vacationing
in Italy he observed an oil painting called A Boy
with a Puppet by the renaissance artist Giovanni
Francesco Caroto at the Castelvecchio museum in
Verona Reminded of the children hersquod observed
Dr Angelman published a paper in 1965 that
described what he called ldquopuppet childrenrdquo At
this time his paper was not immediately
recognized as important
It wasnrsquot until 1982 when Charles A Williams
and Jaime L Frias of the department of Pediatrics
Division of Genetics University of Florida
College of Medicine Gainesville submitted a
paper to the American Journal of Medical
Genetics reporting studies of six patients and
comparing their data to those from previous
reports - severe developmental delay ldquopuppet-
likerdquo gait craniofacial abnormalities and frequent
episodes of laughter- that it became clear the
syndrome was more common than previously
thought They proposed the name of this disorder
be changed to Angelman Syndrome
The History of Angelman Syndrome
Angelman Today
Books Recommended by Parents
Connect with us on
Thanks for your support
Please Share Angelman Today
wwwangelmantodaycom
We are running a crowdfunding
project to raise awareness and
funds to the Portuguese Angelman
cause
To donate andor get more
information
httppplcomptencausasum-
km-por-um-sorriso
-----------------
WWWANGELMANTODAYCOM November December 2015
ALWAYS
PRESUME
COMPETENCE
- Linda Rafert Yoakam
Angelman Today
ldquo
ldquo
WWWANGELMANTODAYCOM November December 2015
Angels in Action Celebrating the Abilities of our Angels
By Lyn Barnes
Daniel is 25years old lives in Dubbo NSW
Australia and has the best social life of anyone I
know (including me) He loves to go anywhere and
socialize with anyone He goes ten pin bowling to
the zoo the movies the local pub for lunch and
does Zumba twice a week
His smile is infectious and even though he suffers
daily from chronic pain that smile never leaves his
face making everyone who comes across him smile
as well
My angel Our angel half of Dubbos angel
Angelman Syndrome is something we all want to see cured But it has made me a better person It has taught me more about unconditional love than anything I ever learned in Sunday School or from any love song Were all on a journey to see our children made whole but maybe theyre making us whole in the processldquo
-Regie Hamm
Angelman Today
ldquo
ldquo
ldquoIf I Need Helprdquo and
ldquoAngelman Todayrdquo
care so much about
this community and
the safety of
individuals with
Angelman
Syndrome Now we
have partnered up to
offer you this great
promotion
WWWANGELMANTODAYCOM November December 2015
For 5 off your 1st purchase enter
promo code Angelman Today
See our video interview
WWWANGELMANTODAYCOM November December 2015
Libro Vivir con un Angel
Se trata de un libro escrito por 25 familias de la
Asociacioacuten contando sus propias experiencias
con un Angelman Un libro imprescindible para
comprender los que diariamente las familias
viven
Se trata de un libro escrito por 25
familias de la Asociacioacuten contando sus
propias experiencias con un Angelman
Un libro imprescindible para comprender
los que diariamente las familias viven
Hemos analizado los precios de envio al
extranjero y sale sobre 10euro cada libro El
que este interasado en que le enviemos
un libro al extranjero debera pagarlo con
tarjeta y a 20euro con gastos de envio
incluidos
Libro Vivir con un Angel para envios extranjero
httpwwwangelman-asaorg
Buy your copy
Compre su copia
From all of us at
WWWANGELMANTODAYCOM November December 2015
New Book ldquoLife with an Angel
ldquoWhat is Angelman Syndromerdquo That is usually
the first question we ask the doctor as soon as our
child is diagnosed with this rare disease And
then come the follow-up questions What can we
do Is there a treatment What is their life
expectancy
As soon as we become aware of the fact that
there is no treatment or cure our whole life is
turned upside down Each individual family deals
with the situation the best way they can Some
choose denial However sooner or later they will
try to contact other families in the same situation
who will be able to understand to share their
own experience and offer support in bad times
and celebrate with us the good times
All Angel families would have loved to hear
about the syndrome from a more positive and
closer point of view than that offered by doctors
And so 25 families belonging to the Spanish
Angelman Syndrome Association decided to
write down their personal stories in the hope of
spreading the word on Angelman Syndrome and
especially with the determination to help those
who in the future will come face to face with this
diagnosis
We want them to know that they are not alone
and that there is a life and hope beyond the
syndrome It may be difficult at times but it will
bring moments of total happiness more than we
could have imagined
And most importantly the book is a tribute to
our sons and daughters it is their lives and their
stories we are sharing with the world a story
they arenrsquot able to explain with words
wwwangelman-asaorg
Click here to buy the digital edition
(ebook 3 euros)
Click here to buy the paper edition
(20 euros shipping included)
Order online
The English version will be published soon
WWWANGELMANTODAYCOM November December 2015
The Angel Wings Foundation is bringing you an Angelman
Today Exclusive Vacation Giveaway
Last year the Angel Wings Foundation hit
upon a novel idea How about giving
someone a vacation Someone who could
really use it hellipsomeone who deserves it
hellipsomeone who might actually need it to re-
set their lives Well we did just that and it
worked out better than we couldrsquove ever
imagined
So this year wersquore doing it again One
deserving Angelman family will win an all
expense paid vacation to a music and wine
event in Napa California called ldquoLive In The
Vinyardrdquo
We realize that this isnrsquot scientific research
or new breakthrough therapy techniques or
an awareness campaign All of those things
are certainly vital and crucial to our
collective journey as Angelman parents We
cheer them on and support them
wholeheartedly But we at the Angel Wings
Foundation want to wrap our arms around
the Angelman community and give hugs
wherever and whenever we can We know
how fatiguing constant caregiving can be
We also know how isolating it can be for the
Angel to only see the same people day in and
day out So this ldquoAngel Week Offrdquo is just as
much for the Angels as it is for the parents
We will send in a male and female caregiver
to the familyrsquos home to give the Angel a
week off as well Activities will be planned
every day that donrsquot include mom and dad
After all everybody needs a break from
mom and dad sometimes Besides mom and
dad will be getting a massage or golfing or
horseback riding or drinking wine and
listening to music somewhere in Northern
California
So herersquos what you do hellipwrite an essay (500
words or less) describing your Angelman
journey We all have one and they are all
deserving of a great vacation But we can only
do one at a time right now hellipsorry An all-star
panel of judges will read the entries and
narrow them down to a top 5 The they will re-
read them and ONE family will win the
vacation
The panel consists of people from Make-A-
Wish Best Buddies Special Olympics
Angelman Today and one board member from
the Angel Wings Foundation I donrsquot read
them I just get to call you and tell you yoursquove
won hellipI love that part
All entries must be in by Thanksgiving Day
2015 A winner will be chosen and announced
on Christmas Eve hellipwhat a great Christmas
gift Then we will start making arrangements
for the vacation that will take place in April of
2016 A family member or designated care
giver (in charge) must be present with our
caregivers So keep that part in mind Safety
first
Last yearrsquos winners Mary and Rory were so
moved by the experience they have asked if
they can donate to this yearrsquos winner I think
that speaks for itself They sent in a video to
encourage everyone to enter
Hopefully one day wersquoll be able to do this
many times a year But for this year we canrsquot
wait to read the entries and award some
amazing Angel family a break and a time they
will never forget
We love you all Now get to writing
Email they essay entry to
AngelsWeekOffangelmantodaycom
WWWANGELMANTODAYCOM November December 2015
WWWANGELMANTODAYCOM November December 2015
WOULD YOU LIKE TO CONTRIBUTE
We welcome all Angelman foundations parents care takers physicians and researchers
Email articles and pictures to Lizzieangelmantodaycom
Holiday Gift Guide
Radiance Floor Lamp Night Light Star Projector
Chewbeads Military Dog Tags
Krazy Gears Sensory Weighted Blanket
Senseez Vibrating Pillow Crazy Aaronrsquos Thinking Putty
By Kat Adams Melissa is 12 years old and has Angelman
syndrome UPD She loves to play games and
laugh at her big Brother Jacobs jokes she has a
wicked sense of humor
Melissa won the Child of courage award at an
event in her home town I was very proud that
her fellow citizens chose to recognize her daily
struggles and her massive achievements in this
way
Melissa experiences life in such a way that
every day is an adventure she brings so much
love and happiness into both mine and Jacobs
lives
We have set up a small Foundation in Melissas
name to help support research into a cure for
Angelman syndrome and have had many good
times with our fundraising events taking part
in things such as skydiving and even carrying
Melissa in a sedan chair for 5 miles
Life is never dull with a child like Melissa
Lots of tears along the way but much more
laughter
Angels in Action
Last year was such a success we are doing it again Enter a picture of your loved one
with Angelman Syndrome Get your friends and family voting and they could be on
the January cover of Angelman Today Watch our Facebook page for details
2 16
2014 Cover
2015 Cover
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
The Meerdo Family
Kathryn Matt and Stetson from Chip at AS event
Brian and Drew Fitzgerald annual Blarney CupYaron Werber
Because of you AS families benefit
THANK YOU to our phenomenal supporters this past yearHoly Cow Our AS friends and families have truly impressed our socks off this year Your creativity and dedication is shattering past records and touching lives deeply We at the ASF are humbled and honored to have had independent fundraisers raise more than $100000 for the AS community to date
Check out what just a few of our families have done in 2015
Family Fun Day - Michael Drzewiecki and company
Berto and Minnie with their daughter Pam
Annual Tractor Cruise - Horton Kansas
Because of you AS families benefit
THANK YOU to every individual and organization that played a role in these fundraisers either by spearheading attending or donating to these events
Blarney Cup Paddle Tournament The Fitzgeraldrsquos in Ohio $25450
Meerdo Annual Golf Tournament The Meerdorsquos in Utah $19980
Chip Away at AS Golf Tournament The Elyrsquos in Georgia $11683
Tractor Cruise The Olsenrsquos in Kansas $5350
Cure for the Angels Family Day Angelique Tuthill in New York $4747
Discover Day Camp Christina Polleto in New York $4309
Yaron Werber of Ovid Therapeutics raised $3953 for ASF at the Brooklyn Rock n Roll 12 Marathon
Hauser Junior High School Fundraiser in Westchester New York $3535
Custom Harley Davidson Bike Show Noel Perez and Berto Castellanos in California $3360
Pardi Gras Promotion and Sales Proceeds $2500
Tierrarsquos Event $2435
Family Fun Day Michael Drzewiecki in New York $2338
The Hope Classic at Lower Merion High School in Medinah NY $2342
Run Like A Mother 5k Tiffany Cruikshank in Hinsdale Illinois $1880
Oakland Arsquos Fundraiser in California $1345
7th Street Sportsmen Club Fundraiser in Pennsylvania $1000
THANK YOU to all of the fundraisers who have brought in more than $100000 of donations in 2015 We are very excited at the possibilities and creativity our families will bring in 2016
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Summit4Angelman
Father to young boy with AS climbs Mt Kilimanjaro to raise awareness of ASFrom Kyle himself
Irsquom going to take 8 days to climb up the worldrsquos tallest freestanding mountain to raise awareness for Angelman syndrome and Irsquove realized during my training that I donrsquot think I can do it alone Of course Irsquom going up with a great group looking forward to helping the cause in any way they can but Irsquove found such strength in keeping focused on why Irsquom doing this and every time I ldquopicturerdquo my son Madden it keeps me going when I desperately want to quit or cut corners in training If I keep in mind how my son never quits and overcomes his challenges with a smile I realize this mountain isnrsquot quite as tall I as first thought The point ishellipwithout Madden this climb seems a lot more difficult Which got me thinking what if I have an army of Angels with me every step of the climb Irsquom asking you to send me a picture of your Angel so I can take them to the top of Kilimanjaro with me Each photo and story you send me will provide the strength I need to keep going when the air is thin the weather is cold and my head is pounding I will do everything in my power to get to the top with them My chances will be far better with each person I take up with me If I make it to the Summit I promise they will see the view with me at 19341 feet
Visit Kylersquos personal blog at wwwsummit4angelmancom to find out more about Kylersquos journey
How can you helpbull Share your personal Summit story of accomplishment
on Facebook and Twitter and include the hashtag Summit4Angelman
bull Introduce Angelman syndrome to new peoplehellipKylersquos goal is to raise awareness of AS and he wants to reach 19341mdashthatrsquos one new person for every foot that Mt Kilimanjaro is tall
bull Share a photo of your loved one with AS (send to kyrooneyoutlookcom) for Kyle to take to the top of Mt Kilimanjaro
Looks Whatrsquos Shouted From the Mountaintop Angelman Syndrome Awareness
ASF Communication Training Series
Having challenges with helping your loved one with AS better communicate We have the resource for you In collaboration with several AS communication experts the ASF has created a FREE communication resource that you can access AT ANY TIME the ASF Communication Training Series This Series takes all of the hours of great communication workshops and breaks them down into smaller digestible parts so that you and your individual with AS can reach herhis greatest communication success at any age Using web-based teaching the Series is designed to be sequential and you can join at any time and proceed through the training at your childrsquos pace of learning Click here for more and to access the schedule past webinar recordings and handouts
Meet the experts
ERIN SHELDON M EDErin earned her Masters of Education studying the learning characteristics of students with AS Erin works as an assistive technology consultant with a focus on supporting students with complex learning needs to access the general curriculum in inclusive classrooms She founded the Angelman Literacy
Project an initiative to support families and school teams to foster emergent literacy development in students with AS She presents professional development workshops and webinars across North America and Europe including at conferences such as Closing the Gap and ATIA and has authored manuals book chapters and journal articles
DR CAROLINE MUSSELWHITE CCC-SLPDr Musselwhite is an assistive technology specialist with more than 35 years of experience working with children and adolescents with significant disabilities in a variety of settings including Head Start developmental day programs homes and the public schools Dr
Musselwhite has written a number of textbooks and ldquohow-tordquo books on a range of topics and has also authored many books and software programs for youth with disabilities She has presented thousands of workshops throughout North and South America Australia Europe and Africa and is a founding member and Fellow of the International Society for Augmentative and Alternative Communication
MAUREEN NEVERS MS CCC-SLP LICENSED SPEECH-LANGUAGE PATHOLOGIST AUGMENTATIVE COMMUNICATION SPECIALISTMaureen earned a BS in Communication Disorders from the University of Massachusetts at Amherst in 1991 then earned a MS in Speech-Language
Pathology from the University of Vermont in 1993 Her graduate work included participation in a comprehensive training program in AAC She worked for Easter Seals in Massachusetts for eleven years before joining the Center on Disability and Community Inclusion at the University of Vermont eleven years ago She currently works as an Augmentative Communication Specialist with the Vermont I-Team where she is part of an interdisciplinary team that consults with school teams across the state to support individuals with complex communication needs
Communication training you can understand and use
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
MARY-LOUISE BERTRAMMary-Louise Bertram is a qualified Early Childhood Teacher from Perth Western Australia with special qualifications and training in the areas of communication sensory processing and literacy supports for children with complex disabilities Mary-Louise became involved with the AS community in 2007 while
teaching a class of six children four of whom had AS (all Del +) Since then Mary-Louise has worked with people with AS of all ages across Western Australia in the first statewide comprehensive AS-specific communication intervention of its kind She has supported families across the globe to advocate for their childrsquos right to high-quality communication and education intervention Mary-Louise currently works in private practice supporting individuals with complex disabilities (and their families) with communication and literacy
Families are also encouraged to support each other and share tips via the Seriesrsquo private ASF Communication Training Series Facebook group
Twenty years ago we never would have imagined that so many generous people like you would open their hearts to help those affected by AS Your generosity eases the financial and emotional burden on families by supporting our family resource program and has helped our researchers make significant breakthroughs in treatments and potential cures for AS Without you there would be no us We are forever grateful for your support
Click here to make a contribution to the ASFrsquos end-of-year appeal All donations are 100 tax deductible per IRS regulations
Itrsquos ALL because of YOU
WWWANGELMANTODAYCOM November December 2015
By Cass Gamero
My sons name is Alexander and he was
recently diagnosed in July 2015 Hes only
18 months old and is loved by all Anyone
who meets him cant help but be
memorized by his long eye lashes amp
beaming smile When you see him you
cant help but smile My son also has some
vision problems but is getting better He
loves his toy keys and could recognize his
bottle from anywhere Hes lovable
friendly joyful and bright
Angels in Action Celebrating the Abilities of our Angels
Gareth Edwards (Star Wars Director) acknowledges
The force is strong in the Angelman Alliance
It is often said that parents will do anything for their children A rare
disease called Angelman Syndrome is proving testimony to this fact
Driven by an unstoppable love for their children parent organisations
from 15 countries have formed an alliance to work together to progress
research that may help their children to speak run and live life to their
full potential As Gareth Edwards patron of the UK Charity that hosted
this yearsrsquo conference in Liverpool England said during his speech at
the conference ldquoAngels go further and beyondrdquo
With the support of ISIS pharmaceuticals recent findings by professor Art Beaudet (USA) are expected to
progress to clinical trials Results from other researchers in collaboration with pharmaceutical companies
also have promising results to improve the quality of life for children amp adults with Angelman Syndrome
Initially having to overcome language barriers cultural differences and different legal systems the parent
organisations created an international Alliance on Angelman Syndrome (ASA) to drive research forward
pooling resources and funds In the first two years over half a million eurorsquos (550000-) was raised with
more parent organisations worldwide continuing to join The parent organisations met this year in
Liverpool during the 50th anniversary of Angelman Syndrome At this conference representatives came
from England Ireland Belgium Netherlands Germany Austria France Italy Portugal Japan Israel
Hungary Poland Finland and Switzerland
As professor Ype Elgersma (NL) said ldquoThese are very exciting times because we might actually have the
possibility to reverse a severe genetic diseaserdquo Therefore the need to get things going is stronger than ever
within the Alliance and the need for more funding is evident Because in the end every parent wants their
child to be as happy and healthy as possible
Everything we do we do for our Angels wwwangelmanallianceor g
For information about the Alliance the research and other questions you can contact Betty Willemsen
bettywillemsenninafoundationeu
Dr Harry Angelman
1915 ndash 1996
El Dr Harry Angelman fue un meacutedico Ingleacutes quien
identificoacute lo que hoy en diacutea se llama Siacutendrome de
Angelman
Nacioacute en Birkenhead Inglaterra Le fascinaba el idioma
y la cultura de Italia
El fue el primero quien observoacute treacutes nintildeos no
relacionados quienes demostraban siacutentomas similares ndash
atrasos severos intelectuales un modo de andar que era
espasmoacutedico y riacutegido ausencia del hablar
convulsiones y una disposicioacuten contento
Luego duranted unas vacaciones en Italia descubrioacute
una pintura llamada ldquoUn Nintildeo con una Marionetardquo
creado por el artista del Renascimiento Giovanni
Francesco Caroto en el museo Castelvecchio en
Verona La pintura le hizo pensar en los nintildeos que eran
sus pacientes y le condujo a publicar un artiacuteculo
profesional en el antildeo 1965 que describiacutea lo que el
llamaba ldquoNintildeos Marionetasrdquo En aquel momento la
importancia de su artiacuteculo no fue reconocido como algo
importante
No pasoacute nada mas hasta Charles A Williams y Jaime L
Frias del departamento de Pediacuteatra Divisiacuteon de
Geneacutetica de la Universidad de Florida Colegio de
Medicina de Gainesville Florida sometieron un
artiacuteculo a la Revista Americana de Geneacutetica Meacutedica
explicando estudios de seacuteis pacientes comparando sus
datos con los de informes previos ndash incluyendo atrasos
intelectuales severos el andar como un ldquomarionetardquo
anormalidades cranio-faciales y espisodios frecuentes
de risas De repente se notoacute que eso era mucho maacutes
comuacuten de lo que anteriormente se creiacutea Ellos
propusieron ponerle el nombre de Siacutendrome de
Angelman en honor del Dr Harry Angelman
La Historia del Siacutendrome de Angelman (Spanish Translation)
Angelman Today
Gareth Edwards (Directeur de Star Wars) lrsquoaffirme la Force est avec lrsquoAngelman Syndrome Alliance (ASA)
On dit souvent que les parents feraient tout pour leurs enfants et crsquoest ce qui se veacuterifie agrave lrsquooccasion drsquoune maladie rare appeleacutee le syndrome drsquoAngelman Animeacutees drsquoun amour infini pour leurs enfants des organisations parentales de 15 pays ont formeacute une alliance dans le but de faire avancer la recherche qui permettra agrave ces enfants de parler courir et vivre leur vie pleinement Comme lrsquoaffirmait dans son intervention Gareth Edwards soutien de lrsquoassociation de bienfaisance anglaise qui accueillait cette anneacutee la confeacuterence internationale agrave Liverpool laquo Les Anges vont plus loin et au-delagrave raquo
De reacutecentes deacutecouvertes dues par le Professeur Art Beaudet (USA) avec le soutien des laboratoires pharmaceutiques ISIS vont conduire agrave des essais cliniques Drsquoautres chercheurs soutenus par des socieacuteteacutes pharmaceutiques ont obtenu des reacutesultats prometteurs pour ameacuteliorer la qualiteacute de vie des enfants et des adultes atteints du syndrome drsquoAngelman
Surmontant les obstacles dus aux langues aux diffeacuterences culturelles et leacutegales les organisations parentales ont creacuteeacute lrsquoAlliance du Syndrome drsquoAngelman (ASA) visant agrave faire progresser la recherche et agrave mettre en commun les ressources et les financements Dans les deux premiegraveres anneacutees 550 000 euro ont eacuteteacute reacuteunis et drsquoautres organisations venues du monde entier souhaitent srsquoy associer Cette anneacutee les organisations de parents se sont rencontreacutees agrave Liverpool dans le cadre du 50egraveme anniversaire de lrsquoidentification du syndrome Eacutetaient repreacutesenteacutes lrsquoAngleterre lrsquoIrlande la Belgique les Pays Bas lrsquoAllemagne lrsquoAutriche la France lrsquoItalie le Portugal le Japon Israeumll la Hongrie la Pologne la Finlande et la Suisse
Comme le disait le Professeur Ype Elgersma (NL) laquo Nous vivons des temps prometteurs car nous sommes en mesure drsquoinverser une grave maladie geacuteneacutetique raquo Crsquoest pourquoi il est de plus en plus neacutecessaire de renforcer notre action et de trouver drsquoautres financements Parce qursquoil est clair que chaque parent souhaite que son enfant vive heureux et en bonne santeacute
Tout ce que nous faisons nous le faisons pour nos Anges wwwangelmanallianceorg
Pour toute information sur lrsquoAlliance la recherche et drsquoautres questions vous pouvez contacter Betty Willemsen bettywillemsenninafoundationeu
Angelman Today
God only gives us what He is willing to walk us through
-Joell Gingrich Ketcham
ldquo ldquo
ldquo
Adding youtube video
platform to Angelman Today
Video content will include bull Interviews
bull Product Reviews
bull Latest Research
bull How To videos
bull Parent tips and interviews
bull Much more
Email Lizzieangelmantodaycom if you
would like to participate
Announcements
We are expanding Angelman Today to include a new
platform of video media
To do this we will be making some changes that will
include the publishing schedule for the online digital
magazine Starting in January 2016 we will start
publishing Angelman Today quarterly 4 information-
packed editions a year
Subscriptions of the online magazine will remain
FREE
Subscribing to the YouTube channel is also FREE
We welcome all Angelman foundations parents
care takers physicians and researchers to
contribute Deadlines are
bull December 10
bull March 10
bull June 10
bull September 10
Show your support for Angelman Today and subscribe
WWWANGELMANTODAYCOM November December 2015
Toby B Kroger in Kentucky Scotty at Wegmans in NY
There are many challenges that come along with being
a caretaker of an individual with special needs
including a task that for many may be simple a trip
that we all must do regularly which is shop for
groceries
The best inventions are usually created from a persons
desire to satisfy a need or to solve a problem they
encounter in their own life One set of parents did just
that Drew Ann and David Long have three children
Caroline is their middle child she was diagnosed with
Rett syndrome The challenge came when Drew Ann
went grocery shopping with her kids She had a
Making Shopping A Little
Easier This Holiday Season helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
toddler and Caroline in her wheelchair The problem
presented itself as in the form of a question ldquoHow
do you push a wheelchair and a shopping cartrdquo
Drew Ann had the answer She was able to vision the
cart and sat in her car and sketched it out on paper
She knew she was not the first to have this dilemma
nor would she be the last
Carolinersquos Carts can now be found at some select
retailers You can visit wwwcarolinescartcom to
find a location near you
Parents we need your help We at Angelman Today
are calling for action There are not enough stores
with Carolinersquos carts Parents it is up to us We are
the ones that need them so we have to be the ones to
request them at our local retailers Some stores like
Target Shoprite Publix Lucky and Wegmans are
starting to have them available If they are not
currently at a store near you just ask the manager
You will be helping not only your family but the
many other families that may not yet even know this
helpful cart exists
WWWANGELMANTODAYCOM November December 2015
Thank you A big thanks to all of the contributors that help bring you Angelman Today
Angelman Today Supporters
If I Need Help ndash wwwifineedhelporg
All of the Angelman and
Associated
Foundations
across the globe
Additional Contributors
Kat Adams
Maria Cano Moraleda
Erin Bates
Angelman Today is a lifestyle guide to achieving better health for individuals with Angelman Syndrome and their families It is written with your needs in mind but is not a substitute for consulting with your physician or other health care providers The publisher and authors are not responsible for any adverse effects or consequences resulting from the use of the suggestions products or procedures that appear on this website or online magazine All matters regarding your health should be supervised by a licensed health care physician Copyright 2014 Angelman Today LLC All rights reserved worldwide
CONTRIBUTORS
Marilyn Kennedy
Assistant Editor Marilynangelmantodaycom
Sybille Kraft Bellamy
Parent Expert in Nutrition
And LGIT diet FacebookcomAngelmanSyndromeDiet
STAY CONNECTED ON THE GO
DOWNLOAD THE NEW ISSUU APP TODAY ON GOOGLE PLAY
AND NOW IN THE APP STORE
Dr Harry Angelman
1915 ndash 1996
Dr Harry Angelman was an English physician
who identified what is now known as Angelman
Syndrome
He first observed three children who were not
related but showed similar symptoms of severe
intellectual delay stiff jerky gait lack of speech
seizures motor disorders and happy demeanors
Although Dr Angelman was born in Birkenhead
England he was an enthusiast for the language
and country of Italy And it was while vacationing
in Italy he observed an oil painting called A Boy
with a Puppet by the renaissance artist Giovanni
Francesco Caroto at the Castelvecchio museum in
Verona Reminded of the children hersquod observed
Dr Angelman published a paper in 1965 that
described what he called ldquopuppet childrenrdquo At
this time his paper was not immediately
recognized as important
It wasnrsquot until 1982 when Charles A Williams
and Jaime L Frias of the department of Pediatrics
Division of Genetics University of Florida
College of Medicine Gainesville submitted a
paper to the American Journal of Medical
Genetics reporting studies of six patients and
comparing their data to those from previous
reports - severe developmental delay ldquopuppet-
likerdquo gait craniofacial abnormalities and frequent
episodes of laughter- that it became clear the
syndrome was more common than previously
thought They proposed the name of this disorder
be changed to Angelman Syndrome
The History of Angelman Syndrome
Angelman Today
Books Recommended by Parents
Connect with us on
Thanks for your support
Please Share Angelman Today
wwwangelmantodaycom
ALWAYS
PRESUME
COMPETENCE
- Linda Rafert Yoakam
Angelman Today
ldquo
ldquo
WWWANGELMANTODAYCOM November December 2015
Angels in Action Celebrating the Abilities of our Angels
By Lyn Barnes
Daniel is 25years old lives in Dubbo NSW
Australia and has the best social life of anyone I
know (including me) He loves to go anywhere and
socialize with anyone He goes ten pin bowling to
the zoo the movies the local pub for lunch and
does Zumba twice a week
His smile is infectious and even though he suffers
daily from chronic pain that smile never leaves his
face making everyone who comes across him smile
as well
My angel Our angel half of Dubbos angel
Angelman Syndrome is something we all want to see cured But it has made me a better person It has taught me more about unconditional love than anything I ever learned in Sunday School or from any love song Were all on a journey to see our children made whole but maybe theyre making us whole in the processldquo
-Regie Hamm
Angelman Today
ldquo
ldquo
ldquoIf I Need Helprdquo and
ldquoAngelman Todayrdquo
care so much about
this community and
the safety of
individuals with
Angelman
Syndrome Now we
have partnered up to
offer you this great
promotion
WWWANGELMANTODAYCOM November December 2015
For 5 off your 1st purchase enter
promo code Angelman Today
See our video interview
WWWANGELMANTODAYCOM November December 2015
Libro Vivir con un Angel
Se trata de un libro escrito por 25 familias de la
Asociacioacuten contando sus propias experiencias
con un Angelman Un libro imprescindible para
comprender los que diariamente las familias
viven
Se trata de un libro escrito por 25
familias de la Asociacioacuten contando sus
propias experiencias con un Angelman
Un libro imprescindible para comprender
los que diariamente las familias viven
Hemos analizado los precios de envio al
extranjero y sale sobre 10euro cada libro El
que este interasado en que le enviemos
un libro al extranjero debera pagarlo con
tarjeta y a 20euro con gastos de envio
incluidos
Libro Vivir con un Angel para envios extranjero
httpwwwangelman-asaorg
Buy your copy
Compre su copia
From all of us at
WWWANGELMANTODAYCOM November December 2015
New Book ldquoLife with an Angel
ldquoWhat is Angelman Syndromerdquo That is usually
the first question we ask the doctor as soon as our
child is diagnosed with this rare disease And
then come the follow-up questions What can we
do Is there a treatment What is their life
expectancy
As soon as we become aware of the fact that
there is no treatment or cure our whole life is
turned upside down Each individual family deals
with the situation the best way they can Some
choose denial However sooner or later they will
try to contact other families in the same situation
who will be able to understand to share their
own experience and offer support in bad times
and celebrate with us the good times
All Angel families would have loved to hear
about the syndrome from a more positive and
closer point of view than that offered by doctors
And so 25 families belonging to the Spanish
Angelman Syndrome Association decided to
write down their personal stories in the hope of
spreading the word on Angelman Syndrome and
especially with the determination to help those
who in the future will come face to face with this
diagnosis
We want them to know that they are not alone
and that there is a life and hope beyond the
syndrome It may be difficult at times but it will
bring moments of total happiness more than we
could have imagined
And most importantly the book is a tribute to
our sons and daughters it is their lives and their
stories we are sharing with the world a story
they arenrsquot able to explain with words
wwwangelman-asaorg
Click here to buy the digital edition
(ebook 3 euros)
Click here to buy the paper edition
(20 euros shipping included)
Order online
The English version will be published soon
WWWANGELMANTODAYCOM November December 2015
The Angel Wings Foundation is bringing you an Angelman
Today Exclusive Vacation Giveaway
Last year the Angel Wings Foundation hit
upon a novel idea How about giving
someone a vacation Someone who could
really use it hellipsomeone who deserves it
hellipsomeone who might actually need it to re-
set their lives Well we did just that and it
worked out better than we couldrsquove ever
imagined
So this year wersquore doing it again One
deserving Angelman family will win an all
expense paid vacation to a music and wine
event in Napa California called ldquoLive In The
Vinyardrdquo
We realize that this isnrsquot scientific research
or new breakthrough therapy techniques or
an awareness campaign All of those things
are certainly vital and crucial to our
collective journey as Angelman parents We
cheer them on and support them
wholeheartedly But we at the Angel Wings
Foundation want to wrap our arms around
the Angelman community and give hugs
wherever and whenever we can We know
how fatiguing constant caregiving can be
We also know how isolating it can be for the
Angel to only see the same people day in and
day out So this ldquoAngel Week Offrdquo is just as
much for the Angels as it is for the parents
We will send in a male and female caregiver
to the familyrsquos home to give the Angel a
week off as well Activities will be planned
every day that donrsquot include mom and dad
After all everybody needs a break from
mom and dad sometimes Besides mom and
dad will be getting a massage or golfing or
horseback riding or drinking wine and
listening to music somewhere in Northern
California
So herersquos what you do hellipwrite an essay (500
words or less) describing your Angelman
journey We all have one and they are all
deserving of a great vacation But we can only
do one at a time right now hellipsorry An all-star
panel of judges will read the entries and
narrow them down to a top 5 The they will re-
read them and ONE family will win the
vacation
The panel consists of people from Make-A-
Wish Best Buddies Special Olympics
Angelman Today and one board member from
the Angel Wings Foundation I donrsquot read
them I just get to call you and tell you yoursquove
won hellipI love that part
All entries must be in by Thanksgiving Day
2015 A winner will be chosen and announced
on Christmas Eve hellipwhat a great Christmas
gift Then we will start making arrangements
for the vacation that will take place in April of
2016 A family member or designated care
giver (in charge) must be present with our
caregivers So keep that part in mind Safety
first
Last yearrsquos winners Mary and Rory were so
moved by the experience they have asked if
they can donate to this yearrsquos winner I think
that speaks for itself They sent in a video to
encourage everyone to enter
Hopefully one day wersquoll be able to do this
many times a year But for this year we canrsquot
wait to read the entries and award some
amazing Angel family a break and a time they
will never forget
We love you all Now get to writing
Email they essay entry to
AngelsWeekOffangelmantodaycom
WWWANGELMANTODAYCOM November December 2015
WWWANGELMANTODAYCOM November December 2015
WOULD YOU LIKE TO CONTRIBUTE
We welcome all Angelman foundations parents care takers physicians and researchers
Email articles and pictures to Lizzieangelmantodaycom
Holiday Gift Guide
Radiance Floor Lamp Night Light Star Projector
Chewbeads Military Dog Tags
Krazy Gears Sensory Weighted Blanket
Senseez Vibrating Pillow Crazy Aaronrsquos Thinking Putty
By Kat Adams Melissa is 12 years old and has Angelman
syndrome UPD She loves to play games and
laugh at her big Brother Jacobs jokes she has a
wicked sense of humor
Melissa won the Child of courage award at an
event in her home town I was very proud that
her fellow citizens chose to recognize her daily
struggles and her massive achievements in this
way
Melissa experiences life in such a way that
every day is an adventure she brings so much
love and happiness into both mine and Jacobs
lives
We have set up a small Foundation in Melissas
name to help support research into a cure for
Angelman syndrome and have had many good
times with our fundraising events taking part
in things such as skydiving and even carrying
Melissa in a sedan chair for 5 miles
Life is never dull with a child like Melissa
Lots of tears along the way but much more
laughter
Angels in Action
Last year was such a success we are doing it again Enter a picture of your loved one
with Angelman Syndrome Get your friends and family voting and they could be on
the January cover of Angelman Today Watch our Facebook page for details
2 16
2014 Cover
2015 Cover
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
The Meerdo Family
Kathryn Matt and Stetson from Chip at AS event
Brian and Drew Fitzgerald annual Blarney CupYaron Werber
Because of you AS families benefit
THANK YOU to our phenomenal supporters this past yearHoly Cow Our AS friends and families have truly impressed our socks off this year Your creativity and dedication is shattering past records and touching lives deeply We at the ASF are humbled and honored to have had independent fundraisers raise more than $100000 for the AS community to date
Check out what just a few of our families have done in 2015
Family Fun Day - Michael Drzewiecki and company
Berto and Minnie with their daughter Pam
Annual Tractor Cruise - Horton Kansas
Because of you AS families benefit
THANK YOU to every individual and organization that played a role in these fundraisers either by spearheading attending or donating to these events
Blarney Cup Paddle Tournament The Fitzgeraldrsquos in Ohio $25450
Meerdo Annual Golf Tournament The Meerdorsquos in Utah $19980
Chip Away at AS Golf Tournament The Elyrsquos in Georgia $11683
Tractor Cruise The Olsenrsquos in Kansas $5350
Cure for the Angels Family Day Angelique Tuthill in New York $4747
Discover Day Camp Christina Polleto in New York $4309
Yaron Werber of Ovid Therapeutics raised $3953 for ASF at the Brooklyn Rock n Roll 12 Marathon
Hauser Junior High School Fundraiser in Westchester New York $3535
Custom Harley Davidson Bike Show Noel Perez and Berto Castellanos in California $3360
Pardi Gras Promotion and Sales Proceeds $2500
Tierrarsquos Event $2435
Family Fun Day Michael Drzewiecki in New York $2338
The Hope Classic at Lower Merion High School in Medinah NY $2342
Run Like A Mother 5k Tiffany Cruikshank in Hinsdale Illinois $1880
Oakland Arsquos Fundraiser in California $1345
7th Street Sportsmen Club Fundraiser in Pennsylvania $1000
THANK YOU to all of the fundraisers who have brought in more than $100000 of donations in 2015 We are very excited at the possibilities and creativity our families will bring in 2016
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Summit4Angelman
Father to young boy with AS climbs Mt Kilimanjaro to raise awareness of ASFrom Kyle himself
Irsquom going to take 8 days to climb up the worldrsquos tallest freestanding mountain to raise awareness for Angelman syndrome and Irsquove realized during my training that I donrsquot think I can do it alone Of course Irsquom going up with a great group looking forward to helping the cause in any way they can but Irsquove found such strength in keeping focused on why Irsquom doing this and every time I ldquopicturerdquo my son Madden it keeps me going when I desperately want to quit or cut corners in training If I keep in mind how my son never quits and overcomes his challenges with a smile I realize this mountain isnrsquot quite as tall I as first thought The point ishellipwithout Madden this climb seems a lot more difficult Which got me thinking what if I have an army of Angels with me every step of the climb Irsquom asking you to send me a picture of your Angel so I can take them to the top of Kilimanjaro with me Each photo and story you send me will provide the strength I need to keep going when the air is thin the weather is cold and my head is pounding I will do everything in my power to get to the top with them My chances will be far better with each person I take up with me If I make it to the Summit I promise they will see the view with me at 19341 feet
Visit Kylersquos personal blog at wwwsummit4angelmancom to find out more about Kylersquos journey
How can you helpbull Share your personal Summit story of accomplishment
on Facebook and Twitter and include the hashtag Summit4Angelman
bull Introduce Angelman syndrome to new peoplehellipKylersquos goal is to raise awareness of AS and he wants to reach 19341mdashthatrsquos one new person for every foot that Mt Kilimanjaro is tall
bull Share a photo of your loved one with AS (send to kyrooneyoutlookcom) for Kyle to take to the top of Mt Kilimanjaro
Looks Whatrsquos Shouted From the Mountaintop Angelman Syndrome Awareness
ASF Communication Training Series
Having challenges with helping your loved one with AS better communicate We have the resource for you In collaboration with several AS communication experts the ASF has created a FREE communication resource that you can access AT ANY TIME the ASF Communication Training Series This Series takes all of the hours of great communication workshops and breaks them down into smaller digestible parts so that you and your individual with AS can reach herhis greatest communication success at any age Using web-based teaching the Series is designed to be sequential and you can join at any time and proceed through the training at your childrsquos pace of learning Click here for more and to access the schedule past webinar recordings and handouts
Meet the experts
ERIN SHELDON M EDErin earned her Masters of Education studying the learning characteristics of students with AS Erin works as an assistive technology consultant with a focus on supporting students with complex learning needs to access the general curriculum in inclusive classrooms She founded the Angelman Literacy
Project an initiative to support families and school teams to foster emergent literacy development in students with AS She presents professional development workshops and webinars across North America and Europe including at conferences such as Closing the Gap and ATIA and has authored manuals book chapters and journal articles
DR CAROLINE MUSSELWHITE CCC-SLPDr Musselwhite is an assistive technology specialist with more than 35 years of experience working with children and adolescents with significant disabilities in a variety of settings including Head Start developmental day programs homes and the public schools Dr
Musselwhite has written a number of textbooks and ldquohow-tordquo books on a range of topics and has also authored many books and software programs for youth with disabilities She has presented thousands of workshops throughout North and South America Australia Europe and Africa and is a founding member and Fellow of the International Society for Augmentative and Alternative Communication
MAUREEN NEVERS MS CCC-SLP LICENSED SPEECH-LANGUAGE PATHOLOGIST AUGMENTATIVE COMMUNICATION SPECIALISTMaureen earned a BS in Communication Disorders from the University of Massachusetts at Amherst in 1991 then earned a MS in Speech-Language
Pathology from the University of Vermont in 1993 Her graduate work included participation in a comprehensive training program in AAC She worked for Easter Seals in Massachusetts for eleven years before joining the Center on Disability and Community Inclusion at the University of Vermont eleven years ago She currently works as an Augmentative Communication Specialist with the Vermont I-Team where she is part of an interdisciplinary team that consults with school teams across the state to support individuals with complex communication needs
Communication training you can understand and use
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
MARY-LOUISE BERTRAMMary-Louise Bertram is a qualified Early Childhood Teacher from Perth Western Australia with special qualifications and training in the areas of communication sensory processing and literacy supports for children with complex disabilities Mary-Louise became involved with the AS community in 2007 while
teaching a class of six children four of whom had AS (all Del +) Since then Mary-Louise has worked with people with AS of all ages across Western Australia in the first statewide comprehensive AS-specific communication intervention of its kind She has supported families across the globe to advocate for their childrsquos right to high-quality communication and education intervention Mary-Louise currently works in private practice supporting individuals with complex disabilities (and their families) with communication and literacy
Families are also encouraged to support each other and share tips via the Seriesrsquo private ASF Communication Training Series Facebook group
Twenty years ago we never would have imagined that so many generous people like you would open their hearts to help those affected by AS Your generosity eases the financial and emotional burden on families by supporting our family resource program and has helped our researchers make significant breakthroughs in treatments and potential cures for AS Without you there would be no us We are forever grateful for your support
Click here to make a contribution to the ASFrsquos end-of-year appeal All donations are 100 tax deductible per IRS regulations
Itrsquos ALL because of YOU
WWWANGELMANTODAYCOM November December 2015
By Cass Gamero
My sons name is Alexander and he was
recently diagnosed in July 2015 Hes only
18 months old and is loved by all Anyone
who meets him cant help but be
memorized by his long eye lashes amp
beaming smile When you see him you
cant help but smile My son also has some
vision problems but is getting better He
loves his toy keys and could recognize his
bottle from anywhere Hes lovable
friendly joyful and bright
Angels in Action Celebrating the Abilities of our Angels
Gareth Edwards (Star Wars Director) acknowledges
The force is strong in the Angelman Alliance
It is often said that parents will do anything for their children A rare
disease called Angelman Syndrome is proving testimony to this fact
Driven by an unstoppable love for their children parent organisations
from 15 countries have formed an alliance to work together to progress
research that may help their children to speak run and live life to their
full potential As Gareth Edwards patron of the UK Charity that hosted
this yearsrsquo conference in Liverpool England said during his speech at
the conference ldquoAngels go further and beyondrdquo
With the support of ISIS pharmaceuticals recent findings by professor Art Beaudet (USA) are expected to
progress to clinical trials Results from other researchers in collaboration with pharmaceutical companies
also have promising results to improve the quality of life for children amp adults with Angelman Syndrome
Initially having to overcome language barriers cultural differences and different legal systems the parent
organisations created an international Alliance on Angelman Syndrome (ASA) to drive research forward
pooling resources and funds In the first two years over half a million eurorsquos (550000-) was raised with
more parent organisations worldwide continuing to join The parent organisations met this year in
Liverpool during the 50th anniversary of Angelman Syndrome At this conference representatives came
from England Ireland Belgium Netherlands Germany Austria France Italy Portugal Japan Israel
Hungary Poland Finland and Switzerland
As professor Ype Elgersma (NL) said ldquoThese are very exciting times because we might actually have the
possibility to reverse a severe genetic diseaserdquo Therefore the need to get things going is stronger than ever
within the Alliance and the need for more funding is evident Because in the end every parent wants their
child to be as happy and healthy as possible
Everything we do we do for our Angels wwwangelmanallianceor g
For information about the Alliance the research and other questions you can contact Betty Willemsen
bettywillemsenninafoundationeu
Dr Harry Angelman
1915 ndash 1996
El Dr Harry Angelman fue un meacutedico Ingleacutes quien
identificoacute lo que hoy en diacutea se llama Siacutendrome de
Angelman
Nacioacute en Birkenhead Inglaterra Le fascinaba el idioma
y la cultura de Italia
El fue el primero quien observoacute treacutes nintildeos no
relacionados quienes demostraban siacutentomas similares ndash
atrasos severos intelectuales un modo de andar que era
espasmoacutedico y riacutegido ausencia del hablar
convulsiones y una disposicioacuten contento
Luego duranted unas vacaciones en Italia descubrioacute
una pintura llamada ldquoUn Nintildeo con una Marionetardquo
creado por el artista del Renascimiento Giovanni
Francesco Caroto en el museo Castelvecchio en
Verona La pintura le hizo pensar en los nintildeos que eran
sus pacientes y le condujo a publicar un artiacuteculo
profesional en el antildeo 1965 que describiacutea lo que el
llamaba ldquoNintildeos Marionetasrdquo En aquel momento la
importancia de su artiacuteculo no fue reconocido como algo
importante
No pasoacute nada mas hasta Charles A Williams y Jaime L
Frias del departamento de Pediacuteatra Divisiacuteon de
Geneacutetica de la Universidad de Florida Colegio de
Medicina de Gainesville Florida sometieron un
artiacuteculo a la Revista Americana de Geneacutetica Meacutedica
explicando estudios de seacuteis pacientes comparando sus
datos con los de informes previos ndash incluyendo atrasos
intelectuales severos el andar como un ldquomarionetardquo
anormalidades cranio-faciales y espisodios frecuentes
de risas De repente se notoacute que eso era mucho maacutes
comuacuten de lo que anteriormente se creiacutea Ellos
propusieron ponerle el nombre de Siacutendrome de
Angelman en honor del Dr Harry Angelman
La Historia del Siacutendrome de Angelman (Spanish Translation)
Angelman Today
Gareth Edwards (Directeur de Star Wars) lrsquoaffirme la Force est avec lrsquoAngelman Syndrome Alliance (ASA)
On dit souvent que les parents feraient tout pour leurs enfants et crsquoest ce qui se veacuterifie agrave lrsquooccasion drsquoune maladie rare appeleacutee le syndrome drsquoAngelman Animeacutees drsquoun amour infini pour leurs enfants des organisations parentales de 15 pays ont formeacute une alliance dans le but de faire avancer la recherche qui permettra agrave ces enfants de parler courir et vivre leur vie pleinement Comme lrsquoaffirmait dans son intervention Gareth Edwards soutien de lrsquoassociation de bienfaisance anglaise qui accueillait cette anneacutee la confeacuterence internationale agrave Liverpool laquo Les Anges vont plus loin et au-delagrave raquo
De reacutecentes deacutecouvertes dues par le Professeur Art Beaudet (USA) avec le soutien des laboratoires pharmaceutiques ISIS vont conduire agrave des essais cliniques Drsquoautres chercheurs soutenus par des socieacuteteacutes pharmaceutiques ont obtenu des reacutesultats prometteurs pour ameacuteliorer la qualiteacute de vie des enfants et des adultes atteints du syndrome drsquoAngelman
Surmontant les obstacles dus aux langues aux diffeacuterences culturelles et leacutegales les organisations parentales ont creacuteeacute lrsquoAlliance du Syndrome drsquoAngelman (ASA) visant agrave faire progresser la recherche et agrave mettre en commun les ressources et les financements Dans les deux premiegraveres anneacutees 550 000 euro ont eacuteteacute reacuteunis et drsquoautres organisations venues du monde entier souhaitent srsquoy associer Cette anneacutee les organisations de parents se sont rencontreacutees agrave Liverpool dans le cadre du 50egraveme anniversaire de lrsquoidentification du syndrome Eacutetaient repreacutesenteacutes lrsquoAngleterre lrsquoIrlande la Belgique les Pays Bas lrsquoAllemagne lrsquoAutriche la France lrsquoItalie le Portugal le Japon Israeumll la Hongrie la Pologne la Finlande et la Suisse
Comme le disait le Professeur Ype Elgersma (NL) laquo Nous vivons des temps prometteurs car nous sommes en mesure drsquoinverser une grave maladie geacuteneacutetique raquo Crsquoest pourquoi il est de plus en plus neacutecessaire de renforcer notre action et de trouver drsquoautres financements Parce qursquoil est clair que chaque parent souhaite que son enfant vive heureux et en bonne santeacute
Tout ce que nous faisons nous le faisons pour nos Anges wwwangelmanallianceorg
Pour toute information sur lrsquoAlliance la recherche et drsquoautres questions vous pouvez contacter Betty Willemsen bettywillemsenninafoundationeu
Angelman Today
God only gives us what He is willing to walk us through
-Joell Gingrich Ketcham
ldquo ldquo
ldquo
Adding youtube video
platform to Angelman Today
Video content will include bull Interviews
bull Product Reviews
bull Latest Research
bull How To videos
bull Parent tips and interviews
bull Much more
Email Lizzieangelmantodaycom if you
would like to participate
Announcements
We are expanding Angelman Today to include a new
platform of video media
To do this we will be making some changes that will
include the publishing schedule for the online digital
magazine Starting in January 2016 we will start
publishing Angelman Today quarterly 4 information-
packed editions a year
Subscriptions of the online magazine will remain
FREE
Subscribing to the YouTube channel is also FREE
We welcome all Angelman foundations parents
care takers physicians and researchers to
contribute Deadlines are
bull December 10
bull March 10
bull June 10
bull September 10
Show your support for Angelman Today and subscribe
WWWANGELMANTODAYCOM November December 2015
Toby B Kroger in Kentucky Scotty at Wegmans in NY
There are many challenges that come along with being
a caretaker of an individual with special needs
including a task that for many may be simple a trip
that we all must do regularly which is shop for
groceries
The best inventions are usually created from a persons
desire to satisfy a need or to solve a problem they
encounter in their own life One set of parents did just
that Drew Ann and David Long have three children
Caroline is their middle child she was diagnosed with
Rett syndrome The challenge came when Drew Ann
went grocery shopping with her kids She had a
Making Shopping A Little
Easier This Holiday Season helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
toddler and Caroline in her wheelchair The problem
presented itself as in the form of a question ldquoHow
do you push a wheelchair and a shopping cartrdquo
Drew Ann had the answer She was able to vision the
cart and sat in her car and sketched it out on paper
She knew she was not the first to have this dilemma
nor would she be the last
Carolinersquos Carts can now be found at some select
retailers You can visit wwwcarolinescartcom to
find a location near you
Parents we need your help We at Angelman Today
are calling for action There are not enough stores
with Carolinersquos carts Parents it is up to us We are
the ones that need them so we have to be the ones to
request them at our local retailers Some stores like
Target Shoprite Publix Lucky and Wegmans are
starting to have them available If they are not
currently at a store near you just ask the manager
You will be helping not only your family but the
many other families that may not yet even know this
helpful cart exists
WWWANGELMANTODAYCOM November December 2015
Thank you A big thanks to all of the contributors that help bring you Angelman Today
Angelman Today Supporters
If I Need Help ndash wwwifineedhelporg
All of the Angelman and
Associated
Foundations
across the globe
Additional Contributors
Kat Adams
Maria Cano Moraleda
Erin Bates
Angelman Today is a lifestyle guide to achieving better health for individuals with Angelman Syndrome and their families It is written with your needs in mind but is not a substitute for consulting with your physician or other health care providers The publisher and authors are not responsible for any adverse effects or consequences resulting from the use of the suggestions products or procedures that appear on this website or online magazine All matters regarding your health should be supervised by a licensed health care physician Copyright 2014 Angelman Today LLC All rights reserved worldwide
CONTRIBUTORS
Marilyn Kennedy
Assistant Editor Marilynangelmantodaycom
Sybille Kraft Bellamy
Parent Expert in Nutrition
And LGIT diet FacebookcomAngelmanSyndromeDiet
STAY CONNECTED ON THE GO
DOWNLOAD THE NEW ISSUU APP TODAY ON GOOGLE PLAY
AND NOW IN THE APP STORE
Dr Harry Angelman
1915 ndash 1996
Dr Harry Angelman was an English physician
who identified what is now known as Angelman
Syndrome
He first observed three children who were not
related but showed similar symptoms of severe
intellectual delay stiff jerky gait lack of speech
seizures motor disorders and happy demeanors
Although Dr Angelman was born in Birkenhead
England he was an enthusiast for the language
and country of Italy And it was while vacationing
in Italy he observed an oil painting called A Boy
with a Puppet by the renaissance artist Giovanni
Francesco Caroto at the Castelvecchio museum in
Verona Reminded of the children hersquod observed
Dr Angelman published a paper in 1965 that
described what he called ldquopuppet childrenrdquo At
this time his paper was not immediately
recognized as important
It wasnrsquot until 1982 when Charles A Williams
and Jaime L Frias of the department of Pediatrics
Division of Genetics University of Florida
College of Medicine Gainesville submitted a
paper to the American Journal of Medical
Genetics reporting studies of six patients and
comparing their data to those from previous
reports - severe developmental delay ldquopuppet-
likerdquo gait craniofacial abnormalities and frequent
episodes of laughter- that it became clear the
syndrome was more common than previously
thought They proposed the name of this disorder
be changed to Angelman Syndrome
The History of Angelman Syndrome
Angelman Today
Books Recommended by Parents
Connect with us on
Thanks for your support
Please Share Angelman Today
wwwangelmantodaycom
WWWANGELMANTODAYCOM November December 2015
Angels in Action Celebrating the Abilities of our Angels
By Lyn Barnes
Daniel is 25years old lives in Dubbo NSW
Australia and has the best social life of anyone I
know (including me) He loves to go anywhere and
socialize with anyone He goes ten pin bowling to
the zoo the movies the local pub for lunch and
does Zumba twice a week
His smile is infectious and even though he suffers
daily from chronic pain that smile never leaves his
face making everyone who comes across him smile
as well
My angel Our angel half of Dubbos angel
Angelman Syndrome is something we all want to see cured But it has made me a better person It has taught me more about unconditional love than anything I ever learned in Sunday School or from any love song Were all on a journey to see our children made whole but maybe theyre making us whole in the processldquo
-Regie Hamm
Angelman Today
ldquo
ldquo
ldquoIf I Need Helprdquo and
ldquoAngelman Todayrdquo
care so much about
this community and
the safety of
individuals with
Angelman
Syndrome Now we
have partnered up to
offer you this great
promotion
WWWANGELMANTODAYCOM November December 2015
For 5 off your 1st purchase enter
promo code Angelman Today
See our video interview
WWWANGELMANTODAYCOM November December 2015
Libro Vivir con un Angel
Se trata de un libro escrito por 25 familias de la
Asociacioacuten contando sus propias experiencias
con un Angelman Un libro imprescindible para
comprender los que diariamente las familias
viven
Se trata de un libro escrito por 25
familias de la Asociacioacuten contando sus
propias experiencias con un Angelman
Un libro imprescindible para comprender
los que diariamente las familias viven
Hemos analizado los precios de envio al
extranjero y sale sobre 10euro cada libro El
que este interasado en que le enviemos
un libro al extranjero debera pagarlo con
tarjeta y a 20euro con gastos de envio
incluidos
Libro Vivir con un Angel para envios extranjero
httpwwwangelman-asaorg
Buy your copy
Compre su copia
From all of us at
WWWANGELMANTODAYCOM November December 2015
New Book ldquoLife with an Angel
ldquoWhat is Angelman Syndromerdquo That is usually
the first question we ask the doctor as soon as our
child is diagnosed with this rare disease And
then come the follow-up questions What can we
do Is there a treatment What is their life
expectancy
As soon as we become aware of the fact that
there is no treatment or cure our whole life is
turned upside down Each individual family deals
with the situation the best way they can Some
choose denial However sooner or later they will
try to contact other families in the same situation
who will be able to understand to share their
own experience and offer support in bad times
and celebrate with us the good times
All Angel families would have loved to hear
about the syndrome from a more positive and
closer point of view than that offered by doctors
And so 25 families belonging to the Spanish
Angelman Syndrome Association decided to
write down their personal stories in the hope of
spreading the word on Angelman Syndrome and
especially with the determination to help those
who in the future will come face to face with this
diagnosis
We want them to know that they are not alone
and that there is a life and hope beyond the
syndrome It may be difficult at times but it will
bring moments of total happiness more than we
could have imagined
And most importantly the book is a tribute to
our sons and daughters it is their lives and their
stories we are sharing with the world a story
they arenrsquot able to explain with words
wwwangelman-asaorg
Click here to buy the digital edition
(ebook 3 euros)
Click here to buy the paper edition
(20 euros shipping included)
Order online
The English version will be published soon
WWWANGELMANTODAYCOM November December 2015
The Angel Wings Foundation is bringing you an Angelman
Today Exclusive Vacation Giveaway
Last year the Angel Wings Foundation hit
upon a novel idea How about giving
someone a vacation Someone who could
really use it hellipsomeone who deserves it
hellipsomeone who might actually need it to re-
set their lives Well we did just that and it
worked out better than we couldrsquove ever
imagined
So this year wersquore doing it again One
deserving Angelman family will win an all
expense paid vacation to a music and wine
event in Napa California called ldquoLive In The
Vinyardrdquo
We realize that this isnrsquot scientific research
or new breakthrough therapy techniques or
an awareness campaign All of those things
are certainly vital and crucial to our
collective journey as Angelman parents We
cheer them on and support them
wholeheartedly But we at the Angel Wings
Foundation want to wrap our arms around
the Angelman community and give hugs
wherever and whenever we can We know
how fatiguing constant caregiving can be
We also know how isolating it can be for the
Angel to only see the same people day in and
day out So this ldquoAngel Week Offrdquo is just as
much for the Angels as it is for the parents
We will send in a male and female caregiver
to the familyrsquos home to give the Angel a
week off as well Activities will be planned
every day that donrsquot include mom and dad
After all everybody needs a break from
mom and dad sometimes Besides mom and
dad will be getting a massage or golfing or
horseback riding or drinking wine and
listening to music somewhere in Northern
California
So herersquos what you do hellipwrite an essay (500
words or less) describing your Angelman
journey We all have one and they are all
deserving of a great vacation But we can only
do one at a time right now hellipsorry An all-star
panel of judges will read the entries and
narrow them down to a top 5 The they will re-
read them and ONE family will win the
vacation
The panel consists of people from Make-A-
Wish Best Buddies Special Olympics
Angelman Today and one board member from
the Angel Wings Foundation I donrsquot read
them I just get to call you and tell you yoursquove
won hellipI love that part
All entries must be in by Thanksgiving Day
2015 A winner will be chosen and announced
on Christmas Eve hellipwhat a great Christmas
gift Then we will start making arrangements
for the vacation that will take place in April of
2016 A family member or designated care
giver (in charge) must be present with our
caregivers So keep that part in mind Safety
first
Last yearrsquos winners Mary and Rory were so
moved by the experience they have asked if
they can donate to this yearrsquos winner I think
that speaks for itself They sent in a video to
encourage everyone to enter
Hopefully one day wersquoll be able to do this
many times a year But for this year we canrsquot
wait to read the entries and award some
amazing Angel family a break and a time they
will never forget
We love you all Now get to writing
Email they essay entry to
AngelsWeekOffangelmantodaycom
WWWANGELMANTODAYCOM November December 2015
WWWANGELMANTODAYCOM November December 2015
WOULD YOU LIKE TO CONTRIBUTE
We welcome all Angelman foundations parents care takers physicians and researchers
Email articles and pictures to Lizzieangelmantodaycom
Holiday Gift Guide
Radiance Floor Lamp Night Light Star Projector
Chewbeads Military Dog Tags
Krazy Gears Sensory Weighted Blanket
Senseez Vibrating Pillow Crazy Aaronrsquos Thinking Putty
By Kat Adams Melissa is 12 years old and has Angelman
syndrome UPD She loves to play games and
laugh at her big Brother Jacobs jokes she has a
wicked sense of humor
Melissa won the Child of courage award at an
event in her home town I was very proud that
her fellow citizens chose to recognize her daily
struggles and her massive achievements in this
way
Melissa experiences life in such a way that
every day is an adventure she brings so much
love and happiness into both mine and Jacobs
lives
We have set up a small Foundation in Melissas
name to help support research into a cure for
Angelman syndrome and have had many good
times with our fundraising events taking part
in things such as skydiving and even carrying
Melissa in a sedan chair for 5 miles
Life is never dull with a child like Melissa
Lots of tears along the way but much more
laughter
Angels in Action
Last year was such a success we are doing it again Enter a picture of your loved one
with Angelman Syndrome Get your friends and family voting and they could be on
the January cover of Angelman Today Watch our Facebook page for details
2 16
2014 Cover
2015 Cover
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
The Meerdo Family
Kathryn Matt and Stetson from Chip at AS event
Brian and Drew Fitzgerald annual Blarney CupYaron Werber
Because of you AS families benefit
THANK YOU to our phenomenal supporters this past yearHoly Cow Our AS friends and families have truly impressed our socks off this year Your creativity and dedication is shattering past records and touching lives deeply We at the ASF are humbled and honored to have had independent fundraisers raise more than $100000 for the AS community to date
Check out what just a few of our families have done in 2015
Family Fun Day - Michael Drzewiecki and company
Berto and Minnie with their daughter Pam
Annual Tractor Cruise - Horton Kansas
Because of you AS families benefit
THANK YOU to every individual and organization that played a role in these fundraisers either by spearheading attending or donating to these events
Blarney Cup Paddle Tournament The Fitzgeraldrsquos in Ohio $25450
Meerdo Annual Golf Tournament The Meerdorsquos in Utah $19980
Chip Away at AS Golf Tournament The Elyrsquos in Georgia $11683
Tractor Cruise The Olsenrsquos in Kansas $5350
Cure for the Angels Family Day Angelique Tuthill in New York $4747
Discover Day Camp Christina Polleto in New York $4309
Yaron Werber of Ovid Therapeutics raised $3953 for ASF at the Brooklyn Rock n Roll 12 Marathon
Hauser Junior High School Fundraiser in Westchester New York $3535
Custom Harley Davidson Bike Show Noel Perez and Berto Castellanos in California $3360
Pardi Gras Promotion and Sales Proceeds $2500
Tierrarsquos Event $2435
Family Fun Day Michael Drzewiecki in New York $2338
The Hope Classic at Lower Merion High School in Medinah NY $2342
Run Like A Mother 5k Tiffany Cruikshank in Hinsdale Illinois $1880
Oakland Arsquos Fundraiser in California $1345
7th Street Sportsmen Club Fundraiser in Pennsylvania $1000
THANK YOU to all of the fundraisers who have brought in more than $100000 of donations in 2015 We are very excited at the possibilities and creativity our families will bring in 2016
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Summit4Angelman
Father to young boy with AS climbs Mt Kilimanjaro to raise awareness of ASFrom Kyle himself
Irsquom going to take 8 days to climb up the worldrsquos tallest freestanding mountain to raise awareness for Angelman syndrome and Irsquove realized during my training that I donrsquot think I can do it alone Of course Irsquom going up with a great group looking forward to helping the cause in any way they can but Irsquove found such strength in keeping focused on why Irsquom doing this and every time I ldquopicturerdquo my son Madden it keeps me going when I desperately want to quit or cut corners in training If I keep in mind how my son never quits and overcomes his challenges with a smile I realize this mountain isnrsquot quite as tall I as first thought The point ishellipwithout Madden this climb seems a lot more difficult Which got me thinking what if I have an army of Angels with me every step of the climb Irsquom asking you to send me a picture of your Angel so I can take them to the top of Kilimanjaro with me Each photo and story you send me will provide the strength I need to keep going when the air is thin the weather is cold and my head is pounding I will do everything in my power to get to the top with them My chances will be far better with each person I take up with me If I make it to the Summit I promise they will see the view with me at 19341 feet
Visit Kylersquos personal blog at wwwsummit4angelmancom to find out more about Kylersquos journey
How can you helpbull Share your personal Summit story of accomplishment
on Facebook and Twitter and include the hashtag Summit4Angelman
bull Introduce Angelman syndrome to new peoplehellipKylersquos goal is to raise awareness of AS and he wants to reach 19341mdashthatrsquos one new person for every foot that Mt Kilimanjaro is tall
bull Share a photo of your loved one with AS (send to kyrooneyoutlookcom) for Kyle to take to the top of Mt Kilimanjaro
Looks Whatrsquos Shouted From the Mountaintop Angelman Syndrome Awareness
ASF Communication Training Series
Having challenges with helping your loved one with AS better communicate We have the resource for you In collaboration with several AS communication experts the ASF has created a FREE communication resource that you can access AT ANY TIME the ASF Communication Training Series This Series takes all of the hours of great communication workshops and breaks them down into smaller digestible parts so that you and your individual with AS can reach herhis greatest communication success at any age Using web-based teaching the Series is designed to be sequential and you can join at any time and proceed through the training at your childrsquos pace of learning Click here for more and to access the schedule past webinar recordings and handouts
Meet the experts
ERIN SHELDON M EDErin earned her Masters of Education studying the learning characteristics of students with AS Erin works as an assistive technology consultant with a focus on supporting students with complex learning needs to access the general curriculum in inclusive classrooms She founded the Angelman Literacy
Project an initiative to support families and school teams to foster emergent literacy development in students with AS She presents professional development workshops and webinars across North America and Europe including at conferences such as Closing the Gap and ATIA and has authored manuals book chapters and journal articles
DR CAROLINE MUSSELWHITE CCC-SLPDr Musselwhite is an assistive technology specialist with more than 35 years of experience working with children and adolescents with significant disabilities in a variety of settings including Head Start developmental day programs homes and the public schools Dr
Musselwhite has written a number of textbooks and ldquohow-tordquo books on a range of topics and has also authored many books and software programs for youth with disabilities She has presented thousands of workshops throughout North and South America Australia Europe and Africa and is a founding member and Fellow of the International Society for Augmentative and Alternative Communication
MAUREEN NEVERS MS CCC-SLP LICENSED SPEECH-LANGUAGE PATHOLOGIST AUGMENTATIVE COMMUNICATION SPECIALISTMaureen earned a BS in Communication Disorders from the University of Massachusetts at Amherst in 1991 then earned a MS in Speech-Language
Pathology from the University of Vermont in 1993 Her graduate work included participation in a comprehensive training program in AAC She worked for Easter Seals in Massachusetts for eleven years before joining the Center on Disability and Community Inclusion at the University of Vermont eleven years ago She currently works as an Augmentative Communication Specialist with the Vermont I-Team where she is part of an interdisciplinary team that consults with school teams across the state to support individuals with complex communication needs
Communication training you can understand and use
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
MARY-LOUISE BERTRAMMary-Louise Bertram is a qualified Early Childhood Teacher from Perth Western Australia with special qualifications and training in the areas of communication sensory processing and literacy supports for children with complex disabilities Mary-Louise became involved with the AS community in 2007 while
teaching a class of six children four of whom had AS (all Del +) Since then Mary-Louise has worked with people with AS of all ages across Western Australia in the first statewide comprehensive AS-specific communication intervention of its kind She has supported families across the globe to advocate for their childrsquos right to high-quality communication and education intervention Mary-Louise currently works in private practice supporting individuals with complex disabilities (and their families) with communication and literacy
Families are also encouraged to support each other and share tips via the Seriesrsquo private ASF Communication Training Series Facebook group
Twenty years ago we never would have imagined that so many generous people like you would open their hearts to help those affected by AS Your generosity eases the financial and emotional burden on families by supporting our family resource program and has helped our researchers make significant breakthroughs in treatments and potential cures for AS Without you there would be no us We are forever grateful for your support
Click here to make a contribution to the ASFrsquos end-of-year appeal All donations are 100 tax deductible per IRS regulations
Itrsquos ALL because of YOU
WWWANGELMANTODAYCOM November December 2015
By Cass Gamero
My sons name is Alexander and he was
recently diagnosed in July 2015 Hes only
18 months old and is loved by all Anyone
who meets him cant help but be
memorized by his long eye lashes amp
beaming smile When you see him you
cant help but smile My son also has some
vision problems but is getting better He
loves his toy keys and could recognize his
bottle from anywhere Hes lovable
friendly joyful and bright
Angels in Action Celebrating the Abilities of our Angels
Gareth Edwards (Star Wars Director) acknowledges
The force is strong in the Angelman Alliance
It is often said that parents will do anything for their children A rare
disease called Angelman Syndrome is proving testimony to this fact
Driven by an unstoppable love for their children parent organisations
from 15 countries have formed an alliance to work together to progress
research that may help their children to speak run and live life to their
full potential As Gareth Edwards patron of the UK Charity that hosted
this yearsrsquo conference in Liverpool England said during his speech at
the conference ldquoAngels go further and beyondrdquo
With the support of ISIS pharmaceuticals recent findings by professor Art Beaudet (USA) are expected to
progress to clinical trials Results from other researchers in collaboration with pharmaceutical companies
also have promising results to improve the quality of life for children amp adults with Angelman Syndrome
Initially having to overcome language barriers cultural differences and different legal systems the parent
organisations created an international Alliance on Angelman Syndrome (ASA) to drive research forward
pooling resources and funds In the first two years over half a million eurorsquos (550000-) was raised with
more parent organisations worldwide continuing to join The parent organisations met this year in
Liverpool during the 50th anniversary of Angelman Syndrome At this conference representatives came
from England Ireland Belgium Netherlands Germany Austria France Italy Portugal Japan Israel
Hungary Poland Finland and Switzerland
As professor Ype Elgersma (NL) said ldquoThese are very exciting times because we might actually have the
possibility to reverse a severe genetic diseaserdquo Therefore the need to get things going is stronger than ever
within the Alliance and the need for more funding is evident Because in the end every parent wants their
child to be as happy and healthy as possible
Everything we do we do for our Angels wwwangelmanallianceor g
For information about the Alliance the research and other questions you can contact Betty Willemsen
bettywillemsenninafoundationeu
Dr Harry Angelman
1915 ndash 1996
El Dr Harry Angelman fue un meacutedico Ingleacutes quien
identificoacute lo que hoy en diacutea se llama Siacutendrome de
Angelman
Nacioacute en Birkenhead Inglaterra Le fascinaba el idioma
y la cultura de Italia
El fue el primero quien observoacute treacutes nintildeos no
relacionados quienes demostraban siacutentomas similares ndash
atrasos severos intelectuales un modo de andar que era
espasmoacutedico y riacutegido ausencia del hablar
convulsiones y una disposicioacuten contento
Luego duranted unas vacaciones en Italia descubrioacute
una pintura llamada ldquoUn Nintildeo con una Marionetardquo
creado por el artista del Renascimiento Giovanni
Francesco Caroto en el museo Castelvecchio en
Verona La pintura le hizo pensar en los nintildeos que eran
sus pacientes y le condujo a publicar un artiacuteculo
profesional en el antildeo 1965 que describiacutea lo que el
llamaba ldquoNintildeos Marionetasrdquo En aquel momento la
importancia de su artiacuteculo no fue reconocido como algo
importante
No pasoacute nada mas hasta Charles A Williams y Jaime L
Frias del departamento de Pediacuteatra Divisiacuteon de
Geneacutetica de la Universidad de Florida Colegio de
Medicina de Gainesville Florida sometieron un
artiacuteculo a la Revista Americana de Geneacutetica Meacutedica
explicando estudios de seacuteis pacientes comparando sus
datos con los de informes previos ndash incluyendo atrasos
intelectuales severos el andar como un ldquomarionetardquo
anormalidades cranio-faciales y espisodios frecuentes
de risas De repente se notoacute que eso era mucho maacutes
comuacuten de lo que anteriormente se creiacutea Ellos
propusieron ponerle el nombre de Siacutendrome de
Angelman en honor del Dr Harry Angelman
La Historia del Siacutendrome de Angelman (Spanish Translation)
Angelman Today
Gareth Edwards (Directeur de Star Wars) lrsquoaffirme la Force est avec lrsquoAngelman Syndrome Alliance (ASA)
On dit souvent que les parents feraient tout pour leurs enfants et crsquoest ce qui se veacuterifie agrave lrsquooccasion drsquoune maladie rare appeleacutee le syndrome drsquoAngelman Animeacutees drsquoun amour infini pour leurs enfants des organisations parentales de 15 pays ont formeacute une alliance dans le but de faire avancer la recherche qui permettra agrave ces enfants de parler courir et vivre leur vie pleinement Comme lrsquoaffirmait dans son intervention Gareth Edwards soutien de lrsquoassociation de bienfaisance anglaise qui accueillait cette anneacutee la confeacuterence internationale agrave Liverpool laquo Les Anges vont plus loin et au-delagrave raquo
De reacutecentes deacutecouvertes dues par le Professeur Art Beaudet (USA) avec le soutien des laboratoires pharmaceutiques ISIS vont conduire agrave des essais cliniques Drsquoautres chercheurs soutenus par des socieacuteteacutes pharmaceutiques ont obtenu des reacutesultats prometteurs pour ameacuteliorer la qualiteacute de vie des enfants et des adultes atteints du syndrome drsquoAngelman
Surmontant les obstacles dus aux langues aux diffeacuterences culturelles et leacutegales les organisations parentales ont creacuteeacute lrsquoAlliance du Syndrome drsquoAngelman (ASA) visant agrave faire progresser la recherche et agrave mettre en commun les ressources et les financements Dans les deux premiegraveres anneacutees 550 000 euro ont eacuteteacute reacuteunis et drsquoautres organisations venues du monde entier souhaitent srsquoy associer Cette anneacutee les organisations de parents se sont rencontreacutees agrave Liverpool dans le cadre du 50egraveme anniversaire de lrsquoidentification du syndrome Eacutetaient repreacutesenteacutes lrsquoAngleterre lrsquoIrlande la Belgique les Pays Bas lrsquoAllemagne lrsquoAutriche la France lrsquoItalie le Portugal le Japon Israeumll la Hongrie la Pologne la Finlande et la Suisse
Comme le disait le Professeur Ype Elgersma (NL) laquo Nous vivons des temps prometteurs car nous sommes en mesure drsquoinverser une grave maladie geacuteneacutetique raquo Crsquoest pourquoi il est de plus en plus neacutecessaire de renforcer notre action et de trouver drsquoautres financements Parce qursquoil est clair que chaque parent souhaite que son enfant vive heureux et en bonne santeacute
Tout ce que nous faisons nous le faisons pour nos Anges wwwangelmanallianceorg
Pour toute information sur lrsquoAlliance la recherche et drsquoautres questions vous pouvez contacter Betty Willemsen bettywillemsenninafoundationeu
Angelman Today
God only gives us what He is willing to walk us through
-Joell Gingrich Ketcham
ldquo ldquo
ldquo
Adding youtube video
platform to Angelman Today
Video content will include bull Interviews
bull Product Reviews
bull Latest Research
bull How To videos
bull Parent tips and interviews
bull Much more
Email Lizzieangelmantodaycom if you
would like to participate
Announcements
We are expanding Angelman Today to include a new
platform of video media
To do this we will be making some changes that will
include the publishing schedule for the online digital
magazine Starting in January 2016 we will start
publishing Angelman Today quarterly 4 information-
packed editions a year
Subscriptions of the online magazine will remain
FREE
Subscribing to the YouTube channel is also FREE
We welcome all Angelman foundations parents
care takers physicians and researchers to
contribute Deadlines are
bull December 10
bull March 10
bull June 10
bull September 10
Show your support for Angelman Today and subscribe
WWWANGELMANTODAYCOM November December 2015
Toby B Kroger in Kentucky Scotty at Wegmans in NY
There are many challenges that come along with being
a caretaker of an individual with special needs
including a task that for many may be simple a trip
that we all must do regularly which is shop for
groceries
The best inventions are usually created from a persons
desire to satisfy a need or to solve a problem they
encounter in their own life One set of parents did just
that Drew Ann and David Long have three children
Caroline is their middle child she was diagnosed with
Rett syndrome The challenge came when Drew Ann
went grocery shopping with her kids She had a
Making Shopping A Little
Easier This Holiday Season helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
toddler and Caroline in her wheelchair The problem
presented itself as in the form of a question ldquoHow
do you push a wheelchair and a shopping cartrdquo
Drew Ann had the answer She was able to vision the
cart and sat in her car and sketched it out on paper
She knew she was not the first to have this dilemma
nor would she be the last
Carolinersquos Carts can now be found at some select
retailers You can visit wwwcarolinescartcom to
find a location near you
Parents we need your help We at Angelman Today
are calling for action There are not enough stores
with Carolinersquos carts Parents it is up to us We are
the ones that need them so we have to be the ones to
request them at our local retailers Some stores like
Target Shoprite Publix Lucky and Wegmans are
starting to have them available If they are not
currently at a store near you just ask the manager
You will be helping not only your family but the
many other families that may not yet even know this
helpful cart exists
WWWANGELMANTODAYCOM November December 2015
Thank you A big thanks to all of the contributors that help bring you Angelman Today
Angelman Today Supporters
If I Need Help ndash wwwifineedhelporg
All of the Angelman and
Associated
Foundations
across the globe
Additional Contributors
Kat Adams
Maria Cano Moraleda
Erin Bates
Angelman Today is a lifestyle guide to achieving better health for individuals with Angelman Syndrome and their families It is written with your needs in mind but is not a substitute for consulting with your physician or other health care providers The publisher and authors are not responsible for any adverse effects or consequences resulting from the use of the suggestions products or procedures that appear on this website or online magazine All matters regarding your health should be supervised by a licensed health care physician Copyright 2014 Angelman Today LLC All rights reserved worldwide
CONTRIBUTORS
Marilyn Kennedy
Assistant Editor Marilynangelmantodaycom
Sybille Kraft Bellamy
Parent Expert in Nutrition
And LGIT diet FacebookcomAngelmanSyndromeDiet
STAY CONNECTED ON THE GO
DOWNLOAD THE NEW ISSUU APP TODAY ON GOOGLE PLAY
AND NOW IN THE APP STORE
Dr Harry Angelman
1915 ndash 1996
Dr Harry Angelman was an English physician
who identified what is now known as Angelman
Syndrome
He first observed three children who were not
related but showed similar symptoms of severe
intellectual delay stiff jerky gait lack of speech
seizures motor disorders and happy demeanors
Although Dr Angelman was born in Birkenhead
England he was an enthusiast for the language
and country of Italy And it was while vacationing
in Italy he observed an oil painting called A Boy
with a Puppet by the renaissance artist Giovanni
Francesco Caroto at the Castelvecchio museum in
Verona Reminded of the children hersquod observed
Dr Angelman published a paper in 1965 that
described what he called ldquopuppet childrenrdquo At
this time his paper was not immediately
recognized as important
It wasnrsquot until 1982 when Charles A Williams
and Jaime L Frias of the department of Pediatrics
Division of Genetics University of Florida
College of Medicine Gainesville submitted a
paper to the American Journal of Medical
Genetics reporting studies of six patients and
comparing their data to those from previous
reports - severe developmental delay ldquopuppet-
likerdquo gait craniofacial abnormalities and frequent
episodes of laughter- that it became clear the
syndrome was more common than previously
thought They proposed the name of this disorder
be changed to Angelman Syndrome
The History of Angelman Syndrome
Angelman Today
Books Recommended by Parents
Connect with us on
Thanks for your support
Please Share Angelman Today
wwwangelmantodaycom
Angelman Syndrome is something we all want to see cured But it has made me a better person It has taught me more about unconditional love than anything I ever learned in Sunday School or from any love song Were all on a journey to see our children made whole but maybe theyre making us whole in the processldquo
-Regie Hamm
Angelman Today
ldquo
ldquo
ldquoIf I Need Helprdquo and
ldquoAngelman Todayrdquo
care so much about
this community and
the safety of
individuals with
Angelman
Syndrome Now we
have partnered up to
offer you this great
promotion
WWWANGELMANTODAYCOM November December 2015
For 5 off your 1st purchase enter
promo code Angelman Today
See our video interview
WWWANGELMANTODAYCOM November December 2015
Libro Vivir con un Angel
Se trata de un libro escrito por 25 familias de la
Asociacioacuten contando sus propias experiencias
con un Angelman Un libro imprescindible para
comprender los que diariamente las familias
viven
Se trata de un libro escrito por 25
familias de la Asociacioacuten contando sus
propias experiencias con un Angelman
Un libro imprescindible para comprender
los que diariamente las familias viven
Hemos analizado los precios de envio al
extranjero y sale sobre 10euro cada libro El
que este interasado en que le enviemos
un libro al extranjero debera pagarlo con
tarjeta y a 20euro con gastos de envio
incluidos
Libro Vivir con un Angel para envios extranjero
httpwwwangelman-asaorg
Buy your copy
Compre su copia
From all of us at
WWWANGELMANTODAYCOM November December 2015
New Book ldquoLife with an Angel
ldquoWhat is Angelman Syndromerdquo That is usually
the first question we ask the doctor as soon as our
child is diagnosed with this rare disease And
then come the follow-up questions What can we
do Is there a treatment What is their life
expectancy
As soon as we become aware of the fact that
there is no treatment or cure our whole life is
turned upside down Each individual family deals
with the situation the best way they can Some
choose denial However sooner or later they will
try to contact other families in the same situation
who will be able to understand to share their
own experience and offer support in bad times
and celebrate with us the good times
All Angel families would have loved to hear
about the syndrome from a more positive and
closer point of view than that offered by doctors
And so 25 families belonging to the Spanish
Angelman Syndrome Association decided to
write down their personal stories in the hope of
spreading the word on Angelman Syndrome and
especially with the determination to help those
who in the future will come face to face with this
diagnosis
We want them to know that they are not alone
and that there is a life and hope beyond the
syndrome It may be difficult at times but it will
bring moments of total happiness more than we
could have imagined
And most importantly the book is a tribute to
our sons and daughters it is their lives and their
stories we are sharing with the world a story
they arenrsquot able to explain with words
wwwangelman-asaorg
Click here to buy the digital edition
(ebook 3 euros)
Click here to buy the paper edition
(20 euros shipping included)
Order online
The English version will be published soon
WWWANGELMANTODAYCOM November December 2015
The Angel Wings Foundation is bringing you an Angelman
Today Exclusive Vacation Giveaway
Last year the Angel Wings Foundation hit
upon a novel idea How about giving
someone a vacation Someone who could
really use it hellipsomeone who deserves it
hellipsomeone who might actually need it to re-
set their lives Well we did just that and it
worked out better than we couldrsquove ever
imagined
So this year wersquore doing it again One
deserving Angelman family will win an all
expense paid vacation to a music and wine
event in Napa California called ldquoLive In The
Vinyardrdquo
We realize that this isnrsquot scientific research
or new breakthrough therapy techniques or
an awareness campaign All of those things
are certainly vital and crucial to our
collective journey as Angelman parents We
cheer them on and support them
wholeheartedly But we at the Angel Wings
Foundation want to wrap our arms around
the Angelman community and give hugs
wherever and whenever we can We know
how fatiguing constant caregiving can be
We also know how isolating it can be for the
Angel to only see the same people day in and
day out So this ldquoAngel Week Offrdquo is just as
much for the Angels as it is for the parents
We will send in a male and female caregiver
to the familyrsquos home to give the Angel a
week off as well Activities will be planned
every day that donrsquot include mom and dad
After all everybody needs a break from
mom and dad sometimes Besides mom and
dad will be getting a massage or golfing or
horseback riding or drinking wine and
listening to music somewhere in Northern
California
So herersquos what you do hellipwrite an essay (500
words or less) describing your Angelman
journey We all have one and they are all
deserving of a great vacation But we can only
do one at a time right now hellipsorry An all-star
panel of judges will read the entries and
narrow them down to a top 5 The they will re-
read them and ONE family will win the
vacation
The panel consists of people from Make-A-
Wish Best Buddies Special Olympics
Angelman Today and one board member from
the Angel Wings Foundation I donrsquot read
them I just get to call you and tell you yoursquove
won hellipI love that part
All entries must be in by Thanksgiving Day
2015 A winner will be chosen and announced
on Christmas Eve hellipwhat a great Christmas
gift Then we will start making arrangements
for the vacation that will take place in April of
2016 A family member or designated care
giver (in charge) must be present with our
caregivers So keep that part in mind Safety
first
Last yearrsquos winners Mary and Rory were so
moved by the experience they have asked if
they can donate to this yearrsquos winner I think
that speaks for itself They sent in a video to
encourage everyone to enter
Hopefully one day wersquoll be able to do this
many times a year But for this year we canrsquot
wait to read the entries and award some
amazing Angel family a break and a time they
will never forget
We love you all Now get to writing
Email they essay entry to
AngelsWeekOffangelmantodaycom
WWWANGELMANTODAYCOM November December 2015
WWWANGELMANTODAYCOM November December 2015
WOULD YOU LIKE TO CONTRIBUTE
We welcome all Angelman foundations parents care takers physicians and researchers
Email articles and pictures to Lizzieangelmantodaycom
Holiday Gift Guide
Radiance Floor Lamp Night Light Star Projector
Chewbeads Military Dog Tags
Krazy Gears Sensory Weighted Blanket
Senseez Vibrating Pillow Crazy Aaronrsquos Thinking Putty
By Kat Adams Melissa is 12 years old and has Angelman
syndrome UPD She loves to play games and
laugh at her big Brother Jacobs jokes she has a
wicked sense of humor
Melissa won the Child of courage award at an
event in her home town I was very proud that
her fellow citizens chose to recognize her daily
struggles and her massive achievements in this
way
Melissa experiences life in such a way that
every day is an adventure she brings so much
love and happiness into both mine and Jacobs
lives
We have set up a small Foundation in Melissas
name to help support research into a cure for
Angelman syndrome and have had many good
times with our fundraising events taking part
in things such as skydiving and even carrying
Melissa in a sedan chair for 5 miles
Life is never dull with a child like Melissa
Lots of tears along the way but much more
laughter
Angels in Action
Last year was such a success we are doing it again Enter a picture of your loved one
with Angelman Syndrome Get your friends and family voting and they could be on
the January cover of Angelman Today Watch our Facebook page for details
2 16
2014 Cover
2015 Cover
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
The Meerdo Family
Kathryn Matt and Stetson from Chip at AS event
Brian and Drew Fitzgerald annual Blarney CupYaron Werber
Because of you AS families benefit
THANK YOU to our phenomenal supporters this past yearHoly Cow Our AS friends and families have truly impressed our socks off this year Your creativity and dedication is shattering past records and touching lives deeply We at the ASF are humbled and honored to have had independent fundraisers raise more than $100000 for the AS community to date
Check out what just a few of our families have done in 2015
Family Fun Day - Michael Drzewiecki and company
Berto and Minnie with their daughter Pam
Annual Tractor Cruise - Horton Kansas
Because of you AS families benefit
THANK YOU to every individual and organization that played a role in these fundraisers either by spearheading attending or donating to these events
Blarney Cup Paddle Tournament The Fitzgeraldrsquos in Ohio $25450
Meerdo Annual Golf Tournament The Meerdorsquos in Utah $19980
Chip Away at AS Golf Tournament The Elyrsquos in Georgia $11683
Tractor Cruise The Olsenrsquos in Kansas $5350
Cure for the Angels Family Day Angelique Tuthill in New York $4747
Discover Day Camp Christina Polleto in New York $4309
Yaron Werber of Ovid Therapeutics raised $3953 for ASF at the Brooklyn Rock n Roll 12 Marathon
Hauser Junior High School Fundraiser in Westchester New York $3535
Custom Harley Davidson Bike Show Noel Perez and Berto Castellanos in California $3360
Pardi Gras Promotion and Sales Proceeds $2500
Tierrarsquos Event $2435
Family Fun Day Michael Drzewiecki in New York $2338
The Hope Classic at Lower Merion High School in Medinah NY $2342
Run Like A Mother 5k Tiffany Cruikshank in Hinsdale Illinois $1880
Oakland Arsquos Fundraiser in California $1345
7th Street Sportsmen Club Fundraiser in Pennsylvania $1000
THANK YOU to all of the fundraisers who have brought in more than $100000 of donations in 2015 We are very excited at the possibilities and creativity our families will bring in 2016
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Summit4Angelman
Father to young boy with AS climbs Mt Kilimanjaro to raise awareness of ASFrom Kyle himself
Irsquom going to take 8 days to climb up the worldrsquos tallest freestanding mountain to raise awareness for Angelman syndrome and Irsquove realized during my training that I donrsquot think I can do it alone Of course Irsquom going up with a great group looking forward to helping the cause in any way they can but Irsquove found such strength in keeping focused on why Irsquom doing this and every time I ldquopicturerdquo my son Madden it keeps me going when I desperately want to quit or cut corners in training If I keep in mind how my son never quits and overcomes his challenges with a smile I realize this mountain isnrsquot quite as tall I as first thought The point ishellipwithout Madden this climb seems a lot more difficult Which got me thinking what if I have an army of Angels with me every step of the climb Irsquom asking you to send me a picture of your Angel so I can take them to the top of Kilimanjaro with me Each photo and story you send me will provide the strength I need to keep going when the air is thin the weather is cold and my head is pounding I will do everything in my power to get to the top with them My chances will be far better with each person I take up with me If I make it to the Summit I promise they will see the view with me at 19341 feet
Visit Kylersquos personal blog at wwwsummit4angelmancom to find out more about Kylersquos journey
How can you helpbull Share your personal Summit story of accomplishment
on Facebook and Twitter and include the hashtag Summit4Angelman
bull Introduce Angelman syndrome to new peoplehellipKylersquos goal is to raise awareness of AS and he wants to reach 19341mdashthatrsquos one new person for every foot that Mt Kilimanjaro is tall
bull Share a photo of your loved one with AS (send to kyrooneyoutlookcom) for Kyle to take to the top of Mt Kilimanjaro
Looks Whatrsquos Shouted From the Mountaintop Angelman Syndrome Awareness
ASF Communication Training Series
Having challenges with helping your loved one with AS better communicate We have the resource for you In collaboration with several AS communication experts the ASF has created a FREE communication resource that you can access AT ANY TIME the ASF Communication Training Series This Series takes all of the hours of great communication workshops and breaks them down into smaller digestible parts so that you and your individual with AS can reach herhis greatest communication success at any age Using web-based teaching the Series is designed to be sequential and you can join at any time and proceed through the training at your childrsquos pace of learning Click here for more and to access the schedule past webinar recordings and handouts
Meet the experts
ERIN SHELDON M EDErin earned her Masters of Education studying the learning characteristics of students with AS Erin works as an assistive technology consultant with a focus on supporting students with complex learning needs to access the general curriculum in inclusive classrooms She founded the Angelman Literacy
Project an initiative to support families and school teams to foster emergent literacy development in students with AS She presents professional development workshops and webinars across North America and Europe including at conferences such as Closing the Gap and ATIA and has authored manuals book chapters and journal articles
DR CAROLINE MUSSELWHITE CCC-SLPDr Musselwhite is an assistive technology specialist with more than 35 years of experience working with children and adolescents with significant disabilities in a variety of settings including Head Start developmental day programs homes and the public schools Dr
Musselwhite has written a number of textbooks and ldquohow-tordquo books on a range of topics and has also authored many books and software programs for youth with disabilities She has presented thousands of workshops throughout North and South America Australia Europe and Africa and is a founding member and Fellow of the International Society for Augmentative and Alternative Communication
MAUREEN NEVERS MS CCC-SLP LICENSED SPEECH-LANGUAGE PATHOLOGIST AUGMENTATIVE COMMUNICATION SPECIALISTMaureen earned a BS in Communication Disorders from the University of Massachusetts at Amherst in 1991 then earned a MS in Speech-Language
Pathology from the University of Vermont in 1993 Her graduate work included participation in a comprehensive training program in AAC She worked for Easter Seals in Massachusetts for eleven years before joining the Center on Disability and Community Inclusion at the University of Vermont eleven years ago She currently works as an Augmentative Communication Specialist with the Vermont I-Team where she is part of an interdisciplinary team that consults with school teams across the state to support individuals with complex communication needs
Communication training you can understand and use
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
MARY-LOUISE BERTRAMMary-Louise Bertram is a qualified Early Childhood Teacher from Perth Western Australia with special qualifications and training in the areas of communication sensory processing and literacy supports for children with complex disabilities Mary-Louise became involved with the AS community in 2007 while
teaching a class of six children four of whom had AS (all Del +) Since then Mary-Louise has worked with people with AS of all ages across Western Australia in the first statewide comprehensive AS-specific communication intervention of its kind She has supported families across the globe to advocate for their childrsquos right to high-quality communication and education intervention Mary-Louise currently works in private practice supporting individuals with complex disabilities (and their families) with communication and literacy
Families are also encouraged to support each other and share tips via the Seriesrsquo private ASF Communication Training Series Facebook group
Twenty years ago we never would have imagined that so many generous people like you would open their hearts to help those affected by AS Your generosity eases the financial and emotional burden on families by supporting our family resource program and has helped our researchers make significant breakthroughs in treatments and potential cures for AS Without you there would be no us We are forever grateful for your support
Click here to make a contribution to the ASFrsquos end-of-year appeal All donations are 100 tax deductible per IRS regulations
Itrsquos ALL because of YOU
WWWANGELMANTODAYCOM November December 2015
By Cass Gamero
My sons name is Alexander and he was
recently diagnosed in July 2015 Hes only
18 months old and is loved by all Anyone
who meets him cant help but be
memorized by his long eye lashes amp
beaming smile When you see him you
cant help but smile My son also has some
vision problems but is getting better He
loves his toy keys and could recognize his
bottle from anywhere Hes lovable
friendly joyful and bright
Angels in Action Celebrating the Abilities of our Angels
Gareth Edwards (Star Wars Director) acknowledges
The force is strong in the Angelman Alliance
It is often said that parents will do anything for their children A rare
disease called Angelman Syndrome is proving testimony to this fact
Driven by an unstoppable love for their children parent organisations
from 15 countries have formed an alliance to work together to progress
research that may help their children to speak run and live life to their
full potential As Gareth Edwards patron of the UK Charity that hosted
this yearsrsquo conference in Liverpool England said during his speech at
the conference ldquoAngels go further and beyondrdquo
With the support of ISIS pharmaceuticals recent findings by professor Art Beaudet (USA) are expected to
progress to clinical trials Results from other researchers in collaboration with pharmaceutical companies
also have promising results to improve the quality of life for children amp adults with Angelman Syndrome
Initially having to overcome language barriers cultural differences and different legal systems the parent
organisations created an international Alliance on Angelman Syndrome (ASA) to drive research forward
pooling resources and funds In the first two years over half a million eurorsquos (550000-) was raised with
more parent organisations worldwide continuing to join The parent organisations met this year in
Liverpool during the 50th anniversary of Angelman Syndrome At this conference representatives came
from England Ireland Belgium Netherlands Germany Austria France Italy Portugal Japan Israel
Hungary Poland Finland and Switzerland
As professor Ype Elgersma (NL) said ldquoThese are very exciting times because we might actually have the
possibility to reverse a severe genetic diseaserdquo Therefore the need to get things going is stronger than ever
within the Alliance and the need for more funding is evident Because in the end every parent wants their
child to be as happy and healthy as possible
Everything we do we do for our Angels wwwangelmanallianceor g
For information about the Alliance the research and other questions you can contact Betty Willemsen
bettywillemsenninafoundationeu
Dr Harry Angelman
1915 ndash 1996
El Dr Harry Angelman fue un meacutedico Ingleacutes quien
identificoacute lo que hoy en diacutea se llama Siacutendrome de
Angelman
Nacioacute en Birkenhead Inglaterra Le fascinaba el idioma
y la cultura de Italia
El fue el primero quien observoacute treacutes nintildeos no
relacionados quienes demostraban siacutentomas similares ndash
atrasos severos intelectuales un modo de andar que era
espasmoacutedico y riacutegido ausencia del hablar
convulsiones y una disposicioacuten contento
Luego duranted unas vacaciones en Italia descubrioacute
una pintura llamada ldquoUn Nintildeo con una Marionetardquo
creado por el artista del Renascimiento Giovanni
Francesco Caroto en el museo Castelvecchio en
Verona La pintura le hizo pensar en los nintildeos que eran
sus pacientes y le condujo a publicar un artiacuteculo
profesional en el antildeo 1965 que describiacutea lo que el
llamaba ldquoNintildeos Marionetasrdquo En aquel momento la
importancia de su artiacuteculo no fue reconocido como algo
importante
No pasoacute nada mas hasta Charles A Williams y Jaime L
Frias del departamento de Pediacuteatra Divisiacuteon de
Geneacutetica de la Universidad de Florida Colegio de
Medicina de Gainesville Florida sometieron un
artiacuteculo a la Revista Americana de Geneacutetica Meacutedica
explicando estudios de seacuteis pacientes comparando sus
datos con los de informes previos ndash incluyendo atrasos
intelectuales severos el andar como un ldquomarionetardquo
anormalidades cranio-faciales y espisodios frecuentes
de risas De repente se notoacute que eso era mucho maacutes
comuacuten de lo que anteriormente se creiacutea Ellos
propusieron ponerle el nombre de Siacutendrome de
Angelman en honor del Dr Harry Angelman
La Historia del Siacutendrome de Angelman (Spanish Translation)
Angelman Today
Gareth Edwards (Directeur de Star Wars) lrsquoaffirme la Force est avec lrsquoAngelman Syndrome Alliance (ASA)
On dit souvent que les parents feraient tout pour leurs enfants et crsquoest ce qui se veacuterifie agrave lrsquooccasion drsquoune maladie rare appeleacutee le syndrome drsquoAngelman Animeacutees drsquoun amour infini pour leurs enfants des organisations parentales de 15 pays ont formeacute une alliance dans le but de faire avancer la recherche qui permettra agrave ces enfants de parler courir et vivre leur vie pleinement Comme lrsquoaffirmait dans son intervention Gareth Edwards soutien de lrsquoassociation de bienfaisance anglaise qui accueillait cette anneacutee la confeacuterence internationale agrave Liverpool laquo Les Anges vont plus loin et au-delagrave raquo
De reacutecentes deacutecouvertes dues par le Professeur Art Beaudet (USA) avec le soutien des laboratoires pharmaceutiques ISIS vont conduire agrave des essais cliniques Drsquoautres chercheurs soutenus par des socieacuteteacutes pharmaceutiques ont obtenu des reacutesultats prometteurs pour ameacuteliorer la qualiteacute de vie des enfants et des adultes atteints du syndrome drsquoAngelman
Surmontant les obstacles dus aux langues aux diffeacuterences culturelles et leacutegales les organisations parentales ont creacuteeacute lrsquoAlliance du Syndrome drsquoAngelman (ASA) visant agrave faire progresser la recherche et agrave mettre en commun les ressources et les financements Dans les deux premiegraveres anneacutees 550 000 euro ont eacuteteacute reacuteunis et drsquoautres organisations venues du monde entier souhaitent srsquoy associer Cette anneacutee les organisations de parents se sont rencontreacutees agrave Liverpool dans le cadre du 50egraveme anniversaire de lrsquoidentification du syndrome Eacutetaient repreacutesenteacutes lrsquoAngleterre lrsquoIrlande la Belgique les Pays Bas lrsquoAllemagne lrsquoAutriche la France lrsquoItalie le Portugal le Japon Israeumll la Hongrie la Pologne la Finlande et la Suisse
Comme le disait le Professeur Ype Elgersma (NL) laquo Nous vivons des temps prometteurs car nous sommes en mesure drsquoinverser une grave maladie geacuteneacutetique raquo Crsquoest pourquoi il est de plus en plus neacutecessaire de renforcer notre action et de trouver drsquoautres financements Parce qursquoil est clair que chaque parent souhaite que son enfant vive heureux et en bonne santeacute
Tout ce que nous faisons nous le faisons pour nos Anges wwwangelmanallianceorg
Pour toute information sur lrsquoAlliance la recherche et drsquoautres questions vous pouvez contacter Betty Willemsen bettywillemsenninafoundationeu
Angelman Today
God only gives us what He is willing to walk us through
-Joell Gingrich Ketcham
ldquo ldquo
ldquo
Adding youtube video
platform to Angelman Today
Video content will include bull Interviews
bull Product Reviews
bull Latest Research
bull How To videos
bull Parent tips and interviews
bull Much more
Email Lizzieangelmantodaycom if you
would like to participate
Announcements
We are expanding Angelman Today to include a new
platform of video media
To do this we will be making some changes that will
include the publishing schedule for the online digital
magazine Starting in January 2016 we will start
publishing Angelman Today quarterly 4 information-
packed editions a year
Subscriptions of the online magazine will remain
FREE
Subscribing to the YouTube channel is also FREE
We welcome all Angelman foundations parents
care takers physicians and researchers to
contribute Deadlines are
bull December 10
bull March 10
bull June 10
bull September 10
Show your support for Angelman Today and subscribe
WWWANGELMANTODAYCOM November December 2015
Toby B Kroger in Kentucky Scotty at Wegmans in NY
There are many challenges that come along with being
a caretaker of an individual with special needs
including a task that for many may be simple a trip
that we all must do regularly which is shop for
groceries
The best inventions are usually created from a persons
desire to satisfy a need or to solve a problem they
encounter in their own life One set of parents did just
that Drew Ann and David Long have three children
Caroline is their middle child she was diagnosed with
Rett syndrome The challenge came when Drew Ann
went grocery shopping with her kids She had a
Making Shopping A Little
Easier This Holiday Season helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
toddler and Caroline in her wheelchair The problem
presented itself as in the form of a question ldquoHow
do you push a wheelchair and a shopping cartrdquo
Drew Ann had the answer She was able to vision the
cart and sat in her car and sketched it out on paper
She knew she was not the first to have this dilemma
nor would she be the last
Carolinersquos Carts can now be found at some select
retailers You can visit wwwcarolinescartcom to
find a location near you
Parents we need your help We at Angelman Today
are calling for action There are not enough stores
with Carolinersquos carts Parents it is up to us We are
the ones that need them so we have to be the ones to
request them at our local retailers Some stores like
Target Shoprite Publix Lucky and Wegmans are
starting to have them available If they are not
currently at a store near you just ask the manager
You will be helping not only your family but the
many other families that may not yet even know this
helpful cart exists
WWWANGELMANTODAYCOM November December 2015
Thank you A big thanks to all of the contributors that help bring you Angelman Today
Angelman Today Supporters
If I Need Help ndash wwwifineedhelporg
All of the Angelman and
Associated
Foundations
across the globe
Additional Contributors
Kat Adams
Maria Cano Moraleda
Erin Bates
Angelman Today is a lifestyle guide to achieving better health for individuals with Angelman Syndrome and their families It is written with your needs in mind but is not a substitute for consulting with your physician or other health care providers The publisher and authors are not responsible for any adverse effects or consequences resulting from the use of the suggestions products or procedures that appear on this website or online magazine All matters regarding your health should be supervised by a licensed health care physician Copyright 2014 Angelman Today LLC All rights reserved worldwide
CONTRIBUTORS
Marilyn Kennedy
Assistant Editor Marilynangelmantodaycom
Sybille Kraft Bellamy
Parent Expert in Nutrition
And LGIT diet FacebookcomAngelmanSyndromeDiet
STAY CONNECTED ON THE GO
DOWNLOAD THE NEW ISSUU APP TODAY ON GOOGLE PLAY
AND NOW IN THE APP STORE
Dr Harry Angelman
1915 ndash 1996
Dr Harry Angelman was an English physician
who identified what is now known as Angelman
Syndrome
He first observed three children who were not
related but showed similar symptoms of severe
intellectual delay stiff jerky gait lack of speech
seizures motor disorders and happy demeanors
Although Dr Angelman was born in Birkenhead
England he was an enthusiast for the language
and country of Italy And it was while vacationing
in Italy he observed an oil painting called A Boy
with a Puppet by the renaissance artist Giovanni
Francesco Caroto at the Castelvecchio museum in
Verona Reminded of the children hersquod observed
Dr Angelman published a paper in 1965 that
described what he called ldquopuppet childrenrdquo At
this time his paper was not immediately
recognized as important
It wasnrsquot until 1982 when Charles A Williams
and Jaime L Frias of the department of Pediatrics
Division of Genetics University of Florida
College of Medicine Gainesville submitted a
paper to the American Journal of Medical
Genetics reporting studies of six patients and
comparing their data to those from previous
reports - severe developmental delay ldquopuppet-
likerdquo gait craniofacial abnormalities and frequent
episodes of laughter- that it became clear the
syndrome was more common than previously
thought They proposed the name of this disorder
be changed to Angelman Syndrome
The History of Angelman Syndrome
Angelman Today
Books Recommended by Parents
Connect with us on
Thanks for your support
Please Share Angelman Today
wwwangelmantodaycom
ldquoIf I Need Helprdquo and
ldquoAngelman Todayrdquo
care so much about
this community and
the safety of
individuals with
Angelman
Syndrome Now we
have partnered up to
offer you this great
promotion
WWWANGELMANTODAYCOM November December 2015
For 5 off your 1st purchase enter
promo code Angelman Today
See our video interview
WWWANGELMANTODAYCOM November December 2015
Libro Vivir con un Angel
Se trata de un libro escrito por 25 familias de la
Asociacioacuten contando sus propias experiencias
con un Angelman Un libro imprescindible para
comprender los que diariamente las familias
viven
Se trata de un libro escrito por 25
familias de la Asociacioacuten contando sus
propias experiencias con un Angelman
Un libro imprescindible para comprender
los que diariamente las familias viven
Hemos analizado los precios de envio al
extranjero y sale sobre 10euro cada libro El
que este interasado en que le enviemos
un libro al extranjero debera pagarlo con
tarjeta y a 20euro con gastos de envio
incluidos
Libro Vivir con un Angel para envios extranjero
httpwwwangelman-asaorg
Buy your copy
Compre su copia
From all of us at
WWWANGELMANTODAYCOM November December 2015
New Book ldquoLife with an Angel
ldquoWhat is Angelman Syndromerdquo That is usually
the first question we ask the doctor as soon as our
child is diagnosed with this rare disease And
then come the follow-up questions What can we
do Is there a treatment What is their life
expectancy
As soon as we become aware of the fact that
there is no treatment or cure our whole life is
turned upside down Each individual family deals
with the situation the best way they can Some
choose denial However sooner or later they will
try to contact other families in the same situation
who will be able to understand to share their
own experience and offer support in bad times
and celebrate with us the good times
All Angel families would have loved to hear
about the syndrome from a more positive and
closer point of view than that offered by doctors
And so 25 families belonging to the Spanish
Angelman Syndrome Association decided to
write down their personal stories in the hope of
spreading the word on Angelman Syndrome and
especially with the determination to help those
who in the future will come face to face with this
diagnosis
We want them to know that they are not alone
and that there is a life and hope beyond the
syndrome It may be difficult at times but it will
bring moments of total happiness more than we
could have imagined
And most importantly the book is a tribute to
our sons and daughters it is their lives and their
stories we are sharing with the world a story
they arenrsquot able to explain with words
wwwangelman-asaorg
Click here to buy the digital edition
(ebook 3 euros)
Click here to buy the paper edition
(20 euros shipping included)
Order online
The English version will be published soon
WWWANGELMANTODAYCOM November December 2015
The Angel Wings Foundation is bringing you an Angelman
Today Exclusive Vacation Giveaway
Last year the Angel Wings Foundation hit
upon a novel idea How about giving
someone a vacation Someone who could
really use it hellipsomeone who deserves it
hellipsomeone who might actually need it to re-
set their lives Well we did just that and it
worked out better than we couldrsquove ever
imagined
So this year wersquore doing it again One
deserving Angelman family will win an all
expense paid vacation to a music and wine
event in Napa California called ldquoLive In The
Vinyardrdquo
We realize that this isnrsquot scientific research
or new breakthrough therapy techniques or
an awareness campaign All of those things
are certainly vital and crucial to our
collective journey as Angelman parents We
cheer them on and support them
wholeheartedly But we at the Angel Wings
Foundation want to wrap our arms around
the Angelman community and give hugs
wherever and whenever we can We know
how fatiguing constant caregiving can be
We also know how isolating it can be for the
Angel to only see the same people day in and
day out So this ldquoAngel Week Offrdquo is just as
much for the Angels as it is for the parents
We will send in a male and female caregiver
to the familyrsquos home to give the Angel a
week off as well Activities will be planned
every day that donrsquot include mom and dad
After all everybody needs a break from
mom and dad sometimes Besides mom and
dad will be getting a massage or golfing or
horseback riding or drinking wine and
listening to music somewhere in Northern
California
So herersquos what you do hellipwrite an essay (500
words or less) describing your Angelman
journey We all have one and they are all
deserving of a great vacation But we can only
do one at a time right now hellipsorry An all-star
panel of judges will read the entries and
narrow them down to a top 5 The they will re-
read them and ONE family will win the
vacation
The panel consists of people from Make-A-
Wish Best Buddies Special Olympics
Angelman Today and one board member from
the Angel Wings Foundation I donrsquot read
them I just get to call you and tell you yoursquove
won hellipI love that part
All entries must be in by Thanksgiving Day
2015 A winner will be chosen and announced
on Christmas Eve hellipwhat a great Christmas
gift Then we will start making arrangements
for the vacation that will take place in April of
2016 A family member or designated care
giver (in charge) must be present with our
caregivers So keep that part in mind Safety
first
Last yearrsquos winners Mary and Rory were so
moved by the experience they have asked if
they can donate to this yearrsquos winner I think
that speaks for itself They sent in a video to
encourage everyone to enter
Hopefully one day wersquoll be able to do this
many times a year But for this year we canrsquot
wait to read the entries and award some
amazing Angel family a break and a time they
will never forget
We love you all Now get to writing
Email they essay entry to
AngelsWeekOffangelmantodaycom
WWWANGELMANTODAYCOM November December 2015
WWWANGELMANTODAYCOM November December 2015
WOULD YOU LIKE TO CONTRIBUTE
We welcome all Angelman foundations parents care takers physicians and researchers
Email articles and pictures to Lizzieangelmantodaycom
Holiday Gift Guide
Radiance Floor Lamp Night Light Star Projector
Chewbeads Military Dog Tags
Krazy Gears Sensory Weighted Blanket
Senseez Vibrating Pillow Crazy Aaronrsquos Thinking Putty
By Kat Adams Melissa is 12 years old and has Angelman
syndrome UPD She loves to play games and
laugh at her big Brother Jacobs jokes she has a
wicked sense of humor
Melissa won the Child of courage award at an
event in her home town I was very proud that
her fellow citizens chose to recognize her daily
struggles and her massive achievements in this
way
Melissa experiences life in such a way that
every day is an adventure she brings so much
love and happiness into both mine and Jacobs
lives
We have set up a small Foundation in Melissas
name to help support research into a cure for
Angelman syndrome and have had many good
times with our fundraising events taking part
in things such as skydiving and even carrying
Melissa in a sedan chair for 5 miles
Life is never dull with a child like Melissa
Lots of tears along the way but much more
laughter
Angels in Action
Last year was such a success we are doing it again Enter a picture of your loved one
with Angelman Syndrome Get your friends and family voting and they could be on
the January cover of Angelman Today Watch our Facebook page for details
2 16
2014 Cover
2015 Cover
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
The Meerdo Family
Kathryn Matt and Stetson from Chip at AS event
Brian and Drew Fitzgerald annual Blarney CupYaron Werber
Because of you AS families benefit
THANK YOU to our phenomenal supporters this past yearHoly Cow Our AS friends and families have truly impressed our socks off this year Your creativity and dedication is shattering past records and touching lives deeply We at the ASF are humbled and honored to have had independent fundraisers raise more than $100000 for the AS community to date
Check out what just a few of our families have done in 2015
Family Fun Day - Michael Drzewiecki and company
Berto and Minnie with their daughter Pam
Annual Tractor Cruise - Horton Kansas
Because of you AS families benefit
THANK YOU to every individual and organization that played a role in these fundraisers either by spearheading attending or donating to these events
Blarney Cup Paddle Tournament The Fitzgeraldrsquos in Ohio $25450
Meerdo Annual Golf Tournament The Meerdorsquos in Utah $19980
Chip Away at AS Golf Tournament The Elyrsquos in Georgia $11683
Tractor Cruise The Olsenrsquos in Kansas $5350
Cure for the Angels Family Day Angelique Tuthill in New York $4747
Discover Day Camp Christina Polleto in New York $4309
Yaron Werber of Ovid Therapeutics raised $3953 for ASF at the Brooklyn Rock n Roll 12 Marathon
Hauser Junior High School Fundraiser in Westchester New York $3535
Custom Harley Davidson Bike Show Noel Perez and Berto Castellanos in California $3360
Pardi Gras Promotion and Sales Proceeds $2500
Tierrarsquos Event $2435
Family Fun Day Michael Drzewiecki in New York $2338
The Hope Classic at Lower Merion High School in Medinah NY $2342
Run Like A Mother 5k Tiffany Cruikshank in Hinsdale Illinois $1880
Oakland Arsquos Fundraiser in California $1345
7th Street Sportsmen Club Fundraiser in Pennsylvania $1000
THANK YOU to all of the fundraisers who have brought in more than $100000 of donations in 2015 We are very excited at the possibilities and creativity our families will bring in 2016
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Summit4Angelman
Father to young boy with AS climbs Mt Kilimanjaro to raise awareness of ASFrom Kyle himself
Irsquom going to take 8 days to climb up the worldrsquos tallest freestanding mountain to raise awareness for Angelman syndrome and Irsquove realized during my training that I donrsquot think I can do it alone Of course Irsquom going up with a great group looking forward to helping the cause in any way they can but Irsquove found such strength in keeping focused on why Irsquom doing this and every time I ldquopicturerdquo my son Madden it keeps me going when I desperately want to quit or cut corners in training If I keep in mind how my son never quits and overcomes his challenges with a smile I realize this mountain isnrsquot quite as tall I as first thought The point ishellipwithout Madden this climb seems a lot more difficult Which got me thinking what if I have an army of Angels with me every step of the climb Irsquom asking you to send me a picture of your Angel so I can take them to the top of Kilimanjaro with me Each photo and story you send me will provide the strength I need to keep going when the air is thin the weather is cold and my head is pounding I will do everything in my power to get to the top with them My chances will be far better with each person I take up with me If I make it to the Summit I promise they will see the view with me at 19341 feet
Visit Kylersquos personal blog at wwwsummit4angelmancom to find out more about Kylersquos journey
How can you helpbull Share your personal Summit story of accomplishment
on Facebook and Twitter and include the hashtag Summit4Angelman
bull Introduce Angelman syndrome to new peoplehellipKylersquos goal is to raise awareness of AS and he wants to reach 19341mdashthatrsquos one new person for every foot that Mt Kilimanjaro is tall
bull Share a photo of your loved one with AS (send to kyrooneyoutlookcom) for Kyle to take to the top of Mt Kilimanjaro
Looks Whatrsquos Shouted From the Mountaintop Angelman Syndrome Awareness
ASF Communication Training Series
Having challenges with helping your loved one with AS better communicate We have the resource for you In collaboration with several AS communication experts the ASF has created a FREE communication resource that you can access AT ANY TIME the ASF Communication Training Series This Series takes all of the hours of great communication workshops and breaks them down into smaller digestible parts so that you and your individual with AS can reach herhis greatest communication success at any age Using web-based teaching the Series is designed to be sequential and you can join at any time and proceed through the training at your childrsquos pace of learning Click here for more and to access the schedule past webinar recordings and handouts
Meet the experts
ERIN SHELDON M EDErin earned her Masters of Education studying the learning characteristics of students with AS Erin works as an assistive technology consultant with a focus on supporting students with complex learning needs to access the general curriculum in inclusive classrooms She founded the Angelman Literacy
Project an initiative to support families and school teams to foster emergent literacy development in students with AS She presents professional development workshops and webinars across North America and Europe including at conferences such as Closing the Gap and ATIA and has authored manuals book chapters and journal articles
DR CAROLINE MUSSELWHITE CCC-SLPDr Musselwhite is an assistive technology specialist with more than 35 years of experience working with children and adolescents with significant disabilities in a variety of settings including Head Start developmental day programs homes and the public schools Dr
Musselwhite has written a number of textbooks and ldquohow-tordquo books on a range of topics and has also authored many books and software programs for youth with disabilities She has presented thousands of workshops throughout North and South America Australia Europe and Africa and is a founding member and Fellow of the International Society for Augmentative and Alternative Communication
MAUREEN NEVERS MS CCC-SLP LICENSED SPEECH-LANGUAGE PATHOLOGIST AUGMENTATIVE COMMUNICATION SPECIALISTMaureen earned a BS in Communication Disorders from the University of Massachusetts at Amherst in 1991 then earned a MS in Speech-Language
Pathology from the University of Vermont in 1993 Her graduate work included participation in a comprehensive training program in AAC She worked for Easter Seals in Massachusetts for eleven years before joining the Center on Disability and Community Inclusion at the University of Vermont eleven years ago She currently works as an Augmentative Communication Specialist with the Vermont I-Team where she is part of an interdisciplinary team that consults with school teams across the state to support individuals with complex communication needs
Communication training you can understand and use
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
MARY-LOUISE BERTRAMMary-Louise Bertram is a qualified Early Childhood Teacher from Perth Western Australia with special qualifications and training in the areas of communication sensory processing and literacy supports for children with complex disabilities Mary-Louise became involved with the AS community in 2007 while
teaching a class of six children four of whom had AS (all Del +) Since then Mary-Louise has worked with people with AS of all ages across Western Australia in the first statewide comprehensive AS-specific communication intervention of its kind She has supported families across the globe to advocate for their childrsquos right to high-quality communication and education intervention Mary-Louise currently works in private practice supporting individuals with complex disabilities (and their families) with communication and literacy
Families are also encouraged to support each other and share tips via the Seriesrsquo private ASF Communication Training Series Facebook group
Twenty years ago we never would have imagined that so many generous people like you would open their hearts to help those affected by AS Your generosity eases the financial and emotional burden on families by supporting our family resource program and has helped our researchers make significant breakthroughs in treatments and potential cures for AS Without you there would be no us We are forever grateful for your support
Click here to make a contribution to the ASFrsquos end-of-year appeal All donations are 100 tax deductible per IRS regulations
Itrsquos ALL because of YOU
WWWANGELMANTODAYCOM November December 2015
By Cass Gamero
My sons name is Alexander and he was
recently diagnosed in July 2015 Hes only
18 months old and is loved by all Anyone
who meets him cant help but be
memorized by his long eye lashes amp
beaming smile When you see him you
cant help but smile My son also has some
vision problems but is getting better He
loves his toy keys and could recognize his
bottle from anywhere Hes lovable
friendly joyful and bright
Angels in Action Celebrating the Abilities of our Angels
Gareth Edwards (Star Wars Director) acknowledges
The force is strong in the Angelman Alliance
It is often said that parents will do anything for their children A rare
disease called Angelman Syndrome is proving testimony to this fact
Driven by an unstoppable love for their children parent organisations
from 15 countries have formed an alliance to work together to progress
research that may help their children to speak run and live life to their
full potential As Gareth Edwards patron of the UK Charity that hosted
this yearsrsquo conference in Liverpool England said during his speech at
the conference ldquoAngels go further and beyondrdquo
With the support of ISIS pharmaceuticals recent findings by professor Art Beaudet (USA) are expected to
progress to clinical trials Results from other researchers in collaboration with pharmaceutical companies
also have promising results to improve the quality of life for children amp adults with Angelman Syndrome
Initially having to overcome language barriers cultural differences and different legal systems the parent
organisations created an international Alliance on Angelman Syndrome (ASA) to drive research forward
pooling resources and funds In the first two years over half a million eurorsquos (550000-) was raised with
more parent organisations worldwide continuing to join The parent organisations met this year in
Liverpool during the 50th anniversary of Angelman Syndrome At this conference representatives came
from England Ireland Belgium Netherlands Germany Austria France Italy Portugal Japan Israel
Hungary Poland Finland and Switzerland
As professor Ype Elgersma (NL) said ldquoThese are very exciting times because we might actually have the
possibility to reverse a severe genetic diseaserdquo Therefore the need to get things going is stronger than ever
within the Alliance and the need for more funding is evident Because in the end every parent wants their
child to be as happy and healthy as possible
Everything we do we do for our Angels wwwangelmanallianceor g
For information about the Alliance the research and other questions you can contact Betty Willemsen
bettywillemsenninafoundationeu
Dr Harry Angelman
1915 ndash 1996
El Dr Harry Angelman fue un meacutedico Ingleacutes quien
identificoacute lo que hoy en diacutea se llama Siacutendrome de
Angelman
Nacioacute en Birkenhead Inglaterra Le fascinaba el idioma
y la cultura de Italia
El fue el primero quien observoacute treacutes nintildeos no
relacionados quienes demostraban siacutentomas similares ndash
atrasos severos intelectuales un modo de andar que era
espasmoacutedico y riacutegido ausencia del hablar
convulsiones y una disposicioacuten contento
Luego duranted unas vacaciones en Italia descubrioacute
una pintura llamada ldquoUn Nintildeo con una Marionetardquo
creado por el artista del Renascimiento Giovanni
Francesco Caroto en el museo Castelvecchio en
Verona La pintura le hizo pensar en los nintildeos que eran
sus pacientes y le condujo a publicar un artiacuteculo
profesional en el antildeo 1965 que describiacutea lo que el
llamaba ldquoNintildeos Marionetasrdquo En aquel momento la
importancia de su artiacuteculo no fue reconocido como algo
importante
No pasoacute nada mas hasta Charles A Williams y Jaime L
Frias del departamento de Pediacuteatra Divisiacuteon de
Geneacutetica de la Universidad de Florida Colegio de
Medicina de Gainesville Florida sometieron un
artiacuteculo a la Revista Americana de Geneacutetica Meacutedica
explicando estudios de seacuteis pacientes comparando sus
datos con los de informes previos ndash incluyendo atrasos
intelectuales severos el andar como un ldquomarionetardquo
anormalidades cranio-faciales y espisodios frecuentes
de risas De repente se notoacute que eso era mucho maacutes
comuacuten de lo que anteriormente se creiacutea Ellos
propusieron ponerle el nombre de Siacutendrome de
Angelman en honor del Dr Harry Angelman
La Historia del Siacutendrome de Angelman (Spanish Translation)
Angelman Today
Gareth Edwards (Directeur de Star Wars) lrsquoaffirme la Force est avec lrsquoAngelman Syndrome Alliance (ASA)
On dit souvent que les parents feraient tout pour leurs enfants et crsquoest ce qui se veacuterifie agrave lrsquooccasion drsquoune maladie rare appeleacutee le syndrome drsquoAngelman Animeacutees drsquoun amour infini pour leurs enfants des organisations parentales de 15 pays ont formeacute une alliance dans le but de faire avancer la recherche qui permettra agrave ces enfants de parler courir et vivre leur vie pleinement Comme lrsquoaffirmait dans son intervention Gareth Edwards soutien de lrsquoassociation de bienfaisance anglaise qui accueillait cette anneacutee la confeacuterence internationale agrave Liverpool laquo Les Anges vont plus loin et au-delagrave raquo
De reacutecentes deacutecouvertes dues par le Professeur Art Beaudet (USA) avec le soutien des laboratoires pharmaceutiques ISIS vont conduire agrave des essais cliniques Drsquoautres chercheurs soutenus par des socieacuteteacutes pharmaceutiques ont obtenu des reacutesultats prometteurs pour ameacuteliorer la qualiteacute de vie des enfants et des adultes atteints du syndrome drsquoAngelman
Surmontant les obstacles dus aux langues aux diffeacuterences culturelles et leacutegales les organisations parentales ont creacuteeacute lrsquoAlliance du Syndrome drsquoAngelman (ASA) visant agrave faire progresser la recherche et agrave mettre en commun les ressources et les financements Dans les deux premiegraveres anneacutees 550 000 euro ont eacuteteacute reacuteunis et drsquoautres organisations venues du monde entier souhaitent srsquoy associer Cette anneacutee les organisations de parents se sont rencontreacutees agrave Liverpool dans le cadre du 50egraveme anniversaire de lrsquoidentification du syndrome Eacutetaient repreacutesenteacutes lrsquoAngleterre lrsquoIrlande la Belgique les Pays Bas lrsquoAllemagne lrsquoAutriche la France lrsquoItalie le Portugal le Japon Israeumll la Hongrie la Pologne la Finlande et la Suisse
Comme le disait le Professeur Ype Elgersma (NL) laquo Nous vivons des temps prometteurs car nous sommes en mesure drsquoinverser une grave maladie geacuteneacutetique raquo Crsquoest pourquoi il est de plus en plus neacutecessaire de renforcer notre action et de trouver drsquoautres financements Parce qursquoil est clair que chaque parent souhaite que son enfant vive heureux et en bonne santeacute
Tout ce que nous faisons nous le faisons pour nos Anges wwwangelmanallianceorg
Pour toute information sur lrsquoAlliance la recherche et drsquoautres questions vous pouvez contacter Betty Willemsen bettywillemsenninafoundationeu
Angelman Today
God only gives us what He is willing to walk us through
-Joell Gingrich Ketcham
ldquo ldquo
ldquo
Adding youtube video
platform to Angelman Today
Video content will include bull Interviews
bull Product Reviews
bull Latest Research
bull How To videos
bull Parent tips and interviews
bull Much more
Email Lizzieangelmantodaycom if you
would like to participate
Announcements
We are expanding Angelman Today to include a new
platform of video media
To do this we will be making some changes that will
include the publishing schedule for the online digital
magazine Starting in January 2016 we will start
publishing Angelman Today quarterly 4 information-
packed editions a year
Subscriptions of the online magazine will remain
FREE
Subscribing to the YouTube channel is also FREE
We welcome all Angelman foundations parents
care takers physicians and researchers to
contribute Deadlines are
bull December 10
bull March 10
bull June 10
bull September 10
Show your support for Angelman Today and subscribe
WWWANGELMANTODAYCOM November December 2015
Toby B Kroger in Kentucky Scotty at Wegmans in NY
There are many challenges that come along with being
a caretaker of an individual with special needs
including a task that for many may be simple a trip
that we all must do regularly which is shop for
groceries
The best inventions are usually created from a persons
desire to satisfy a need or to solve a problem they
encounter in their own life One set of parents did just
that Drew Ann and David Long have three children
Caroline is their middle child she was diagnosed with
Rett syndrome The challenge came when Drew Ann
went grocery shopping with her kids She had a
Making Shopping A Little
Easier This Holiday Season helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
toddler and Caroline in her wheelchair The problem
presented itself as in the form of a question ldquoHow
do you push a wheelchair and a shopping cartrdquo
Drew Ann had the answer She was able to vision the
cart and sat in her car and sketched it out on paper
She knew she was not the first to have this dilemma
nor would she be the last
Carolinersquos Carts can now be found at some select
retailers You can visit wwwcarolinescartcom to
find a location near you
Parents we need your help We at Angelman Today
are calling for action There are not enough stores
with Carolinersquos carts Parents it is up to us We are
the ones that need them so we have to be the ones to
request them at our local retailers Some stores like
Target Shoprite Publix Lucky and Wegmans are
starting to have them available If they are not
currently at a store near you just ask the manager
You will be helping not only your family but the
many other families that may not yet even know this
helpful cart exists
WWWANGELMANTODAYCOM November December 2015
Thank you A big thanks to all of the contributors that help bring you Angelman Today
Angelman Today Supporters
If I Need Help ndash wwwifineedhelporg
All of the Angelman and
Associated
Foundations
across the globe
Additional Contributors
Kat Adams
Maria Cano Moraleda
Erin Bates
Angelman Today is a lifestyle guide to achieving better health for individuals with Angelman Syndrome and their families It is written with your needs in mind but is not a substitute for consulting with your physician or other health care providers The publisher and authors are not responsible for any adverse effects or consequences resulting from the use of the suggestions products or procedures that appear on this website or online magazine All matters regarding your health should be supervised by a licensed health care physician Copyright 2014 Angelman Today LLC All rights reserved worldwide
CONTRIBUTORS
Marilyn Kennedy
Assistant Editor Marilynangelmantodaycom
Sybille Kraft Bellamy
Parent Expert in Nutrition
And LGIT diet FacebookcomAngelmanSyndromeDiet
STAY CONNECTED ON THE GO
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Dr Harry Angelman
1915 ndash 1996
Dr Harry Angelman was an English physician
who identified what is now known as Angelman
Syndrome
He first observed three children who were not
related but showed similar symptoms of severe
intellectual delay stiff jerky gait lack of speech
seizures motor disorders and happy demeanors
Although Dr Angelman was born in Birkenhead
England he was an enthusiast for the language
and country of Italy And it was while vacationing
in Italy he observed an oil painting called A Boy
with a Puppet by the renaissance artist Giovanni
Francesco Caroto at the Castelvecchio museum in
Verona Reminded of the children hersquod observed
Dr Angelman published a paper in 1965 that
described what he called ldquopuppet childrenrdquo At
this time his paper was not immediately
recognized as important
It wasnrsquot until 1982 when Charles A Williams
and Jaime L Frias of the department of Pediatrics
Division of Genetics University of Florida
College of Medicine Gainesville submitted a
paper to the American Journal of Medical
Genetics reporting studies of six patients and
comparing their data to those from previous
reports - severe developmental delay ldquopuppet-
likerdquo gait craniofacial abnormalities and frequent
episodes of laughter- that it became clear the
syndrome was more common than previously
thought They proposed the name of this disorder
be changed to Angelman Syndrome
The History of Angelman Syndrome
Angelman Today
Books Recommended by Parents
Connect with us on
Thanks for your support
Please Share Angelman Today
wwwangelmantodaycom
WWWANGELMANTODAYCOM November December 2015
Libro Vivir con un Angel
Se trata de un libro escrito por 25 familias de la
Asociacioacuten contando sus propias experiencias
con un Angelman Un libro imprescindible para
comprender los que diariamente las familias
viven
Se trata de un libro escrito por 25
familias de la Asociacioacuten contando sus
propias experiencias con un Angelman
Un libro imprescindible para comprender
los que diariamente las familias viven
Hemos analizado los precios de envio al
extranjero y sale sobre 10euro cada libro El
que este interasado en que le enviemos
un libro al extranjero debera pagarlo con
tarjeta y a 20euro con gastos de envio
incluidos
Libro Vivir con un Angel para envios extranjero
httpwwwangelman-asaorg
Buy your copy
Compre su copia
From all of us at
WWWANGELMANTODAYCOM November December 2015
New Book ldquoLife with an Angel
ldquoWhat is Angelman Syndromerdquo That is usually
the first question we ask the doctor as soon as our
child is diagnosed with this rare disease And
then come the follow-up questions What can we
do Is there a treatment What is their life
expectancy
As soon as we become aware of the fact that
there is no treatment or cure our whole life is
turned upside down Each individual family deals
with the situation the best way they can Some
choose denial However sooner or later they will
try to contact other families in the same situation
who will be able to understand to share their
own experience and offer support in bad times
and celebrate with us the good times
All Angel families would have loved to hear
about the syndrome from a more positive and
closer point of view than that offered by doctors
And so 25 families belonging to the Spanish
Angelman Syndrome Association decided to
write down their personal stories in the hope of
spreading the word on Angelman Syndrome and
especially with the determination to help those
who in the future will come face to face with this
diagnosis
We want them to know that they are not alone
and that there is a life and hope beyond the
syndrome It may be difficult at times but it will
bring moments of total happiness more than we
could have imagined
And most importantly the book is a tribute to
our sons and daughters it is their lives and their
stories we are sharing with the world a story
they arenrsquot able to explain with words
wwwangelman-asaorg
Click here to buy the digital edition
(ebook 3 euros)
Click here to buy the paper edition
(20 euros shipping included)
Order online
The English version will be published soon
WWWANGELMANTODAYCOM November December 2015
The Angel Wings Foundation is bringing you an Angelman
Today Exclusive Vacation Giveaway
Last year the Angel Wings Foundation hit
upon a novel idea How about giving
someone a vacation Someone who could
really use it hellipsomeone who deserves it
hellipsomeone who might actually need it to re-
set their lives Well we did just that and it
worked out better than we couldrsquove ever
imagined
So this year wersquore doing it again One
deserving Angelman family will win an all
expense paid vacation to a music and wine
event in Napa California called ldquoLive In The
Vinyardrdquo
We realize that this isnrsquot scientific research
or new breakthrough therapy techniques or
an awareness campaign All of those things
are certainly vital and crucial to our
collective journey as Angelman parents We
cheer them on and support them
wholeheartedly But we at the Angel Wings
Foundation want to wrap our arms around
the Angelman community and give hugs
wherever and whenever we can We know
how fatiguing constant caregiving can be
We also know how isolating it can be for the
Angel to only see the same people day in and
day out So this ldquoAngel Week Offrdquo is just as
much for the Angels as it is for the parents
We will send in a male and female caregiver
to the familyrsquos home to give the Angel a
week off as well Activities will be planned
every day that donrsquot include mom and dad
After all everybody needs a break from
mom and dad sometimes Besides mom and
dad will be getting a massage or golfing or
horseback riding or drinking wine and
listening to music somewhere in Northern
California
So herersquos what you do hellipwrite an essay (500
words or less) describing your Angelman
journey We all have one and they are all
deserving of a great vacation But we can only
do one at a time right now hellipsorry An all-star
panel of judges will read the entries and
narrow them down to a top 5 The they will re-
read them and ONE family will win the
vacation
The panel consists of people from Make-A-
Wish Best Buddies Special Olympics
Angelman Today and one board member from
the Angel Wings Foundation I donrsquot read
them I just get to call you and tell you yoursquove
won hellipI love that part
All entries must be in by Thanksgiving Day
2015 A winner will be chosen and announced
on Christmas Eve hellipwhat a great Christmas
gift Then we will start making arrangements
for the vacation that will take place in April of
2016 A family member or designated care
giver (in charge) must be present with our
caregivers So keep that part in mind Safety
first
Last yearrsquos winners Mary and Rory were so
moved by the experience they have asked if
they can donate to this yearrsquos winner I think
that speaks for itself They sent in a video to
encourage everyone to enter
Hopefully one day wersquoll be able to do this
many times a year But for this year we canrsquot
wait to read the entries and award some
amazing Angel family a break and a time they
will never forget
We love you all Now get to writing
Email they essay entry to
AngelsWeekOffangelmantodaycom
WWWANGELMANTODAYCOM November December 2015
WWWANGELMANTODAYCOM November December 2015
WOULD YOU LIKE TO CONTRIBUTE
We welcome all Angelman foundations parents care takers physicians and researchers
Email articles and pictures to Lizzieangelmantodaycom
Holiday Gift Guide
Radiance Floor Lamp Night Light Star Projector
Chewbeads Military Dog Tags
Krazy Gears Sensory Weighted Blanket
Senseez Vibrating Pillow Crazy Aaronrsquos Thinking Putty
By Kat Adams Melissa is 12 years old and has Angelman
syndrome UPD She loves to play games and
laugh at her big Brother Jacobs jokes she has a
wicked sense of humor
Melissa won the Child of courage award at an
event in her home town I was very proud that
her fellow citizens chose to recognize her daily
struggles and her massive achievements in this
way
Melissa experiences life in such a way that
every day is an adventure she brings so much
love and happiness into both mine and Jacobs
lives
We have set up a small Foundation in Melissas
name to help support research into a cure for
Angelman syndrome and have had many good
times with our fundraising events taking part
in things such as skydiving and even carrying
Melissa in a sedan chair for 5 miles
Life is never dull with a child like Melissa
Lots of tears along the way but much more
laughter
Angels in Action
Last year was such a success we are doing it again Enter a picture of your loved one
with Angelman Syndrome Get your friends and family voting and they could be on
the January cover of Angelman Today Watch our Facebook page for details
2 16
2014 Cover
2015 Cover
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
The Meerdo Family
Kathryn Matt and Stetson from Chip at AS event
Brian and Drew Fitzgerald annual Blarney CupYaron Werber
Because of you AS families benefit
THANK YOU to our phenomenal supporters this past yearHoly Cow Our AS friends and families have truly impressed our socks off this year Your creativity and dedication is shattering past records and touching lives deeply We at the ASF are humbled and honored to have had independent fundraisers raise more than $100000 for the AS community to date
Check out what just a few of our families have done in 2015
Family Fun Day - Michael Drzewiecki and company
Berto and Minnie with their daughter Pam
Annual Tractor Cruise - Horton Kansas
Because of you AS families benefit
THANK YOU to every individual and organization that played a role in these fundraisers either by spearheading attending or donating to these events
Blarney Cup Paddle Tournament The Fitzgeraldrsquos in Ohio $25450
Meerdo Annual Golf Tournament The Meerdorsquos in Utah $19980
Chip Away at AS Golf Tournament The Elyrsquos in Georgia $11683
Tractor Cruise The Olsenrsquos in Kansas $5350
Cure for the Angels Family Day Angelique Tuthill in New York $4747
Discover Day Camp Christina Polleto in New York $4309
Yaron Werber of Ovid Therapeutics raised $3953 for ASF at the Brooklyn Rock n Roll 12 Marathon
Hauser Junior High School Fundraiser in Westchester New York $3535
Custom Harley Davidson Bike Show Noel Perez and Berto Castellanos in California $3360
Pardi Gras Promotion and Sales Proceeds $2500
Tierrarsquos Event $2435
Family Fun Day Michael Drzewiecki in New York $2338
The Hope Classic at Lower Merion High School in Medinah NY $2342
Run Like A Mother 5k Tiffany Cruikshank in Hinsdale Illinois $1880
Oakland Arsquos Fundraiser in California $1345
7th Street Sportsmen Club Fundraiser in Pennsylvania $1000
THANK YOU to all of the fundraisers who have brought in more than $100000 of donations in 2015 We are very excited at the possibilities and creativity our families will bring in 2016
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Summit4Angelman
Father to young boy with AS climbs Mt Kilimanjaro to raise awareness of ASFrom Kyle himself
Irsquom going to take 8 days to climb up the worldrsquos tallest freestanding mountain to raise awareness for Angelman syndrome and Irsquove realized during my training that I donrsquot think I can do it alone Of course Irsquom going up with a great group looking forward to helping the cause in any way they can but Irsquove found such strength in keeping focused on why Irsquom doing this and every time I ldquopicturerdquo my son Madden it keeps me going when I desperately want to quit or cut corners in training If I keep in mind how my son never quits and overcomes his challenges with a smile I realize this mountain isnrsquot quite as tall I as first thought The point ishellipwithout Madden this climb seems a lot more difficult Which got me thinking what if I have an army of Angels with me every step of the climb Irsquom asking you to send me a picture of your Angel so I can take them to the top of Kilimanjaro with me Each photo and story you send me will provide the strength I need to keep going when the air is thin the weather is cold and my head is pounding I will do everything in my power to get to the top with them My chances will be far better with each person I take up with me If I make it to the Summit I promise they will see the view with me at 19341 feet
Visit Kylersquos personal blog at wwwsummit4angelmancom to find out more about Kylersquos journey
How can you helpbull Share your personal Summit story of accomplishment
on Facebook and Twitter and include the hashtag Summit4Angelman
bull Introduce Angelman syndrome to new peoplehellipKylersquos goal is to raise awareness of AS and he wants to reach 19341mdashthatrsquos one new person for every foot that Mt Kilimanjaro is tall
bull Share a photo of your loved one with AS (send to kyrooneyoutlookcom) for Kyle to take to the top of Mt Kilimanjaro
Looks Whatrsquos Shouted From the Mountaintop Angelman Syndrome Awareness
ASF Communication Training Series
Having challenges with helping your loved one with AS better communicate We have the resource for you In collaboration with several AS communication experts the ASF has created a FREE communication resource that you can access AT ANY TIME the ASF Communication Training Series This Series takes all of the hours of great communication workshops and breaks them down into smaller digestible parts so that you and your individual with AS can reach herhis greatest communication success at any age Using web-based teaching the Series is designed to be sequential and you can join at any time and proceed through the training at your childrsquos pace of learning Click here for more and to access the schedule past webinar recordings and handouts
Meet the experts
ERIN SHELDON M EDErin earned her Masters of Education studying the learning characteristics of students with AS Erin works as an assistive technology consultant with a focus on supporting students with complex learning needs to access the general curriculum in inclusive classrooms She founded the Angelman Literacy
Project an initiative to support families and school teams to foster emergent literacy development in students with AS She presents professional development workshops and webinars across North America and Europe including at conferences such as Closing the Gap and ATIA and has authored manuals book chapters and journal articles
DR CAROLINE MUSSELWHITE CCC-SLPDr Musselwhite is an assistive technology specialist with more than 35 years of experience working with children and adolescents with significant disabilities in a variety of settings including Head Start developmental day programs homes and the public schools Dr
Musselwhite has written a number of textbooks and ldquohow-tordquo books on a range of topics and has also authored many books and software programs for youth with disabilities She has presented thousands of workshops throughout North and South America Australia Europe and Africa and is a founding member and Fellow of the International Society for Augmentative and Alternative Communication
MAUREEN NEVERS MS CCC-SLP LICENSED SPEECH-LANGUAGE PATHOLOGIST AUGMENTATIVE COMMUNICATION SPECIALISTMaureen earned a BS in Communication Disorders from the University of Massachusetts at Amherst in 1991 then earned a MS in Speech-Language
Pathology from the University of Vermont in 1993 Her graduate work included participation in a comprehensive training program in AAC She worked for Easter Seals in Massachusetts for eleven years before joining the Center on Disability and Community Inclusion at the University of Vermont eleven years ago She currently works as an Augmentative Communication Specialist with the Vermont I-Team where she is part of an interdisciplinary team that consults with school teams across the state to support individuals with complex communication needs
Communication training you can understand and use
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
MARY-LOUISE BERTRAMMary-Louise Bertram is a qualified Early Childhood Teacher from Perth Western Australia with special qualifications and training in the areas of communication sensory processing and literacy supports for children with complex disabilities Mary-Louise became involved with the AS community in 2007 while
teaching a class of six children four of whom had AS (all Del +) Since then Mary-Louise has worked with people with AS of all ages across Western Australia in the first statewide comprehensive AS-specific communication intervention of its kind She has supported families across the globe to advocate for their childrsquos right to high-quality communication and education intervention Mary-Louise currently works in private practice supporting individuals with complex disabilities (and their families) with communication and literacy
Families are also encouraged to support each other and share tips via the Seriesrsquo private ASF Communication Training Series Facebook group
Twenty years ago we never would have imagined that so many generous people like you would open their hearts to help those affected by AS Your generosity eases the financial and emotional burden on families by supporting our family resource program and has helped our researchers make significant breakthroughs in treatments and potential cures for AS Without you there would be no us We are forever grateful for your support
Click here to make a contribution to the ASFrsquos end-of-year appeal All donations are 100 tax deductible per IRS regulations
Itrsquos ALL because of YOU
WWWANGELMANTODAYCOM November December 2015
By Cass Gamero
My sons name is Alexander and he was
recently diagnosed in July 2015 Hes only
18 months old and is loved by all Anyone
who meets him cant help but be
memorized by his long eye lashes amp
beaming smile When you see him you
cant help but smile My son also has some
vision problems but is getting better He
loves his toy keys and could recognize his
bottle from anywhere Hes lovable
friendly joyful and bright
Angels in Action Celebrating the Abilities of our Angels
Gareth Edwards (Star Wars Director) acknowledges
The force is strong in the Angelman Alliance
It is often said that parents will do anything for their children A rare
disease called Angelman Syndrome is proving testimony to this fact
Driven by an unstoppable love for their children parent organisations
from 15 countries have formed an alliance to work together to progress
research that may help their children to speak run and live life to their
full potential As Gareth Edwards patron of the UK Charity that hosted
this yearsrsquo conference in Liverpool England said during his speech at
the conference ldquoAngels go further and beyondrdquo
With the support of ISIS pharmaceuticals recent findings by professor Art Beaudet (USA) are expected to
progress to clinical trials Results from other researchers in collaboration with pharmaceutical companies
also have promising results to improve the quality of life for children amp adults with Angelman Syndrome
Initially having to overcome language barriers cultural differences and different legal systems the parent
organisations created an international Alliance on Angelman Syndrome (ASA) to drive research forward
pooling resources and funds In the first two years over half a million eurorsquos (550000-) was raised with
more parent organisations worldwide continuing to join The parent organisations met this year in
Liverpool during the 50th anniversary of Angelman Syndrome At this conference representatives came
from England Ireland Belgium Netherlands Germany Austria France Italy Portugal Japan Israel
Hungary Poland Finland and Switzerland
As professor Ype Elgersma (NL) said ldquoThese are very exciting times because we might actually have the
possibility to reverse a severe genetic diseaserdquo Therefore the need to get things going is stronger than ever
within the Alliance and the need for more funding is evident Because in the end every parent wants their
child to be as happy and healthy as possible
Everything we do we do for our Angels wwwangelmanallianceor g
For information about the Alliance the research and other questions you can contact Betty Willemsen
bettywillemsenninafoundationeu
Dr Harry Angelman
1915 ndash 1996
El Dr Harry Angelman fue un meacutedico Ingleacutes quien
identificoacute lo que hoy en diacutea se llama Siacutendrome de
Angelman
Nacioacute en Birkenhead Inglaterra Le fascinaba el idioma
y la cultura de Italia
El fue el primero quien observoacute treacutes nintildeos no
relacionados quienes demostraban siacutentomas similares ndash
atrasos severos intelectuales un modo de andar que era
espasmoacutedico y riacutegido ausencia del hablar
convulsiones y una disposicioacuten contento
Luego duranted unas vacaciones en Italia descubrioacute
una pintura llamada ldquoUn Nintildeo con una Marionetardquo
creado por el artista del Renascimiento Giovanni
Francesco Caroto en el museo Castelvecchio en
Verona La pintura le hizo pensar en los nintildeos que eran
sus pacientes y le condujo a publicar un artiacuteculo
profesional en el antildeo 1965 que describiacutea lo que el
llamaba ldquoNintildeos Marionetasrdquo En aquel momento la
importancia de su artiacuteculo no fue reconocido como algo
importante
No pasoacute nada mas hasta Charles A Williams y Jaime L
Frias del departamento de Pediacuteatra Divisiacuteon de
Geneacutetica de la Universidad de Florida Colegio de
Medicina de Gainesville Florida sometieron un
artiacuteculo a la Revista Americana de Geneacutetica Meacutedica
explicando estudios de seacuteis pacientes comparando sus
datos con los de informes previos ndash incluyendo atrasos
intelectuales severos el andar como un ldquomarionetardquo
anormalidades cranio-faciales y espisodios frecuentes
de risas De repente se notoacute que eso era mucho maacutes
comuacuten de lo que anteriormente se creiacutea Ellos
propusieron ponerle el nombre de Siacutendrome de
Angelman en honor del Dr Harry Angelman
La Historia del Siacutendrome de Angelman (Spanish Translation)
Angelman Today
Gareth Edwards (Directeur de Star Wars) lrsquoaffirme la Force est avec lrsquoAngelman Syndrome Alliance (ASA)
On dit souvent que les parents feraient tout pour leurs enfants et crsquoest ce qui se veacuterifie agrave lrsquooccasion drsquoune maladie rare appeleacutee le syndrome drsquoAngelman Animeacutees drsquoun amour infini pour leurs enfants des organisations parentales de 15 pays ont formeacute une alliance dans le but de faire avancer la recherche qui permettra agrave ces enfants de parler courir et vivre leur vie pleinement Comme lrsquoaffirmait dans son intervention Gareth Edwards soutien de lrsquoassociation de bienfaisance anglaise qui accueillait cette anneacutee la confeacuterence internationale agrave Liverpool laquo Les Anges vont plus loin et au-delagrave raquo
De reacutecentes deacutecouvertes dues par le Professeur Art Beaudet (USA) avec le soutien des laboratoires pharmaceutiques ISIS vont conduire agrave des essais cliniques Drsquoautres chercheurs soutenus par des socieacuteteacutes pharmaceutiques ont obtenu des reacutesultats prometteurs pour ameacuteliorer la qualiteacute de vie des enfants et des adultes atteints du syndrome drsquoAngelman
Surmontant les obstacles dus aux langues aux diffeacuterences culturelles et leacutegales les organisations parentales ont creacuteeacute lrsquoAlliance du Syndrome drsquoAngelman (ASA) visant agrave faire progresser la recherche et agrave mettre en commun les ressources et les financements Dans les deux premiegraveres anneacutees 550 000 euro ont eacuteteacute reacuteunis et drsquoautres organisations venues du monde entier souhaitent srsquoy associer Cette anneacutee les organisations de parents se sont rencontreacutees agrave Liverpool dans le cadre du 50egraveme anniversaire de lrsquoidentification du syndrome Eacutetaient repreacutesenteacutes lrsquoAngleterre lrsquoIrlande la Belgique les Pays Bas lrsquoAllemagne lrsquoAutriche la France lrsquoItalie le Portugal le Japon Israeumll la Hongrie la Pologne la Finlande et la Suisse
Comme le disait le Professeur Ype Elgersma (NL) laquo Nous vivons des temps prometteurs car nous sommes en mesure drsquoinverser une grave maladie geacuteneacutetique raquo Crsquoest pourquoi il est de plus en plus neacutecessaire de renforcer notre action et de trouver drsquoautres financements Parce qursquoil est clair que chaque parent souhaite que son enfant vive heureux et en bonne santeacute
Tout ce que nous faisons nous le faisons pour nos Anges wwwangelmanallianceorg
Pour toute information sur lrsquoAlliance la recherche et drsquoautres questions vous pouvez contacter Betty Willemsen bettywillemsenninafoundationeu
Angelman Today
God only gives us what He is willing to walk us through
-Joell Gingrich Ketcham
ldquo ldquo
ldquo
Adding youtube video
platform to Angelman Today
Video content will include bull Interviews
bull Product Reviews
bull Latest Research
bull How To videos
bull Parent tips and interviews
bull Much more
Email Lizzieangelmantodaycom if you
would like to participate
Announcements
We are expanding Angelman Today to include a new
platform of video media
To do this we will be making some changes that will
include the publishing schedule for the online digital
magazine Starting in January 2016 we will start
publishing Angelman Today quarterly 4 information-
packed editions a year
Subscriptions of the online magazine will remain
FREE
Subscribing to the YouTube channel is also FREE
We welcome all Angelman foundations parents
care takers physicians and researchers to
contribute Deadlines are
bull December 10
bull March 10
bull June 10
bull September 10
Show your support for Angelman Today and subscribe
WWWANGELMANTODAYCOM November December 2015
Toby B Kroger in Kentucky Scotty at Wegmans in NY
There are many challenges that come along with being
a caretaker of an individual with special needs
including a task that for many may be simple a trip
that we all must do regularly which is shop for
groceries
The best inventions are usually created from a persons
desire to satisfy a need or to solve a problem they
encounter in their own life One set of parents did just
that Drew Ann and David Long have three children
Caroline is their middle child she was diagnosed with
Rett syndrome The challenge came when Drew Ann
went grocery shopping with her kids She had a
Making Shopping A Little
Easier This Holiday Season helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
toddler and Caroline in her wheelchair The problem
presented itself as in the form of a question ldquoHow
do you push a wheelchair and a shopping cartrdquo
Drew Ann had the answer She was able to vision the
cart and sat in her car and sketched it out on paper
She knew she was not the first to have this dilemma
nor would she be the last
Carolinersquos Carts can now be found at some select
retailers You can visit wwwcarolinescartcom to
find a location near you
Parents we need your help We at Angelman Today
are calling for action There are not enough stores
with Carolinersquos carts Parents it is up to us We are
the ones that need them so we have to be the ones to
request them at our local retailers Some stores like
Target Shoprite Publix Lucky and Wegmans are
starting to have them available If they are not
currently at a store near you just ask the manager
You will be helping not only your family but the
many other families that may not yet even know this
helpful cart exists
WWWANGELMANTODAYCOM November December 2015
Thank you A big thanks to all of the contributors that help bring you Angelman Today
Angelman Today Supporters
If I Need Help ndash wwwifineedhelporg
All of the Angelman and
Associated
Foundations
across the globe
Additional Contributors
Kat Adams
Maria Cano Moraleda
Erin Bates
Angelman Today is a lifestyle guide to achieving better health for individuals with Angelman Syndrome and their families It is written with your needs in mind but is not a substitute for consulting with your physician or other health care providers The publisher and authors are not responsible for any adverse effects or consequences resulting from the use of the suggestions products or procedures that appear on this website or online magazine All matters regarding your health should be supervised by a licensed health care physician Copyright 2014 Angelman Today LLC All rights reserved worldwide
CONTRIBUTORS
Marilyn Kennedy
Assistant Editor Marilynangelmantodaycom
Sybille Kraft Bellamy
Parent Expert in Nutrition
And LGIT diet FacebookcomAngelmanSyndromeDiet
STAY CONNECTED ON THE GO
DOWNLOAD THE NEW ISSUU APP TODAY ON GOOGLE PLAY
AND NOW IN THE APP STORE
Dr Harry Angelman
1915 ndash 1996
Dr Harry Angelman was an English physician
who identified what is now known as Angelman
Syndrome
He first observed three children who were not
related but showed similar symptoms of severe
intellectual delay stiff jerky gait lack of speech
seizures motor disorders and happy demeanors
Although Dr Angelman was born in Birkenhead
England he was an enthusiast for the language
and country of Italy And it was while vacationing
in Italy he observed an oil painting called A Boy
with a Puppet by the renaissance artist Giovanni
Francesco Caroto at the Castelvecchio museum in
Verona Reminded of the children hersquod observed
Dr Angelman published a paper in 1965 that
described what he called ldquopuppet childrenrdquo At
this time his paper was not immediately
recognized as important
It wasnrsquot until 1982 when Charles A Williams
and Jaime L Frias of the department of Pediatrics
Division of Genetics University of Florida
College of Medicine Gainesville submitted a
paper to the American Journal of Medical
Genetics reporting studies of six patients and
comparing their data to those from previous
reports - severe developmental delay ldquopuppet-
likerdquo gait craniofacial abnormalities and frequent
episodes of laughter- that it became clear the
syndrome was more common than previously
thought They proposed the name of this disorder
be changed to Angelman Syndrome
The History of Angelman Syndrome
Angelman Today
Books Recommended by Parents
Connect with us on
Thanks for your support
Please Share Angelman Today
wwwangelmantodaycom
From all of us at
WWWANGELMANTODAYCOM November December 2015
New Book ldquoLife with an Angel
ldquoWhat is Angelman Syndromerdquo That is usually
the first question we ask the doctor as soon as our
child is diagnosed with this rare disease And
then come the follow-up questions What can we
do Is there a treatment What is their life
expectancy
As soon as we become aware of the fact that
there is no treatment or cure our whole life is
turned upside down Each individual family deals
with the situation the best way they can Some
choose denial However sooner or later they will
try to contact other families in the same situation
who will be able to understand to share their
own experience and offer support in bad times
and celebrate with us the good times
All Angel families would have loved to hear
about the syndrome from a more positive and
closer point of view than that offered by doctors
And so 25 families belonging to the Spanish
Angelman Syndrome Association decided to
write down their personal stories in the hope of
spreading the word on Angelman Syndrome and
especially with the determination to help those
who in the future will come face to face with this
diagnosis
We want them to know that they are not alone
and that there is a life and hope beyond the
syndrome It may be difficult at times but it will
bring moments of total happiness more than we
could have imagined
And most importantly the book is a tribute to
our sons and daughters it is their lives and their
stories we are sharing with the world a story
they arenrsquot able to explain with words
wwwangelman-asaorg
Click here to buy the digital edition
(ebook 3 euros)
Click here to buy the paper edition
(20 euros shipping included)
Order online
The English version will be published soon
WWWANGELMANTODAYCOM November December 2015
The Angel Wings Foundation is bringing you an Angelman
Today Exclusive Vacation Giveaway
Last year the Angel Wings Foundation hit
upon a novel idea How about giving
someone a vacation Someone who could
really use it hellipsomeone who deserves it
hellipsomeone who might actually need it to re-
set their lives Well we did just that and it
worked out better than we couldrsquove ever
imagined
So this year wersquore doing it again One
deserving Angelman family will win an all
expense paid vacation to a music and wine
event in Napa California called ldquoLive In The
Vinyardrdquo
We realize that this isnrsquot scientific research
or new breakthrough therapy techniques or
an awareness campaign All of those things
are certainly vital and crucial to our
collective journey as Angelman parents We
cheer them on and support them
wholeheartedly But we at the Angel Wings
Foundation want to wrap our arms around
the Angelman community and give hugs
wherever and whenever we can We know
how fatiguing constant caregiving can be
We also know how isolating it can be for the
Angel to only see the same people day in and
day out So this ldquoAngel Week Offrdquo is just as
much for the Angels as it is for the parents
We will send in a male and female caregiver
to the familyrsquos home to give the Angel a
week off as well Activities will be planned
every day that donrsquot include mom and dad
After all everybody needs a break from
mom and dad sometimes Besides mom and
dad will be getting a massage or golfing or
horseback riding or drinking wine and
listening to music somewhere in Northern
California
So herersquos what you do hellipwrite an essay (500
words or less) describing your Angelman
journey We all have one and they are all
deserving of a great vacation But we can only
do one at a time right now hellipsorry An all-star
panel of judges will read the entries and
narrow them down to a top 5 The they will re-
read them and ONE family will win the
vacation
The panel consists of people from Make-A-
Wish Best Buddies Special Olympics
Angelman Today and one board member from
the Angel Wings Foundation I donrsquot read
them I just get to call you and tell you yoursquove
won hellipI love that part
All entries must be in by Thanksgiving Day
2015 A winner will be chosen and announced
on Christmas Eve hellipwhat a great Christmas
gift Then we will start making arrangements
for the vacation that will take place in April of
2016 A family member or designated care
giver (in charge) must be present with our
caregivers So keep that part in mind Safety
first
Last yearrsquos winners Mary and Rory were so
moved by the experience they have asked if
they can donate to this yearrsquos winner I think
that speaks for itself They sent in a video to
encourage everyone to enter
Hopefully one day wersquoll be able to do this
many times a year But for this year we canrsquot
wait to read the entries and award some
amazing Angel family a break and a time they
will never forget
We love you all Now get to writing
Email they essay entry to
AngelsWeekOffangelmantodaycom
WWWANGELMANTODAYCOM November December 2015
WWWANGELMANTODAYCOM November December 2015
WOULD YOU LIKE TO CONTRIBUTE
We welcome all Angelman foundations parents care takers physicians and researchers
Email articles and pictures to Lizzieangelmantodaycom
Holiday Gift Guide
Radiance Floor Lamp Night Light Star Projector
Chewbeads Military Dog Tags
Krazy Gears Sensory Weighted Blanket
Senseez Vibrating Pillow Crazy Aaronrsquos Thinking Putty
By Kat Adams Melissa is 12 years old and has Angelman
syndrome UPD She loves to play games and
laugh at her big Brother Jacobs jokes she has a
wicked sense of humor
Melissa won the Child of courage award at an
event in her home town I was very proud that
her fellow citizens chose to recognize her daily
struggles and her massive achievements in this
way
Melissa experiences life in such a way that
every day is an adventure she brings so much
love and happiness into both mine and Jacobs
lives
We have set up a small Foundation in Melissas
name to help support research into a cure for
Angelman syndrome and have had many good
times with our fundraising events taking part
in things such as skydiving and even carrying
Melissa in a sedan chair for 5 miles
Life is never dull with a child like Melissa
Lots of tears along the way but much more
laughter
Angels in Action
Last year was such a success we are doing it again Enter a picture of your loved one
with Angelman Syndrome Get your friends and family voting and they could be on
the January cover of Angelman Today Watch our Facebook page for details
2 16
2014 Cover
2015 Cover
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
The Meerdo Family
Kathryn Matt and Stetson from Chip at AS event
Brian and Drew Fitzgerald annual Blarney CupYaron Werber
Because of you AS families benefit
THANK YOU to our phenomenal supporters this past yearHoly Cow Our AS friends and families have truly impressed our socks off this year Your creativity and dedication is shattering past records and touching lives deeply We at the ASF are humbled and honored to have had independent fundraisers raise more than $100000 for the AS community to date
Check out what just a few of our families have done in 2015
Family Fun Day - Michael Drzewiecki and company
Berto and Minnie with their daughter Pam
Annual Tractor Cruise - Horton Kansas
Because of you AS families benefit
THANK YOU to every individual and organization that played a role in these fundraisers either by spearheading attending or donating to these events
Blarney Cup Paddle Tournament The Fitzgeraldrsquos in Ohio $25450
Meerdo Annual Golf Tournament The Meerdorsquos in Utah $19980
Chip Away at AS Golf Tournament The Elyrsquos in Georgia $11683
Tractor Cruise The Olsenrsquos in Kansas $5350
Cure for the Angels Family Day Angelique Tuthill in New York $4747
Discover Day Camp Christina Polleto in New York $4309
Yaron Werber of Ovid Therapeutics raised $3953 for ASF at the Brooklyn Rock n Roll 12 Marathon
Hauser Junior High School Fundraiser in Westchester New York $3535
Custom Harley Davidson Bike Show Noel Perez and Berto Castellanos in California $3360
Pardi Gras Promotion and Sales Proceeds $2500
Tierrarsquos Event $2435
Family Fun Day Michael Drzewiecki in New York $2338
The Hope Classic at Lower Merion High School in Medinah NY $2342
Run Like A Mother 5k Tiffany Cruikshank in Hinsdale Illinois $1880
Oakland Arsquos Fundraiser in California $1345
7th Street Sportsmen Club Fundraiser in Pennsylvania $1000
THANK YOU to all of the fundraisers who have brought in more than $100000 of donations in 2015 We are very excited at the possibilities and creativity our families will bring in 2016
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Summit4Angelman
Father to young boy with AS climbs Mt Kilimanjaro to raise awareness of ASFrom Kyle himself
Irsquom going to take 8 days to climb up the worldrsquos tallest freestanding mountain to raise awareness for Angelman syndrome and Irsquove realized during my training that I donrsquot think I can do it alone Of course Irsquom going up with a great group looking forward to helping the cause in any way they can but Irsquove found such strength in keeping focused on why Irsquom doing this and every time I ldquopicturerdquo my son Madden it keeps me going when I desperately want to quit or cut corners in training If I keep in mind how my son never quits and overcomes his challenges with a smile I realize this mountain isnrsquot quite as tall I as first thought The point ishellipwithout Madden this climb seems a lot more difficult Which got me thinking what if I have an army of Angels with me every step of the climb Irsquom asking you to send me a picture of your Angel so I can take them to the top of Kilimanjaro with me Each photo and story you send me will provide the strength I need to keep going when the air is thin the weather is cold and my head is pounding I will do everything in my power to get to the top with them My chances will be far better with each person I take up with me If I make it to the Summit I promise they will see the view with me at 19341 feet
Visit Kylersquos personal blog at wwwsummit4angelmancom to find out more about Kylersquos journey
How can you helpbull Share your personal Summit story of accomplishment
on Facebook and Twitter and include the hashtag Summit4Angelman
bull Introduce Angelman syndrome to new peoplehellipKylersquos goal is to raise awareness of AS and he wants to reach 19341mdashthatrsquos one new person for every foot that Mt Kilimanjaro is tall
bull Share a photo of your loved one with AS (send to kyrooneyoutlookcom) for Kyle to take to the top of Mt Kilimanjaro
Looks Whatrsquos Shouted From the Mountaintop Angelman Syndrome Awareness
ASF Communication Training Series
Having challenges with helping your loved one with AS better communicate We have the resource for you In collaboration with several AS communication experts the ASF has created a FREE communication resource that you can access AT ANY TIME the ASF Communication Training Series This Series takes all of the hours of great communication workshops and breaks them down into smaller digestible parts so that you and your individual with AS can reach herhis greatest communication success at any age Using web-based teaching the Series is designed to be sequential and you can join at any time and proceed through the training at your childrsquos pace of learning Click here for more and to access the schedule past webinar recordings and handouts
Meet the experts
ERIN SHELDON M EDErin earned her Masters of Education studying the learning characteristics of students with AS Erin works as an assistive technology consultant with a focus on supporting students with complex learning needs to access the general curriculum in inclusive classrooms She founded the Angelman Literacy
Project an initiative to support families and school teams to foster emergent literacy development in students with AS She presents professional development workshops and webinars across North America and Europe including at conferences such as Closing the Gap and ATIA and has authored manuals book chapters and journal articles
DR CAROLINE MUSSELWHITE CCC-SLPDr Musselwhite is an assistive technology specialist with more than 35 years of experience working with children and adolescents with significant disabilities in a variety of settings including Head Start developmental day programs homes and the public schools Dr
Musselwhite has written a number of textbooks and ldquohow-tordquo books on a range of topics and has also authored many books and software programs for youth with disabilities She has presented thousands of workshops throughout North and South America Australia Europe and Africa and is a founding member and Fellow of the International Society for Augmentative and Alternative Communication
MAUREEN NEVERS MS CCC-SLP LICENSED SPEECH-LANGUAGE PATHOLOGIST AUGMENTATIVE COMMUNICATION SPECIALISTMaureen earned a BS in Communication Disorders from the University of Massachusetts at Amherst in 1991 then earned a MS in Speech-Language
Pathology from the University of Vermont in 1993 Her graduate work included participation in a comprehensive training program in AAC She worked for Easter Seals in Massachusetts for eleven years before joining the Center on Disability and Community Inclusion at the University of Vermont eleven years ago She currently works as an Augmentative Communication Specialist with the Vermont I-Team where she is part of an interdisciplinary team that consults with school teams across the state to support individuals with complex communication needs
Communication training you can understand and use
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
MARY-LOUISE BERTRAMMary-Louise Bertram is a qualified Early Childhood Teacher from Perth Western Australia with special qualifications and training in the areas of communication sensory processing and literacy supports for children with complex disabilities Mary-Louise became involved with the AS community in 2007 while
teaching a class of six children four of whom had AS (all Del +) Since then Mary-Louise has worked with people with AS of all ages across Western Australia in the first statewide comprehensive AS-specific communication intervention of its kind She has supported families across the globe to advocate for their childrsquos right to high-quality communication and education intervention Mary-Louise currently works in private practice supporting individuals with complex disabilities (and their families) with communication and literacy
Families are also encouraged to support each other and share tips via the Seriesrsquo private ASF Communication Training Series Facebook group
Twenty years ago we never would have imagined that so many generous people like you would open their hearts to help those affected by AS Your generosity eases the financial and emotional burden on families by supporting our family resource program and has helped our researchers make significant breakthroughs in treatments and potential cures for AS Without you there would be no us We are forever grateful for your support
Click here to make a contribution to the ASFrsquos end-of-year appeal All donations are 100 tax deductible per IRS regulations
Itrsquos ALL because of YOU
WWWANGELMANTODAYCOM November December 2015
By Cass Gamero
My sons name is Alexander and he was
recently diagnosed in July 2015 Hes only
18 months old and is loved by all Anyone
who meets him cant help but be
memorized by his long eye lashes amp
beaming smile When you see him you
cant help but smile My son also has some
vision problems but is getting better He
loves his toy keys and could recognize his
bottle from anywhere Hes lovable
friendly joyful and bright
Angels in Action Celebrating the Abilities of our Angels
Gareth Edwards (Star Wars Director) acknowledges
The force is strong in the Angelman Alliance
It is often said that parents will do anything for their children A rare
disease called Angelman Syndrome is proving testimony to this fact
Driven by an unstoppable love for their children parent organisations
from 15 countries have formed an alliance to work together to progress
research that may help their children to speak run and live life to their
full potential As Gareth Edwards patron of the UK Charity that hosted
this yearsrsquo conference in Liverpool England said during his speech at
the conference ldquoAngels go further and beyondrdquo
With the support of ISIS pharmaceuticals recent findings by professor Art Beaudet (USA) are expected to
progress to clinical trials Results from other researchers in collaboration with pharmaceutical companies
also have promising results to improve the quality of life for children amp adults with Angelman Syndrome
Initially having to overcome language barriers cultural differences and different legal systems the parent
organisations created an international Alliance on Angelman Syndrome (ASA) to drive research forward
pooling resources and funds In the first two years over half a million eurorsquos (550000-) was raised with
more parent organisations worldwide continuing to join The parent organisations met this year in
Liverpool during the 50th anniversary of Angelman Syndrome At this conference representatives came
from England Ireland Belgium Netherlands Germany Austria France Italy Portugal Japan Israel
Hungary Poland Finland and Switzerland
As professor Ype Elgersma (NL) said ldquoThese are very exciting times because we might actually have the
possibility to reverse a severe genetic diseaserdquo Therefore the need to get things going is stronger than ever
within the Alliance and the need for more funding is evident Because in the end every parent wants their
child to be as happy and healthy as possible
Everything we do we do for our Angels wwwangelmanallianceor g
For information about the Alliance the research and other questions you can contact Betty Willemsen
bettywillemsenninafoundationeu
Dr Harry Angelman
1915 ndash 1996
El Dr Harry Angelman fue un meacutedico Ingleacutes quien
identificoacute lo que hoy en diacutea se llama Siacutendrome de
Angelman
Nacioacute en Birkenhead Inglaterra Le fascinaba el idioma
y la cultura de Italia
El fue el primero quien observoacute treacutes nintildeos no
relacionados quienes demostraban siacutentomas similares ndash
atrasos severos intelectuales un modo de andar que era
espasmoacutedico y riacutegido ausencia del hablar
convulsiones y una disposicioacuten contento
Luego duranted unas vacaciones en Italia descubrioacute
una pintura llamada ldquoUn Nintildeo con una Marionetardquo
creado por el artista del Renascimiento Giovanni
Francesco Caroto en el museo Castelvecchio en
Verona La pintura le hizo pensar en los nintildeos que eran
sus pacientes y le condujo a publicar un artiacuteculo
profesional en el antildeo 1965 que describiacutea lo que el
llamaba ldquoNintildeos Marionetasrdquo En aquel momento la
importancia de su artiacuteculo no fue reconocido como algo
importante
No pasoacute nada mas hasta Charles A Williams y Jaime L
Frias del departamento de Pediacuteatra Divisiacuteon de
Geneacutetica de la Universidad de Florida Colegio de
Medicina de Gainesville Florida sometieron un
artiacuteculo a la Revista Americana de Geneacutetica Meacutedica
explicando estudios de seacuteis pacientes comparando sus
datos con los de informes previos ndash incluyendo atrasos
intelectuales severos el andar como un ldquomarionetardquo
anormalidades cranio-faciales y espisodios frecuentes
de risas De repente se notoacute que eso era mucho maacutes
comuacuten de lo que anteriormente se creiacutea Ellos
propusieron ponerle el nombre de Siacutendrome de
Angelman en honor del Dr Harry Angelman
La Historia del Siacutendrome de Angelman (Spanish Translation)
Angelman Today
Gareth Edwards (Directeur de Star Wars) lrsquoaffirme la Force est avec lrsquoAngelman Syndrome Alliance (ASA)
On dit souvent que les parents feraient tout pour leurs enfants et crsquoest ce qui se veacuterifie agrave lrsquooccasion drsquoune maladie rare appeleacutee le syndrome drsquoAngelman Animeacutees drsquoun amour infini pour leurs enfants des organisations parentales de 15 pays ont formeacute une alliance dans le but de faire avancer la recherche qui permettra agrave ces enfants de parler courir et vivre leur vie pleinement Comme lrsquoaffirmait dans son intervention Gareth Edwards soutien de lrsquoassociation de bienfaisance anglaise qui accueillait cette anneacutee la confeacuterence internationale agrave Liverpool laquo Les Anges vont plus loin et au-delagrave raquo
De reacutecentes deacutecouvertes dues par le Professeur Art Beaudet (USA) avec le soutien des laboratoires pharmaceutiques ISIS vont conduire agrave des essais cliniques Drsquoautres chercheurs soutenus par des socieacuteteacutes pharmaceutiques ont obtenu des reacutesultats prometteurs pour ameacuteliorer la qualiteacute de vie des enfants et des adultes atteints du syndrome drsquoAngelman
Surmontant les obstacles dus aux langues aux diffeacuterences culturelles et leacutegales les organisations parentales ont creacuteeacute lrsquoAlliance du Syndrome drsquoAngelman (ASA) visant agrave faire progresser la recherche et agrave mettre en commun les ressources et les financements Dans les deux premiegraveres anneacutees 550 000 euro ont eacuteteacute reacuteunis et drsquoautres organisations venues du monde entier souhaitent srsquoy associer Cette anneacutee les organisations de parents se sont rencontreacutees agrave Liverpool dans le cadre du 50egraveme anniversaire de lrsquoidentification du syndrome Eacutetaient repreacutesenteacutes lrsquoAngleterre lrsquoIrlande la Belgique les Pays Bas lrsquoAllemagne lrsquoAutriche la France lrsquoItalie le Portugal le Japon Israeumll la Hongrie la Pologne la Finlande et la Suisse
Comme le disait le Professeur Ype Elgersma (NL) laquo Nous vivons des temps prometteurs car nous sommes en mesure drsquoinverser une grave maladie geacuteneacutetique raquo Crsquoest pourquoi il est de plus en plus neacutecessaire de renforcer notre action et de trouver drsquoautres financements Parce qursquoil est clair que chaque parent souhaite que son enfant vive heureux et en bonne santeacute
Tout ce que nous faisons nous le faisons pour nos Anges wwwangelmanallianceorg
Pour toute information sur lrsquoAlliance la recherche et drsquoautres questions vous pouvez contacter Betty Willemsen bettywillemsenninafoundationeu
Angelman Today
God only gives us what He is willing to walk us through
-Joell Gingrich Ketcham
ldquo ldquo
ldquo
Adding youtube video
platform to Angelman Today
Video content will include bull Interviews
bull Product Reviews
bull Latest Research
bull How To videos
bull Parent tips and interviews
bull Much more
Email Lizzieangelmantodaycom if you
would like to participate
Announcements
We are expanding Angelman Today to include a new
platform of video media
To do this we will be making some changes that will
include the publishing schedule for the online digital
magazine Starting in January 2016 we will start
publishing Angelman Today quarterly 4 information-
packed editions a year
Subscriptions of the online magazine will remain
FREE
Subscribing to the YouTube channel is also FREE
We welcome all Angelman foundations parents
care takers physicians and researchers to
contribute Deadlines are
bull December 10
bull March 10
bull June 10
bull September 10
Show your support for Angelman Today and subscribe
WWWANGELMANTODAYCOM November December 2015
Toby B Kroger in Kentucky Scotty at Wegmans in NY
There are many challenges that come along with being
a caretaker of an individual with special needs
including a task that for many may be simple a trip
that we all must do regularly which is shop for
groceries
The best inventions are usually created from a persons
desire to satisfy a need or to solve a problem they
encounter in their own life One set of parents did just
that Drew Ann and David Long have three children
Caroline is their middle child she was diagnosed with
Rett syndrome The challenge came when Drew Ann
went grocery shopping with her kids She had a
Making Shopping A Little
Easier This Holiday Season helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
toddler and Caroline in her wheelchair The problem
presented itself as in the form of a question ldquoHow
do you push a wheelchair and a shopping cartrdquo
Drew Ann had the answer She was able to vision the
cart and sat in her car and sketched it out on paper
She knew she was not the first to have this dilemma
nor would she be the last
Carolinersquos Carts can now be found at some select
retailers You can visit wwwcarolinescartcom to
find a location near you
Parents we need your help We at Angelman Today
are calling for action There are not enough stores
with Carolinersquos carts Parents it is up to us We are
the ones that need them so we have to be the ones to
request them at our local retailers Some stores like
Target Shoprite Publix Lucky and Wegmans are
starting to have them available If they are not
currently at a store near you just ask the manager
You will be helping not only your family but the
many other families that may not yet even know this
helpful cart exists
WWWANGELMANTODAYCOM November December 2015
Thank you A big thanks to all of the contributors that help bring you Angelman Today
Angelman Today Supporters
If I Need Help ndash wwwifineedhelporg
All of the Angelman and
Associated
Foundations
across the globe
Additional Contributors
Kat Adams
Maria Cano Moraleda
Erin Bates
Angelman Today is a lifestyle guide to achieving better health for individuals with Angelman Syndrome and their families It is written with your needs in mind but is not a substitute for consulting with your physician or other health care providers The publisher and authors are not responsible for any adverse effects or consequences resulting from the use of the suggestions products or procedures that appear on this website or online magazine All matters regarding your health should be supervised by a licensed health care physician Copyright 2014 Angelman Today LLC All rights reserved worldwide
CONTRIBUTORS
Marilyn Kennedy
Assistant Editor Marilynangelmantodaycom
Sybille Kraft Bellamy
Parent Expert in Nutrition
And LGIT diet FacebookcomAngelmanSyndromeDiet
STAY CONNECTED ON THE GO
DOWNLOAD THE NEW ISSUU APP TODAY ON GOOGLE PLAY
AND NOW IN THE APP STORE
Dr Harry Angelman
1915 ndash 1996
Dr Harry Angelman was an English physician
who identified what is now known as Angelman
Syndrome
He first observed three children who were not
related but showed similar symptoms of severe
intellectual delay stiff jerky gait lack of speech
seizures motor disorders and happy demeanors
Although Dr Angelman was born in Birkenhead
England he was an enthusiast for the language
and country of Italy And it was while vacationing
in Italy he observed an oil painting called A Boy
with a Puppet by the renaissance artist Giovanni
Francesco Caroto at the Castelvecchio museum in
Verona Reminded of the children hersquod observed
Dr Angelman published a paper in 1965 that
described what he called ldquopuppet childrenrdquo At
this time his paper was not immediately
recognized as important
It wasnrsquot until 1982 when Charles A Williams
and Jaime L Frias of the department of Pediatrics
Division of Genetics University of Florida
College of Medicine Gainesville submitted a
paper to the American Journal of Medical
Genetics reporting studies of six patients and
comparing their data to those from previous
reports - severe developmental delay ldquopuppet-
likerdquo gait craniofacial abnormalities and frequent
episodes of laughter- that it became clear the
syndrome was more common than previously
thought They proposed the name of this disorder
be changed to Angelman Syndrome
The History of Angelman Syndrome
Angelman Today
Books Recommended by Parents
Connect with us on
Thanks for your support
Please Share Angelman Today
wwwangelmantodaycom
WWWANGELMANTODAYCOM November December 2015
New Book ldquoLife with an Angel
ldquoWhat is Angelman Syndromerdquo That is usually
the first question we ask the doctor as soon as our
child is diagnosed with this rare disease And
then come the follow-up questions What can we
do Is there a treatment What is their life
expectancy
As soon as we become aware of the fact that
there is no treatment or cure our whole life is
turned upside down Each individual family deals
with the situation the best way they can Some
choose denial However sooner or later they will
try to contact other families in the same situation
who will be able to understand to share their
own experience and offer support in bad times
and celebrate with us the good times
All Angel families would have loved to hear
about the syndrome from a more positive and
closer point of view than that offered by doctors
And so 25 families belonging to the Spanish
Angelman Syndrome Association decided to
write down their personal stories in the hope of
spreading the word on Angelman Syndrome and
especially with the determination to help those
who in the future will come face to face with this
diagnosis
We want them to know that they are not alone
and that there is a life and hope beyond the
syndrome It may be difficult at times but it will
bring moments of total happiness more than we
could have imagined
And most importantly the book is a tribute to
our sons and daughters it is their lives and their
stories we are sharing with the world a story
they arenrsquot able to explain with words
wwwangelman-asaorg
Click here to buy the digital edition
(ebook 3 euros)
Click here to buy the paper edition
(20 euros shipping included)
Order online
The English version will be published soon
WWWANGELMANTODAYCOM November December 2015
The Angel Wings Foundation is bringing you an Angelman
Today Exclusive Vacation Giveaway
Last year the Angel Wings Foundation hit
upon a novel idea How about giving
someone a vacation Someone who could
really use it hellipsomeone who deserves it
hellipsomeone who might actually need it to re-
set their lives Well we did just that and it
worked out better than we couldrsquove ever
imagined
So this year wersquore doing it again One
deserving Angelman family will win an all
expense paid vacation to a music and wine
event in Napa California called ldquoLive In The
Vinyardrdquo
We realize that this isnrsquot scientific research
or new breakthrough therapy techniques or
an awareness campaign All of those things
are certainly vital and crucial to our
collective journey as Angelman parents We
cheer them on and support them
wholeheartedly But we at the Angel Wings
Foundation want to wrap our arms around
the Angelman community and give hugs
wherever and whenever we can We know
how fatiguing constant caregiving can be
We also know how isolating it can be for the
Angel to only see the same people day in and
day out So this ldquoAngel Week Offrdquo is just as
much for the Angels as it is for the parents
We will send in a male and female caregiver
to the familyrsquos home to give the Angel a
week off as well Activities will be planned
every day that donrsquot include mom and dad
After all everybody needs a break from
mom and dad sometimes Besides mom and
dad will be getting a massage or golfing or
horseback riding or drinking wine and
listening to music somewhere in Northern
California
So herersquos what you do hellipwrite an essay (500
words or less) describing your Angelman
journey We all have one and they are all
deserving of a great vacation But we can only
do one at a time right now hellipsorry An all-star
panel of judges will read the entries and
narrow them down to a top 5 The they will re-
read them and ONE family will win the
vacation
The panel consists of people from Make-A-
Wish Best Buddies Special Olympics
Angelman Today and one board member from
the Angel Wings Foundation I donrsquot read
them I just get to call you and tell you yoursquove
won hellipI love that part
All entries must be in by Thanksgiving Day
2015 A winner will be chosen and announced
on Christmas Eve hellipwhat a great Christmas
gift Then we will start making arrangements
for the vacation that will take place in April of
2016 A family member or designated care
giver (in charge) must be present with our
caregivers So keep that part in mind Safety
first
Last yearrsquos winners Mary and Rory were so
moved by the experience they have asked if
they can donate to this yearrsquos winner I think
that speaks for itself They sent in a video to
encourage everyone to enter
Hopefully one day wersquoll be able to do this
many times a year But for this year we canrsquot
wait to read the entries and award some
amazing Angel family a break and a time they
will never forget
We love you all Now get to writing
Email they essay entry to
AngelsWeekOffangelmantodaycom
WWWANGELMANTODAYCOM November December 2015
WWWANGELMANTODAYCOM November December 2015
WOULD YOU LIKE TO CONTRIBUTE
We welcome all Angelman foundations parents care takers physicians and researchers
Email articles and pictures to Lizzieangelmantodaycom
Holiday Gift Guide
Radiance Floor Lamp Night Light Star Projector
Chewbeads Military Dog Tags
Krazy Gears Sensory Weighted Blanket
Senseez Vibrating Pillow Crazy Aaronrsquos Thinking Putty
By Kat Adams Melissa is 12 years old and has Angelman
syndrome UPD She loves to play games and
laugh at her big Brother Jacobs jokes she has a
wicked sense of humor
Melissa won the Child of courage award at an
event in her home town I was very proud that
her fellow citizens chose to recognize her daily
struggles and her massive achievements in this
way
Melissa experiences life in such a way that
every day is an adventure she brings so much
love and happiness into both mine and Jacobs
lives
We have set up a small Foundation in Melissas
name to help support research into a cure for
Angelman syndrome and have had many good
times with our fundraising events taking part
in things such as skydiving and even carrying
Melissa in a sedan chair for 5 miles
Life is never dull with a child like Melissa
Lots of tears along the way but much more
laughter
Angels in Action
Last year was such a success we are doing it again Enter a picture of your loved one
with Angelman Syndrome Get your friends and family voting and they could be on
the January cover of Angelman Today Watch our Facebook page for details
2 16
2014 Cover
2015 Cover
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
The Meerdo Family
Kathryn Matt and Stetson from Chip at AS event
Brian and Drew Fitzgerald annual Blarney CupYaron Werber
Because of you AS families benefit
THANK YOU to our phenomenal supporters this past yearHoly Cow Our AS friends and families have truly impressed our socks off this year Your creativity and dedication is shattering past records and touching lives deeply We at the ASF are humbled and honored to have had independent fundraisers raise more than $100000 for the AS community to date
Check out what just a few of our families have done in 2015
Family Fun Day - Michael Drzewiecki and company
Berto and Minnie with their daughter Pam
Annual Tractor Cruise - Horton Kansas
Because of you AS families benefit
THANK YOU to every individual and organization that played a role in these fundraisers either by spearheading attending or donating to these events
Blarney Cup Paddle Tournament The Fitzgeraldrsquos in Ohio $25450
Meerdo Annual Golf Tournament The Meerdorsquos in Utah $19980
Chip Away at AS Golf Tournament The Elyrsquos in Georgia $11683
Tractor Cruise The Olsenrsquos in Kansas $5350
Cure for the Angels Family Day Angelique Tuthill in New York $4747
Discover Day Camp Christina Polleto in New York $4309
Yaron Werber of Ovid Therapeutics raised $3953 for ASF at the Brooklyn Rock n Roll 12 Marathon
Hauser Junior High School Fundraiser in Westchester New York $3535
Custom Harley Davidson Bike Show Noel Perez and Berto Castellanos in California $3360
Pardi Gras Promotion and Sales Proceeds $2500
Tierrarsquos Event $2435
Family Fun Day Michael Drzewiecki in New York $2338
The Hope Classic at Lower Merion High School in Medinah NY $2342
Run Like A Mother 5k Tiffany Cruikshank in Hinsdale Illinois $1880
Oakland Arsquos Fundraiser in California $1345
7th Street Sportsmen Club Fundraiser in Pennsylvania $1000
THANK YOU to all of the fundraisers who have brought in more than $100000 of donations in 2015 We are very excited at the possibilities and creativity our families will bring in 2016
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Summit4Angelman
Father to young boy with AS climbs Mt Kilimanjaro to raise awareness of ASFrom Kyle himself
Irsquom going to take 8 days to climb up the worldrsquos tallest freestanding mountain to raise awareness for Angelman syndrome and Irsquove realized during my training that I donrsquot think I can do it alone Of course Irsquom going up with a great group looking forward to helping the cause in any way they can but Irsquove found such strength in keeping focused on why Irsquom doing this and every time I ldquopicturerdquo my son Madden it keeps me going when I desperately want to quit or cut corners in training If I keep in mind how my son never quits and overcomes his challenges with a smile I realize this mountain isnrsquot quite as tall I as first thought The point ishellipwithout Madden this climb seems a lot more difficult Which got me thinking what if I have an army of Angels with me every step of the climb Irsquom asking you to send me a picture of your Angel so I can take them to the top of Kilimanjaro with me Each photo and story you send me will provide the strength I need to keep going when the air is thin the weather is cold and my head is pounding I will do everything in my power to get to the top with them My chances will be far better with each person I take up with me If I make it to the Summit I promise they will see the view with me at 19341 feet
Visit Kylersquos personal blog at wwwsummit4angelmancom to find out more about Kylersquos journey
How can you helpbull Share your personal Summit story of accomplishment
on Facebook and Twitter and include the hashtag Summit4Angelman
bull Introduce Angelman syndrome to new peoplehellipKylersquos goal is to raise awareness of AS and he wants to reach 19341mdashthatrsquos one new person for every foot that Mt Kilimanjaro is tall
bull Share a photo of your loved one with AS (send to kyrooneyoutlookcom) for Kyle to take to the top of Mt Kilimanjaro
Looks Whatrsquos Shouted From the Mountaintop Angelman Syndrome Awareness
ASF Communication Training Series
Having challenges with helping your loved one with AS better communicate We have the resource for you In collaboration with several AS communication experts the ASF has created a FREE communication resource that you can access AT ANY TIME the ASF Communication Training Series This Series takes all of the hours of great communication workshops and breaks them down into smaller digestible parts so that you and your individual with AS can reach herhis greatest communication success at any age Using web-based teaching the Series is designed to be sequential and you can join at any time and proceed through the training at your childrsquos pace of learning Click here for more and to access the schedule past webinar recordings and handouts
Meet the experts
ERIN SHELDON M EDErin earned her Masters of Education studying the learning characteristics of students with AS Erin works as an assistive technology consultant with a focus on supporting students with complex learning needs to access the general curriculum in inclusive classrooms She founded the Angelman Literacy
Project an initiative to support families and school teams to foster emergent literacy development in students with AS She presents professional development workshops and webinars across North America and Europe including at conferences such as Closing the Gap and ATIA and has authored manuals book chapters and journal articles
DR CAROLINE MUSSELWHITE CCC-SLPDr Musselwhite is an assistive technology specialist with more than 35 years of experience working with children and adolescents with significant disabilities in a variety of settings including Head Start developmental day programs homes and the public schools Dr
Musselwhite has written a number of textbooks and ldquohow-tordquo books on a range of topics and has also authored many books and software programs for youth with disabilities She has presented thousands of workshops throughout North and South America Australia Europe and Africa and is a founding member and Fellow of the International Society for Augmentative and Alternative Communication
MAUREEN NEVERS MS CCC-SLP LICENSED SPEECH-LANGUAGE PATHOLOGIST AUGMENTATIVE COMMUNICATION SPECIALISTMaureen earned a BS in Communication Disorders from the University of Massachusetts at Amherst in 1991 then earned a MS in Speech-Language
Pathology from the University of Vermont in 1993 Her graduate work included participation in a comprehensive training program in AAC She worked for Easter Seals in Massachusetts for eleven years before joining the Center on Disability and Community Inclusion at the University of Vermont eleven years ago She currently works as an Augmentative Communication Specialist with the Vermont I-Team where she is part of an interdisciplinary team that consults with school teams across the state to support individuals with complex communication needs
Communication training you can understand and use
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
MARY-LOUISE BERTRAMMary-Louise Bertram is a qualified Early Childhood Teacher from Perth Western Australia with special qualifications and training in the areas of communication sensory processing and literacy supports for children with complex disabilities Mary-Louise became involved with the AS community in 2007 while
teaching a class of six children four of whom had AS (all Del +) Since then Mary-Louise has worked with people with AS of all ages across Western Australia in the first statewide comprehensive AS-specific communication intervention of its kind She has supported families across the globe to advocate for their childrsquos right to high-quality communication and education intervention Mary-Louise currently works in private practice supporting individuals with complex disabilities (and their families) with communication and literacy
Families are also encouraged to support each other and share tips via the Seriesrsquo private ASF Communication Training Series Facebook group
Twenty years ago we never would have imagined that so many generous people like you would open their hearts to help those affected by AS Your generosity eases the financial and emotional burden on families by supporting our family resource program and has helped our researchers make significant breakthroughs in treatments and potential cures for AS Without you there would be no us We are forever grateful for your support
Click here to make a contribution to the ASFrsquos end-of-year appeal All donations are 100 tax deductible per IRS regulations
Itrsquos ALL because of YOU
WWWANGELMANTODAYCOM November December 2015
By Cass Gamero
My sons name is Alexander and he was
recently diagnosed in July 2015 Hes only
18 months old and is loved by all Anyone
who meets him cant help but be
memorized by his long eye lashes amp
beaming smile When you see him you
cant help but smile My son also has some
vision problems but is getting better He
loves his toy keys and could recognize his
bottle from anywhere Hes lovable
friendly joyful and bright
Angels in Action Celebrating the Abilities of our Angels
Gareth Edwards (Star Wars Director) acknowledges
The force is strong in the Angelman Alliance
It is often said that parents will do anything for their children A rare
disease called Angelman Syndrome is proving testimony to this fact
Driven by an unstoppable love for their children parent organisations
from 15 countries have formed an alliance to work together to progress
research that may help their children to speak run and live life to their
full potential As Gareth Edwards patron of the UK Charity that hosted
this yearsrsquo conference in Liverpool England said during his speech at
the conference ldquoAngels go further and beyondrdquo
With the support of ISIS pharmaceuticals recent findings by professor Art Beaudet (USA) are expected to
progress to clinical trials Results from other researchers in collaboration with pharmaceutical companies
also have promising results to improve the quality of life for children amp adults with Angelman Syndrome
Initially having to overcome language barriers cultural differences and different legal systems the parent
organisations created an international Alliance on Angelman Syndrome (ASA) to drive research forward
pooling resources and funds In the first two years over half a million eurorsquos (550000-) was raised with
more parent organisations worldwide continuing to join The parent organisations met this year in
Liverpool during the 50th anniversary of Angelman Syndrome At this conference representatives came
from England Ireland Belgium Netherlands Germany Austria France Italy Portugal Japan Israel
Hungary Poland Finland and Switzerland
As professor Ype Elgersma (NL) said ldquoThese are very exciting times because we might actually have the
possibility to reverse a severe genetic diseaserdquo Therefore the need to get things going is stronger than ever
within the Alliance and the need for more funding is evident Because in the end every parent wants their
child to be as happy and healthy as possible
Everything we do we do for our Angels wwwangelmanallianceor g
For information about the Alliance the research and other questions you can contact Betty Willemsen
bettywillemsenninafoundationeu
Dr Harry Angelman
1915 ndash 1996
El Dr Harry Angelman fue un meacutedico Ingleacutes quien
identificoacute lo que hoy en diacutea se llama Siacutendrome de
Angelman
Nacioacute en Birkenhead Inglaterra Le fascinaba el idioma
y la cultura de Italia
El fue el primero quien observoacute treacutes nintildeos no
relacionados quienes demostraban siacutentomas similares ndash
atrasos severos intelectuales un modo de andar que era
espasmoacutedico y riacutegido ausencia del hablar
convulsiones y una disposicioacuten contento
Luego duranted unas vacaciones en Italia descubrioacute
una pintura llamada ldquoUn Nintildeo con una Marionetardquo
creado por el artista del Renascimiento Giovanni
Francesco Caroto en el museo Castelvecchio en
Verona La pintura le hizo pensar en los nintildeos que eran
sus pacientes y le condujo a publicar un artiacuteculo
profesional en el antildeo 1965 que describiacutea lo que el
llamaba ldquoNintildeos Marionetasrdquo En aquel momento la
importancia de su artiacuteculo no fue reconocido como algo
importante
No pasoacute nada mas hasta Charles A Williams y Jaime L
Frias del departamento de Pediacuteatra Divisiacuteon de
Geneacutetica de la Universidad de Florida Colegio de
Medicina de Gainesville Florida sometieron un
artiacuteculo a la Revista Americana de Geneacutetica Meacutedica
explicando estudios de seacuteis pacientes comparando sus
datos con los de informes previos ndash incluyendo atrasos
intelectuales severos el andar como un ldquomarionetardquo
anormalidades cranio-faciales y espisodios frecuentes
de risas De repente se notoacute que eso era mucho maacutes
comuacuten de lo que anteriormente se creiacutea Ellos
propusieron ponerle el nombre de Siacutendrome de
Angelman en honor del Dr Harry Angelman
La Historia del Siacutendrome de Angelman (Spanish Translation)
Angelman Today
Gareth Edwards (Directeur de Star Wars) lrsquoaffirme la Force est avec lrsquoAngelman Syndrome Alliance (ASA)
On dit souvent que les parents feraient tout pour leurs enfants et crsquoest ce qui se veacuterifie agrave lrsquooccasion drsquoune maladie rare appeleacutee le syndrome drsquoAngelman Animeacutees drsquoun amour infini pour leurs enfants des organisations parentales de 15 pays ont formeacute une alliance dans le but de faire avancer la recherche qui permettra agrave ces enfants de parler courir et vivre leur vie pleinement Comme lrsquoaffirmait dans son intervention Gareth Edwards soutien de lrsquoassociation de bienfaisance anglaise qui accueillait cette anneacutee la confeacuterence internationale agrave Liverpool laquo Les Anges vont plus loin et au-delagrave raquo
De reacutecentes deacutecouvertes dues par le Professeur Art Beaudet (USA) avec le soutien des laboratoires pharmaceutiques ISIS vont conduire agrave des essais cliniques Drsquoautres chercheurs soutenus par des socieacuteteacutes pharmaceutiques ont obtenu des reacutesultats prometteurs pour ameacuteliorer la qualiteacute de vie des enfants et des adultes atteints du syndrome drsquoAngelman
Surmontant les obstacles dus aux langues aux diffeacuterences culturelles et leacutegales les organisations parentales ont creacuteeacute lrsquoAlliance du Syndrome drsquoAngelman (ASA) visant agrave faire progresser la recherche et agrave mettre en commun les ressources et les financements Dans les deux premiegraveres anneacutees 550 000 euro ont eacuteteacute reacuteunis et drsquoautres organisations venues du monde entier souhaitent srsquoy associer Cette anneacutee les organisations de parents se sont rencontreacutees agrave Liverpool dans le cadre du 50egraveme anniversaire de lrsquoidentification du syndrome Eacutetaient repreacutesenteacutes lrsquoAngleterre lrsquoIrlande la Belgique les Pays Bas lrsquoAllemagne lrsquoAutriche la France lrsquoItalie le Portugal le Japon Israeumll la Hongrie la Pologne la Finlande et la Suisse
Comme le disait le Professeur Ype Elgersma (NL) laquo Nous vivons des temps prometteurs car nous sommes en mesure drsquoinverser une grave maladie geacuteneacutetique raquo Crsquoest pourquoi il est de plus en plus neacutecessaire de renforcer notre action et de trouver drsquoautres financements Parce qursquoil est clair que chaque parent souhaite que son enfant vive heureux et en bonne santeacute
Tout ce que nous faisons nous le faisons pour nos Anges wwwangelmanallianceorg
Pour toute information sur lrsquoAlliance la recherche et drsquoautres questions vous pouvez contacter Betty Willemsen bettywillemsenninafoundationeu
Angelman Today
God only gives us what He is willing to walk us through
-Joell Gingrich Ketcham
ldquo ldquo
ldquo
Adding youtube video
platform to Angelman Today
Video content will include bull Interviews
bull Product Reviews
bull Latest Research
bull How To videos
bull Parent tips and interviews
bull Much more
Email Lizzieangelmantodaycom if you
would like to participate
Announcements
We are expanding Angelman Today to include a new
platform of video media
To do this we will be making some changes that will
include the publishing schedule for the online digital
magazine Starting in January 2016 we will start
publishing Angelman Today quarterly 4 information-
packed editions a year
Subscriptions of the online magazine will remain
FREE
Subscribing to the YouTube channel is also FREE
We welcome all Angelman foundations parents
care takers physicians and researchers to
contribute Deadlines are
bull December 10
bull March 10
bull June 10
bull September 10
Show your support for Angelman Today and subscribe
WWWANGELMANTODAYCOM November December 2015
Toby B Kroger in Kentucky Scotty at Wegmans in NY
There are many challenges that come along with being
a caretaker of an individual with special needs
including a task that for many may be simple a trip
that we all must do regularly which is shop for
groceries
The best inventions are usually created from a persons
desire to satisfy a need or to solve a problem they
encounter in their own life One set of parents did just
that Drew Ann and David Long have three children
Caroline is their middle child she was diagnosed with
Rett syndrome The challenge came when Drew Ann
went grocery shopping with her kids She had a
Making Shopping A Little
Easier This Holiday Season helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
toddler and Caroline in her wheelchair The problem
presented itself as in the form of a question ldquoHow
do you push a wheelchair and a shopping cartrdquo
Drew Ann had the answer She was able to vision the
cart and sat in her car and sketched it out on paper
She knew she was not the first to have this dilemma
nor would she be the last
Carolinersquos Carts can now be found at some select
retailers You can visit wwwcarolinescartcom to
find a location near you
Parents we need your help We at Angelman Today
are calling for action There are not enough stores
with Carolinersquos carts Parents it is up to us We are
the ones that need them so we have to be the ones to
request them at our local retailers Some stores like
Target Shoprite Publix Lucky and Wegmans are
starting to have them available If they are not
currently at a store near you just ask the manager
You will be helping not only your family but the
many other families that may not yet even know this
helpful cart exists
WWWANGELMANTODAYCOM November December 2015
Thank you A big thanks to all of the contributors that help bring you Angelman Today
Angelman Today Supporters
If I Need Help ndash wwwifineedhelporg
All of the Angelman and
Associated
Foundations
across the globe
Additional Contributors
Kat Adams
Maria Cano Moraleda
Erin Bates
Angelman Today is a lifestyle guide to achieving better health for individuals with Angelman Syndrome and their families It is written with your needs in mind but is not a substitute for consulting with your physician or other health care providers The publisher and authors are not responsible for any adverse effects or consequences resulting from the use of the suggestions products or procedures that appear on this website or online magazine All matters regarding your health should be supervised by a licensed health care physician Copyright 2014 Angelman Today LLC All rights reserved worldwide
CONTRIBUTORS
Marilyn Kennedy
Assistant Editor Marilynangelmantodaycom
Sybille Kraft Bellamy
Parent Expert in Nutrition
And LGIT diet FacebookcomAngelmanSyndromeDiet
STAY CONNECTED ON THE GO
DOWNLOAD THE NEW ISSUU APP TODAY ON GOOGLE PLAY
AND NOW IN THE APP STORE
Dr Harry Angelman
1915 ndash 1996
Dr Harry Angelman was an English physician
who identified what is now known as Angelman
Syndrome
He first observed three children who were not
related but showed similar symptoms of severe
intellectual delay stiff jerky gait lack of speech
seizures motor disorders and happy demeanors
Although Dr Angelman was born in Birkenhead
England he was an enthusiast for the language
and country of Italy And it was while vacationing
in Italy he observed an oil painting called A Boy
with a Puppet by the renaissance artist Giovanni
Francesco Caroto at the Castelvecchio museum in
Verona Reminded of the children hersquod observed
Dr Angelman published a paper in 1965 that
described what he called ldquopuppet childrenrdquo At
this time his paper was not immediately
recognized as important
It wasnrsquot until 1982 when Charles A Williams
and Jaime L Frias of the department of Pediatrics
Division of Genetics University of Florida
College of Medicine Gainesville submitted a
paper to the American Journal of Medical
Genetics reporting studies of six patients and
comparing their data to those from previous
reports - severe developmental delay ldquopuppet-
likerdquo gait craniofacial abnormalities and frequent
episodes of laughter- that it became clear the
syndrome was more common than previously
thought They proposed the name of this disorder
be changed to Angelman Syndrome
The History of Angelman Syndrome
Angelman Today
Books Recommended by Parents
Connect with us on
Thanks for your support
Please Share Angelman Today
wwwangelmantodaycom
WWWANGELMANTODAYCOM November December 2015
The Angel Wings Foundation is bringing you an Angelman
Today Exclusive Vacation Giveaway
Last year the Angel Wings Foundation hit
upon a novel idea How about giving
someone a vacation Someone who could
really use it hellipsomeone who deserves it
hellipsomeone who might actually need it to re-
set their lives Well we did just that and it
worked out better than we couldrsquove ever
imagined
So this year wersquore doing it again One
deserving Angelman family will win an all
expense paid vacation to a music and wine
event in Napa California called ldquoLive In The
Vinyardrdquo
We realize that this isnrsquot scientific research
or new breakthrough therapy techniques or
an awareness campaign All of those things
are certainly vital and crucial to our
collective journey as Angelman parents We
cheer them on and support them
wholeheartedly But we at the Angel Wings
Foundation want to wrap our arms around
the Angelman community and give hugs
wherever and whenever we can We know
how fatiguing constant caregiving can be
We also know how isolating it can be for the
Angel to only see the same people day in and
day out So this ldquoAngel Week Offrdquo is just as
much for the Angels as it is for the parents
We will send in a male and female caregiver
to the familyrsquos home to give the Angel a
week off as well Activities will be planned
every day that donrsquot include mom and dad
After all everybody needs a break from
mom and dad sometimes Besides mom and
dad will be getting a massage or golfing or
horseback riding or drinking wine and
listening to music somewhere in Northern
California
So herersquos what you do hellipwrite an essay (500
words or less) describing your Angelman
journey We all have one and they are all
deserving of a great vacation But we can only
do one at a time right now hellipsorry An all-star
panel of judges will read the entries and
narrow them down to a top 5 The they will re-
read them and ONE family will win the
vacation
The panel consists of people from Make-A-
Wish Best Buddies Special Olympics
Angelman Today and one board member from
the Angel Wings Foundation I donrsquot read
them I just get to call you and tell you yoursquove
won hellipI love that part
All entries must be in by Thanksgiving Day
2015 A winner will be chosen and announced
on Christmas Eve hellipwhat a great Christmas
gift Then we will start making arrangements
for the vacation that will take place in April of
2016 A family member or designated care
giver (in charge) must be present with our
caregivers So keep that part in mind Safety
first
Last yearrsquos winners Mary and Rory were so
moved by the experience they have asked if
they can donate to this yearrsquos winner I think
that speaks for itself They sent in a video to
encourage everyone to enter
Hopefully one day wersquoll be able to do this
many times a year But for this year we canrsquot
wait to read the entries and award some
amazing Angel family a break and a time they
will never forget
We love you all Now get to writing
Email they essay entry to
AngelsWeekOffangelmantodaycom
WWWANGELMANTODAYCOM November December 2015
WWWANGELMANTODAYCOM November December 2015
WOULD YOU LIKE TO CONTRIBUTE
We welcome all Angelman foundations parents care takers physicians and researchers
Email articles and pictures to Lizzieangelmantodaycom
Holiday Gift Guide
Radiance Floor Lamp Night Light Star Projector
Chewbeads Military Dog Tags
Krazy Gears Sensory Weighted Blanket
Senseez Vibrating Pillow Crazy Aaronrsquos Thinking Putty
By Kat Adams Melissa is 12 years old and has Angelman
syndrome UPD She loves to play games and
laugh at her big Brother Jacobs jokes she has a
wicked sense of humor
Melissa won the Child of courage award at an
event in her home town I was very proud that
her fellow citizens chose to recognize her daily
struggles and her massive achievements in this
way
Melissa experiences life in such a way that
every day is an adventure she brings so much
love and happiness into both mine and Jacobs
lives
We have set up a small Foundation in Melissas
name to help support research into a cure for
Angelman syndrome and have had many good
times with our fundraising events taking part
in things such as skydiving and even carrying
Melissa in a sedan chair for 5 miles
Life is never dull with a child like Melissa
Lots of tears along the way but much more
laughter
Angels in Action
Last year was such a success we are doing it again Enter a picture of your loved one
with Angelman Syndrome Get your friends and family voting and they could be on
the January cover of Angelman Today Watch our Facebook page for details
2 16
2014 Cover
2015 Cover
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
The Meerdo Family
Kathryn Matt and Stetson from Chip at AS event
Brian and Drew Fitzgerald annual Blarney CupYaron Werber
Because of you AS families benefit
THANK YOU to our phenomenal supporters this past yearHoly Cow Our AS friends and families have truly impressed our socks off this year Your creativity and dedication is shattering past records and touching lives deeply We at the ASF are humbled and honored to have had independent fundraisers raise more than $100000 for the AS community to date
Check out what just a few of our families have done in 2015
Family Fun Day - Michael Drzewiecki and company
Berto and Minnie with their daughter Pam
Annual Tractor Cruise - Horton Kansas
Because of you AS families benefit
THANK YOU to every individual and organization that played a role in these fundraisers either by spearheading attending or donating to these events
Blarney Cup Paddle Tournament The Fitzgeraldrsquos in Ohio $25450
Meerdo Annual Golf Tournament The Meerdorsquos in Utah $19980
Chip Away at AS Golf Tournament The Elyrsquos in Georgia $11683
Tractor Cruise The Olsenrsquos in Kansas $5350
Cure for the Angels Family Day Angelique Tuthill in New York $4747
Discover Day Camp Christina Polleto in New York $4309
Yaron Werber of Ovid Therapeutics raised $3953 for ASF at the Brooklyn Rock n Roll 12 Marathon
Hauser Junior High School Fundraiser in Westchester New York $3535
Custom Harley Davidson Bike Show Noel Perez and Berto Castellanos in California $3360
Pardi Gras Promotion and Sales Proceeds $2500
Tierrarsquos Event $2435
Family Fun Day Michael Drzewiecki in New York $2338
The Hope Classic at Lower Merion High School in Medinah NY $2342
Run Like A Mother 5k Tiffany Cruikshank in Hinsdale Illinois $1880
Oakland Arsquos Fundraiser in California $1345
7th Street Sportsmen Club Fundraiser in Pennsylvania $1000
THANK YOU to all of the fundraisers who have brought in more than $100000 of donations in 2015 We are very excited at the possibilities and creativity our families will bring in 2016
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Summit4Angelman
Father to young boy with AS climbs Mt Kilimanjaro to raise awareness of ASFrom Kyle himself
Irsquom going to take 8 days to climb up the worldrsquos tallest freestanding mountain to raise awareness for Angelman syndrome and Irsquove realized during my training that I donrsquot think I can do it alone Of course Irsquom going up with a great group looking forward to helping the cause in any way they can but Irsquove found such strength in keeping focused on why Irsquom doing this and every time I ldquopicturerdquo my son Madden it keeps me going when I desperately want to quit or cut corners in training If I keep in mind how my son never quits and overcomes his challenges with a smile I realize this mountain isnrsquot quite as tall I as first thought The point ishellipwithout Madden this climb seems a lot more difficult Which got me thinking what if I have an army of Angels with me every step of the climb Irsquom asking you to send me a picture of your Angel so I can take them to the top of Kilimanjaro with me Each photo and story you send me will provide the strength I need to keep going when the air is thin the weather is cold and my head is pounding I will do everything in my power to get to the top with them My chances will be far better with each person I take up with me If I make it to the Summit I promise they will see the view with me at 19341 feet
Visit Kylersquos personal blog at wwwsummit4angelmancom to find out more about Kylersquos journey
How can you helpbull Share your personal Summit story of accomplishment
on Facebook and Twitter and include the hashtag Summit4Angelman
bull Introduce Angelman syndrome to new peoplehellipKylersquos goal is to raise awareness of AS and he wants to reach 19341mdashthatrsquos one new person for every foot that Mt Kilimanjaro is tall
bull Share a photo of your loved one with AS (send to kyrooneyoutlookcom) for Kyle to take to the top of Mt Kilimanjaro
Looks Whatrsquos Shouted From the Mountaintop Angelman Syndrome Awareness
ASF Communication Training Series
Having challenges with helping your loved one with AS better communicate We have the resource for you In collaboration with several AS communication experts the ASF has created a FREE communication resource that you can access AT ANY TIME the ASF Communication Training Series This Series takes all of the hours of great communication workshops and breaks them down into smaller digestible parts so that you and your individual with AS can reach herhis greatest communication success at any age Using web-based teaching the Series is designed to be sequential and you can join at any time and proceed through the training at your childrsquos pace of learning Click here for more and to access the schedule past webinar recordings and handouts
Meet the experts
ERIN SHELDON M EDErin earned her Masters of Education studying the learning characteristics of students with AS Erin works as an assistive technology consultant with a focus on supporting students with complex learning needs to access the general curriculum in inclusive classrooms She founded the Angelman Literacy
Project an initiative to support families and school teams to foster emergent literacy development in students with AS She presents professional development workshops and webinars across North America and Europe including at conferences such as Closing the Gap and ATIA and has authored manuals book chapters and journal articles
DR CAROLINE MUSSELWHITE CCC-SLPDr Musselwhite is an assistive technology specialist with more than 35 years of experience working with children and adolescents with significant disabilities in a variety of settings including Head Start developmental day programs homes and the public schools Dr
Musselwhite has written a number of textbooks and ldquohow-tordquo books on a range of topics and has also authored many books and software programs for youth with disabilities She has presented thousands of workshops throughout North and South America Australia Europe and Africa and is a founding member and Fellow of the International Society for Augmentative and Alternative Communication
MAUREEN NEVERS MS CCC-SLP LICENSED SPEECH-LANGUAGE PATHOLOGIST AUGMENTATIVE COMMUNICATION SPECIALISTMaureen earned a BS in Communication Disorders from the University of Massachusetts at Amherst in 1991 then earned a MS in Speech-Language
Pathology from the University of Vermont in 1993 Her graduate work included participation in a comprehensive training program in AAC She worked for Easter Seals in Massachusetts for eleven years before joining the Center on Disability and Community Inclusion at the University of Vermont eleven years ago She currently works as an Augmentative Communication Specialist with the Vermont I-Team where she is part of an interdisciplinary team that consults with school teams across the state to support individuals with complex communication needs
Communication training you can understand and use
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
MARY-LOUISE BERTRAMMary-Louise Bertram is a qualified Early Childhood Teacher from Perth Western Australia with special qualifications and training in the areas of communication sensory processing and literacy supports for children with complex disabilities Mary-Louise became involved with the AS community in 2007 while
teaching a class of six children four of whom had AS (all Del +) Since then Mary-Louise has worked with people with AS of all ages across Western Australia in the first statewide comprehensive AS-specific communication intervention of its kind She has supported families across the globe to advocate for their childrsquos right to high-quality communication and education intervention Mary-Louise currently works in private practice supporting individuals with complex disabilities (and their families) with communication and literacy
Families are also encouraged to support each other and share tips via the Seriesrsquo private ASF Communication Training Series Facebook group
Twenty years ago we never would have imagined that so many generous people like you would open their hearts to help those affected by AS Your generosity eases the financial and emotional burden on families by supporting our family resource program and has helped our researchers make significant breakthroughs in treatments and potential cures for AS Without you there would be no us We are forever grateful for your support
Click here to make a contribution to the ASFrsquos end-of-year appeal All donations are 100 tax deductible per IRS regulations
Itrsquos ALL because of YOU
WWWANGELMANTODAYCOM November December 2015
By Cass Gamero
My sons name is Alexander and he was
recently diagnosed in July 2015 Hes only
18 months old and is loved by all Anyone
who meets him cant help but be
memorized by his long eye lashes amp
beaming smile When you see him you
cant help but smile My son also has some
vision problems but is getting better He
loves his toy keys and could recognize his
bottle from anywhere Hes lovable
friendly joyful and bright
Angels in Action Celebrating the Abilities of our Angels
Gareth Edwards (Star Wars Director) acknowledges
The force is strong in the Angelman Alliance
It is often said that parents will do anything for their children A rare
disease called Angelman Syndrome is proving testimony to this fact
Driven by an unstoppable love for their children parent organisations
from 15 countries have formed an alliance to work together to progress
research that may help their children to speak run and live life to their
full potential As Gareth Edwards patron of the UK Charity that hosted
this yearsrsquo conference in Liverpool England said during his speech at
the conference ldquoAngels go further and beyondrdquo
With the support of ISIS pharmaceuticals recent findings by professor Art Beaudet (USA) are expected to
progress to clinical trials Results from other researchers in collaboration with pharmaceutical companies
also have promising results to improve the quality of life for children amp adults with Angelman Syndrome
Initially having to overcome language barriers cultural differences and different legal systems the parent
organisations created an international Alliance on Angelman Syndrome (ASA) to drive research forward
pooling resources and funds In the first two years over half a million eurorsquos (550000-) was raised with
more parent organisations worldwide continuing to join The parent organisations met this year in
Liverpool during the 50th anniversary of Angelman Syndrome At this conference representatives came
from England Ireland Belgium Netherlands Germany Austria France Italy Portugal Japan Israel
Hungary Poland Finland and Switzerland
As professor Ype Elgersma (NL) said ldquoThese are very exciting times because we might actually have the
possibility to reverse a severe genetic diseaserdquo Therefore the need to get things going is stronger than ever
within the Alliance and the need for more funding is evident Because in the end every parent wants their
child to be as happy and healthy as possible
Everything we do we do for our Angels wwwangelmanallianceor g
For information about the Alliance the research and other questions you can contact Betty Willemsen
bettywillemsenninafoundationeu
Dr Harry Angelman
1915 ndash 1996
El Dr Harry Angelman fue un meacutedico Ingleacutes quien
identificoacute lo que hoy en diacutea se llama Siacutendrome de
Angelman
Nacioacute en Birkenhead Inglaterra Le fascinaba el idioma
y la cultura de Italia
El fue el primero quien observoacute treacutes nintildeos no
relacionados quienes demostraban siacutentomas similares ndash
atrasos severos intelectuales un modo de andar que era
espasmoacutedico y riacutegido ausencia del hablar
convulsiones y una disposicioacuten contento
Luego duranted unas vacaciones en Italia descubrioacute
una pintura llamada ldquoUn Nintildeo con una Marionetardquo
creado por el artista del Renascimiento Giovanni
Francesco Caroto en el museo Castelvecchio en
Verona La pintura le hizo pensar en los nintildeos que eran
sus pacientes y le condujo a publicar un artiacuteculo
profesional en el antildeo 1965 que describiacutea lo que el
llamaba ldquoNintildeos Marionetasrdquo En aquel momento la
importancia de su artiacuteculo no fue reconocido como algo
importante
No pasoacute nada mas hasta Charles A Williams y Jaime L
Frias del departamento de Pediacuteatra Divisiacuteon de
Geneacutetica de la Universidad de Florida Colegio de
Medicina de Gainesville Florida sometieron un
artiacuteculo a la Revista Americana de Geneacutetica Meacutedica
explicando estudios de seacuteis pacientes comparando sus
datos con los de informes previos ndash incluyendo atrasos
intelectuales severos el andar como un ldquomarionetardquo
anormalidades cranio-faciales y espisodios frecuentes
de risas De repente se notoacute que eso era mucho maacutes
comuacuten de lo que anteriormente se creiacutea Ellos
propusieron ponerle el nombre de Siacutendrome de
Angelman en honor del Dr Harry Angelman
La Historia del Siacutendrome de Angelman (Spanish Translation)
Angelman Today
Gareth Edwards (Directeur de Star Wars) lrsquoaffirme la Force est avec lrsquoAngelman Syndrome Alliance (ASA)
On dit souvent que les parents feraient tout pour leurs enfants et crsquoest ce qui se veacuterifie agrave lrsquooccasion drsquoune maladie rare appeleacutee le syndrome drsquoAngelman Animeacutees drsquoun amour infini pour leurs enfants des organisations parentales de 15 pays ont formeacute une alliance dans le but de faire avancer la recherche qui permettra agrave ces enfants de parler courir et vivre leur vie pleinement Comme lrsquoaffirmait dans son intervention Gareth Edwards soutien de lrsquoassociation de bienfaisance anglaise qui accueillait cette anneacutee la confeacuterence internationale agrave Liverpool laquo Les Anges vont plus loin et au-delagrave raquo
De reacutecentes deacutecouvertes dues par le Professeur Art Beaudet (USA) avec le soutien des laboratoires pharmaceutiques ISIS vont conduire agrave des essais cliniques Drsquoautres chercheurs soutenus par des socieacuteteacutes pharmaceutiques ont obtenu des reacutesultats prometteurs pour ameacuteliorer la qualiteacute de vie des enfants et des adultes atteints du syndrome drsquoAngelman
Surmontant les obstacles dus aux langues aux diffeacuterences culturelles et leacutegales les organisations parentales ont creacuteeacute lrsquoAlliance du Syndrome drsquoAngelman (ASA) visant agrave faire progresser la recherche et agrave mettre en commun les ressources et les financements Dans les deux premiegraveres anneacutees 550 000 euro ont eacuteteacute reacuteunis et drsquoautres organisations venues du monde entier souhaitent srsquoy associer Cette anneacutee les organisations de parents se sont rencontreacutees agrave Liverpool dans le cadre du 50egraveme anniversaire de lrsquoidentification du syndrome Eacutetaient repreacutesenteacutes lrsquoAngleterre lrsquoIrlande la Belgique les Pays Bas lrsquoAllemagne lrsquoAutriche la France lrsquoItalie le Portugal le Japon Israeumll la Hongrie la Pologne la Finlande et la Suisse
Comme le disait le Professeur Ype Elgersma (NL) laquo Nous vivons des temps prometteurs car nous sommes en mesure drsquoinverser une grave maladie geacuteneacutetique raquo Crsquoest pourquoi il est de plus en plus neacutecessaire de renforcer notre action et de trouver drsquoautres financements Parce qursquoil est clair que chaque parent souhaite que son enfant vive heureux et en bonne santeacute
Tout ce que nous faisons nous le faisons pour nos Anges wwwangelmanallianceorg
Pour toute information sur lrsquoAlliance la recherche et drsquoautres questions vous pouvez contacter Betty Willemsen bettywillemsenninafoundationeu
Angelman Today
God only gives us what He is willing to walk us through
-Joell Gingrich Ketcham
ldquo ldquo
ldquo
Adding youtube video
platform to Angelman Today
Video content will include bull Interviews
bull Product Reviews
bull Latest Research
bull How To videos
bull Parent tips and interviews
bull Much more
Email Lizzieangelmantodaycom if you
would like to participate
Announcements
We are expanding Angelman Today to include a new
platform of video media
To do this we will be making some changes that will
include the publishing schedule for the online digital
magazine Starting in January 2016 we will start
publishing Angelman Today quarterly 4 information-
packed editions a year
Subscriptions of the online magazine will remain
FREE
Subscribing to the YouTube channel is also FREE
We welcome all Angelman foundations parents
care takers physicians and researchers to
contribute Deadlines are
bull December 10
bull March 10
bull June 10
bull September 10
Show your support for Angelman Today and subscribe
WWWANGELMANTODAYCOM November December 2015
Toby B Kroger in Kentucky Scotty at Wegmans in NY
There are many challenges that come along with being
a caretaker of an individual with special needs
including a task that for many may be simple a trip
that we all must do regularly which is shop for
groceries
The best inventions are usually created from a persons
desire to satisfy a need or to solve a problem they
encounter in their own life One set of parents did just
that Drew Ann and David Long have three children
Caroline is their middle child she was diagnosed with
Rett syndrome The challenge came when Drew Ann
went grocery shopping with her kids She had a
Making Shopping A Little
Easier This Holiday Season helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
toddler and Caroline in her wheelchair The problem
presented itself as in the form of a question ldquoHow
do you push a wheelchair and a shopping cartrdquo
Drew Ann had the answer She was able to vision the
cart and sat in her car and sketched it out on paper
She knew she was not the first to have this dilemma
nor would she be the last
Carolinersquos Carts can now be found at some select
retailers You can visit wwwcarolinescartcom to
find a location near you
Parents we need your help We at Angelman Today
are calling for action There are not enough stores
with Carolinersquos carts Parents it is up to us We are
the ones that need them so we have to be the ones to
request them at our local retailers Some stores like
Target Shoprite Publix Lucky and Wegmans are
starting to have them available If they are not
currently at a store near you just ask the manager
You will be helping not only your family but the
many other families that may not yet even know this
helpful cart exists
WWWANGELMANTODAYCOM November December 2015
Thank you A big thanks to all of the contributors that help bring you Angelman Today
Angelman Today Supporters
If I Need Help ndash wwwifineedhelporg
All of the Angelman and
Associated
Foundations
across the globe
Additional Contributors
Kat Adams
Maria Cano Moraleda
Erin Bates
Angelman Today is a lifestyle guide to achieving better health for individuals with Angelman Syndrome and their families It is written with your needs in mind but is not a substitute for consulting with your physician or other health care providers The publisher and authors are not responsible for any adverse effects or consequences resulting from the use of the suggestions products or procedures that appear on this website or online magazine All matters regarding your health should be supervised by a licensed health care physician Copyright 2014 Angelman Today LLC All rights reserved worldwide
CONTRIBUTORS
Marilyn Kennedy
Assistant Editor Marilynangelmantodaycom
Sybille Kraft Bellamy
Parent Expert in Nutrition
And LGIT diet FacebookcomAngelmanSyndromeDiet
STAY CONNECTED ON THE GO
DOWNLOAD THE NEW ISSUU APP TODAY ON GOOGLE PLAY
AND NOW IN THE APP STORE
Dr Harry Angelman
1915 ndash 1996
Dr Harry Angelman was an English physician
who identified what is now known as Angelman
Syndrome
He first observed three children who were not
related but showed similar symptoms of severe
intellectual delay stiff jerky gait lack of speech
seizures motor disorders and happy demeanors
Although Dr Angelman was born in Birkenhead
England he was an enthusiast for the language
and country of Italy And it was while vacationing
in Italy he observed an oil painting called A Boy
with a Puppet by the renaissance artist Giovanni
Francesco Caroto at the Castelvecchio museum in
Verona Reminded of the children hersquod observed
Dr Angelman published a paper in 1965 that
described what he called ldquopuppet childrenrdquo At
this time his paper was not immediately
recognized as important
It wasnrsquot until 1982 when Charles A Williams
and Jaime L Frias of the department of Pediatrics
Division of Genetics University of Florida
College of Medicine Gainesville submitted a
paper to the American Journal of Medical
Genetics reporting studies of six patients and
comparing their data to those from previous
reports - severe developmental delay ldquopuppet-
likerdquo gait craniofacial abnormalities and frequent
episodes of laughter- that it became clear the
syndrome was more common than previously
thought They proposed the name of this disorder
be changed to Angelman Syndrome
The History of Angelman Syndrome
Angelman Today
Books Recommended by Parents
Connect with us on
Thanks for your support
Please Share Angelman Today
wwwangelmantodaycom
Last year the Angel Wings Foundation hit
upon a novel idea How about giving
someone a vacation Someone who could
really use it hellipsomeone who deserves it
hellipsomeone who might actually need it to re-
set their lives Well we did just that and it
worked out better than we couldrsquove ever
imagined
So this year wersquore doing it again One
deserving Angelman family will win an all
expense paid vacation to a music and wine
event in Napa California called ldquoLive In The
Vinyardrdquo
We realize that this isnrsquot scientific research
or new breakthrough therapy techniques or
an awareness campaign All of those things
are certainly vital and crucial to our
collective journey as Angelman parents We
cheer them on and support them
wholeheartedly But we at the Angel Wings
Foundation want to wrap our arms around
the Angelman community and give hugs
wherever and whenever we can We know
how fatiguing constant caregiving can be
We also know how isolating it can be for the
Angel to only see the same people day in and
day out So this ldquoAngel Week Offrdquo is just as
much for the Angels as it is for the parents
We will send in a male and female caregiver
to the familyrsquos home to give the Angel a
week off as well Activities will be planned
every day that donrsquot include mom and dad
After all everybody needs a break from
mom and dad sometimes Besides mom and
dad will be getting a massage or golfing or
horseback riding or drinking wine and
listening to music somewhere in Northern
California
So herersquos what you do hellipwrite an essay (500
words or less) describing your Angelman
journey We all have one and they are all
deserving of a great vacation But we can only
do one at a time right now hellipsorry An all-star
panel of judges will read the entries and
narrow them down to a top 5 The they will re-
read them and ONE family will win the
vacation
The panel consists of people from Make-A-
Wish Best Buddies Special Olympics
Angelman Today and one board member from
the Angel Wings Foundation I donrsquot read
them I just get to call you and tell you yoursquove
won hellipI love that part
All entries must be in by Thanksgiving Day
2015 A winner will be chosen and announced
on Christmas Eve hellipwhat a great Christmas
gift Then we will start making arrangements
for the vacation that will take place in April of
2016 A family member or designated care
giver (in charge) must be present with our
caregivers So keep that part in mind Safety
first
Last yearrsquos winners Mary and Rory were so
moved by the experience they have asked if
they can donate to this yearrsquos winner I think
that speaks for itself They sent in a video to
encourage everyone to enter
Hopefully one day wersquoll be able to do this
many times a year But for this year we canrsquot
wait to read the entries and award some
amazing Angel family a break and a time they
will never forget
We love you all Now get to writing
Email they essay entry to
AngelsWeekOffangelmantodaycom
WWWANGELMANTODAYCOM November December 2015
WWWANGELMANTODAYCOM November December 2015
WOULD YOU LIKE TO CONTRIBUTE
We welcome all Angelman foundations parents care takers physicians and researchers
Email articles and pictures to Lizzieangelmantodaycom
Holiday Gift Guide
Radiance Floor Lamp Night Light Star Projector
Chewbeads Military Dog Tags
Krazy Gears Sensory Weighted Blanket
Senseez Vibrating Pillow Crazy Aaronrsquos Thinking Putty
By Kat Adams Melissa is 12 years old and has Angelman
syndrome UPD She loves to play games and
laugh at her big Brother Jacobs jokes she has a
wicked sense of humor
Melissa won the Child of courage award at an
event in her home town I was very proud that
her fellow citizens chose to recognize her daily
struggles and her massive achievements in this
way
Melissa experiences life in such a way that
every day is an adventure she brings so much
love and happiness into both mine and Jacobs
lives
We have set up a small Foundation in Melissas
name to help support research into a cure for
Angelman syndrome and have had many good
times with our fundraising events taking part
in things such as skydiving and even carrying
Melissa in a sedan chair for 5 miles
Life is never dull with a child like Melissa
Lots of tears along the way but much more
laughter
Angels in Action
Last year was such a success we are doing it again Enter a picture of your loved one
with Angelman Syndrome Get your friends and family voting and they could be on
the January cover of Angelman Today Watch our Facebook page for details
2 16
2014 Cover
2015 Cover
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
The Meerdo Family
Kathryn Matt and Stetson from Chip at AS event
Brian and Drew Fitzgerald annual Blarney CupYaron Werber
Because of you AS families benefit
THANK YOU to our phenomenal supporters this past yearHoly Cow Our AS friends and families have truly impressed our socks off this year Your creativity and dedication is shattering past records and touching lives deeply We at the ASF are humbled and honored to have had independent fundraisers raise more than $100000 for the AS community to date
Check out what just a few of our families have done in 2015
Family Fun Day - Michael Drzewiecki and company
Berto and Minnie with their daughter Pam
Annual Tractor Cruise - Horton Kansas
Because of you AS families benefit
THANK YOU to every individual and organization that played a role in these fundraisers either by spearheading attending or donating to these events
Blarney Cup Paddle Tournament The Fitzgeraldrsquos in Ohio $25450
Meerdo Annual Golf Tournament The Meerdorsquos in Utah $19980
Chip Away at AS Golf Tournament The Elyrsquos in Georgia $11683
Tractor Cruise The Olsenrsquos in Kansas $5350
Cure for the Angels Family Day Angelique Tuthill in New York $4747
Discover Day Camp Christina Polleto in New York $4309
Yaron Werber of Ovid Therapeutics raised $3953 for ASF at the Brooklyn Rock n Roll 12 Marathon
Hauser Junior High School Fundraiser in Westchester New York $3535
Custom Harley Davidson Bike Show Noel Perez and Berto Castellanos in California $3360
Pardi Gras Promotion and Sales Proceeds $2500
Tierrarsquos Event $2435
Family Fun Day Michael Drzewiecki in New York $2338
The Hope Classic at Lower Merion High School in Medinah NY $2342
Run Like A Mother 5k Tiffany Cruikshank in Hinsdale Illinois $1880
Oakland Arsquos Fundraiser in California $1345
7th Street Sportsmen Club Fundraiser in Pennsylvania $1000
THANK YOU to all of the fundraisers who have brought in more than $100000 of donations in 2015 We are very excited at the possibilities and creativity our families will bring in 2016
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Summit4Angelman
Father to young boy with AS climbs Mt Kilimanjaro to raise awareness of ASFrom Kyle himself
Irsquom going to take 8 days to climb up the worldrsquos tallest freestanding mountain to raise awareness for Angelman syndrome and Irsquove realized during my training that I donrsquot think I can do it alone Of course Irsquom going up with a great group looking forward to helping the cause in any way they can but Irsquove found such strength in keeping focused on why Irsquom doing this and every time I ldquopicturerdquo my son Madden it keeps me going when I desperately want to quit or cut corners in training If I keep in mind how my son never quits and overcomes his challenges with a smile I realize this mountain isnrsquot quite as tall I as first thought The point ishellipwithout Madden this climb seems a lot more difficult Which got me thinking what if I have an army of Angels with me every step of the climb Irsquom asking you to send me a picture of your Angel so I can take them to the top of Kilimanjaro with me Each photo and story you send me will provide the strength I need to keep going when the air is thin the weather is cold and my head is pounding I will do everything in my power to get to the top with them My chances will be far better with each person I take up with me If I make it to the Summit I promise they will see the view with me at 19341 feet
Visit Kylersquos personal blog at wwwsummit4angelmancom to find out more about Kylersquos journey
How can you helpbull Share your personal Summit story of accomplishment
on Facebook and Twitter and include the hashtag Summit4Angelman
bull Introduce Angelman syndrome to new peoplehellipKylersquos goal is to raise awareness of AS and he wants to reach 19341mdashthatrsquos one new person for every foot that Mt Kilimanjaro is tall
bull Share a photo of your loved one with AS (send to kyrooneyoutlookcom) for Kyle to take to the top of Mt Kilimanjaro
Looks Whatrsquos Shouted From the Mountaintop Angelman Syndrome Awareness
ASF Communication Training Series
Having challenges with helping your loved one with AS better communicate We have the resource for you In collaboration with several AS communication experts the ASF has created a FREE communication resource that you can access AT ANY TIME the ASF Communication Training Series This Series takes all of the hours of great communication workshops and breaks them down into smaller digestible parts so that you and your individual with AS can reach herhis greatest communication success at any age Using web-based teaching the Series is designed to be sequential and you can join at any time and proceed through the training at your childrsquos pace of learning Click here for more and to access the schedule past webinar recordings and handouts
Meet the experts
ERIN SHELDON M EDErin earned her Masters of Education studying the learning characteristics of students with AS Erin works as an assistive technology consultant with a focus on supporting students with complex learning needs to access the general curriculum in inclusive classrooms She founded the Angelman Literacy
Project an initiative to support families and school teams to foster emergent literacy development in students with AS She presents professional development workshops and webinars across North America and Europe including at conferences such as Closing the Gap and ATIA and has authored manuals book chapters and journal articles
DR CAROLINE MUSSELWHITE CCC-SLPDr Musselwhite is an assistive technology specialist with more than 35 years of experience working with children and adolescents with significant disabilities in a variety of settings including Head Start developmental day programs homes and the public schools Dr
Musselwhite has written a number of textbooks and ldquohow-tordquo books on a range of topics and has also authored many books and software programs for youth with disabilities She has presented thousands of workshops throughout North and South America Australia Europe and Africa and is a founding member and Fellow of the International Society for Augmentative and Alternative Communication
MAUREEN NEVERS MS CCC-SLP LICENSED SPEECH-LANGUAGE PATHOLOGIST AUGMENTATIVE COMMUNICATION SPECIALISTMaureen earned a BS in Communication Disorders from the University of Massachusetts at Amherst in 1991 then earned a MS in Speech-Language
Pathology from the University of Vermont in 1993 Her graduate work included participation in a comprehensive training program in AAC She worked for Easter Seals in Massachusetts for eleven years before joining the Center on Disability and Community Inclusion at the University of Vermont eleven years ago She currently works as an Augmentative Communication Specialist with the Vermont I-Team where she is part of an interdisciplinary team that consults with school teams across the state to support individuals with complex communication needs
Communication training you can understand and use
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
MARY-LOUISE BERTRAMMary-Louise Bertram is a qualified Early Childhood Teacher from Perth Western Australia with special qualifications and training in the areas of communication sensory processing and literacy supports for children with complex disabilities Mary-Louise became involved with the AS community in 2007 while
teaching a class of six children four of whom had AS (all Del +) Since then Mary-Louise has worked with people with AS of all ages across Western Australia in the first statewide comprehensive AS-specific communication intervention of its kind She has supported families across the globe to advocate for their childrsquos right to high-quality communication and education intervention Mary-Louise currently works in private practice supporting individuals with complex disabilities (and their families) with communication and literacy
Families are also encouraged to support each other and share tips via the Seriesrsquo private ASF Communication Training Series Facebook group
Twenty years ago we never would have imagined that so many generous people like you would open their hearts to help those affected by AS Your generosity eases the financial and emotional burden on families by supporting our family resource program and has helped our researchers make significant breakthroughs in treatments and potential cures for AS Without you there would be no us We are forever grateful for your support
Click here to make a contribution to the ASFrsquos end-of-year appeal All donations are 100 tax deductible per IRS regulations
Itrsquos ALL because of YOU
WWWANGELMANTODAYCOM November December 2015
By Cass Gamero
My sons name is Alexander and he was
recently diagnosed in July 2015 Hes only
18 months old and is loved by all Anyone
who meets him cant help but be
memorized by his long eye lashes amp
beaming smile When you see him you
cant help but smile My son also has some
vision problems but is getting better He
loves his toy keys and could recognize his
bottle from anywhere Hes lovable
friendly joyful and bright
Angels in Action Celebrating the Abilities of our Angels
Gareth Edwards (Star Wars Director) acknowledges
The force is strong in the Angelman Alliance
It is often said that parents will do anything for their children A rare
disease called Angelman Syndrome is proving testimony to this fact
Driven by an unstoppable love for their children parent organisations
from 15 countries have formed an alliance to work together to progress
research that may help their children to speak run and live life to their
full potential As Gareth Edwards patron of the UK Charity that hosted
this yearsrsquo conference in Liverpool England said during his speech at
the conference ldquoAngels go further and beyondrdquo
With the support of ISIS pharmaceuticals recent findings by professor Art Beaudet (USA) are expected to
progress to clinical trials Results from other researchers in collaboration with pharmaceutical companies
also have promising results to improve the quality of life for children amp adults with Angelman Syndrome
Initially having to overcome language barriers cultural differences and different legal systems the parent
organisations created an international Alliance on Angelman Syndrome (ASA) to drive research forward
pooling resources and funds In the first two years over half a million eurorsquos (550000-) was raised with
more parent organisations worldwide continuing to join The parent organisations met this year in
Liverpool during the 50th anniversary of Angelman Syndrome At this conference representatives came
from England Ireland Belgium Netherlands Germany Austria France Italy Portugal Japan Israel
Hungary Poland Finland and Switzerland
As professor Ype Elgersma (NL) said ldquoThese are very exciting times because we might actually have the
possibility to reverse a severe genetic diseaserdquo Therefore the need to get things going is stronger than ever
within the Alliance and the need for more funding is evident Because in the end every parent wants their
child to be as happy and healthy as possible
Everything we do we do for our Angels wwwangelmanallianceor g
For information about the Alliance the research and other questions you can contact Betty Willemsen
bettywillemsenninafoundationeu
Dr Harry Angelman
1915 ndash 1996
El Dr Harry Angelman fue un meacutedico Ingleacutes quien
identificoacute lo que hoy en diacutea se llama Siacutendrome de
Angelman
Nacioacute en Birkenhead Inglaterra Le fascinaba el idioma
y la cultura de Italia
El fue el primero quien observoacute treacutes nintildeos no
relacionados quienes demostraban siacutentomas similares ndash
atrasos severos intelectuales un modo de andar que era
espasmoacutedico y riacutegido ausencia del hablar
convulsiones y una disposicioacuten contento
Luego duranted unas vacaciones en Italia descubrioacute
una pintura llamada ldquoUn Nintildeo con una Marionetardquo
creado por el artista del Renascimiento Giovanni
Francesco Caroto en el museo Castelvecchio en
Verona La pintura le hizo pensar en los nintildeos que eran
sus pacientes y le condujo a publicar un artiacuteculo
profesional en el antildeo 1965 que describiacutea lo que el
llamaba ldquoNintildeos Marionetasrdquo En aquel momento la
importancia de su artiacuteculo no fue reconocido como algo
importante
No pasoacute nada mas hasta Charles A Williams y Jaime L
Frias del departamento de Pediacuteatra Divisiacuteon de
Geneacutetica de la Universidad de Florida Colegio de
Medicina de Gainesville Florida sometieron un
artiacuteculo a la Revista Americana de Geneacutetica Meacutedica
explicando estudios de seacuteis pacientes comparando sus
datos con los de informes previos ndash incluyendo atrasos
intelectuales severos el andar como un ldquomarionetardquo
anormalidades cranio-faciales y espisodios frecuentes
de risas De repente se notoacute que eso era mucho maacutes
comuacuten de lo que anteriormente se creiacutea Ellos
propusieron ponerle el nombre de Siacutendrome de
Angelman en honor del Dr Harry Angelman
La Historia del Siacutendrome de Angelman (Spanish Translation)
Angelman Today
Gareth Edwards (Directeur de Star Wars) lrsquoaffirme la Force est avec lrsquoAngelman Syndrome Alliance (ASA)
On dit souvent que les parents feraient tout pour leurs enfants et crsquoest ce qui se veacuterifie agrave lrsquooccasion drsquoune maladie rare appeleacutee le syndrome drsquoAngelman Animeacutees drsquoun amour infini pour leurs enfants des organisations parentales de 15 pays ont formeacute une alliance dans le but de faire avancer la recherche qui permettra agrave ces enfants de parler courir et vivre leur vie pleinement Comme lrsquoaffirmait dans son intervention Gareth Edwards soutien de lrsquoassociation de bienfaisance anglaise qui accueillait cette anneacutee la confeacuterence internationale agrave Liverpool laquo Les Anges vont plus loin et au-delagrave raquo
De reacutecentes deacutecouvertes dues par le Professeur Art Beaudet (USA) avec le soutien des laboratoires pharmaceutiques ISIS vont conduire agrave des essais cliniques Drsquoautres chercheurs soutenus par des socieacuteteacutes pharmaceutiques ont obtenu des reacutesultats prometteurs pour ameacuteliorer la qualiteacute de vie des enfants et des adultes atteints du syndrome drsquoAngelman
Surmontant les obstacles dus aux langues aux diffeacuterences culturelles et leacutegales les organisations parentales ont creacuteeacute lrsquoAlliance du Syndrome drsquoAngelman (ASA) visant agrave faire progresser la recherche et agrave mettre en commun les ressources et les financements Dans les deux premiegraveres anneacutees 550 000 euro ont eacuteteacute reacuteunis et drsquoautres organisations venues du monde entier souhaitent srsquoy associer Cette anneacutee les organisations de parents se sont rencontreacutees agrave Liverpool dans le cadre du 50egraveme anniversaire de lrsquoidentification du syndrome Eacutetaient repreacutesenteacutes lrsquoAngleterre lrsquoIrlande la Belgique les Pays Bas lrsquoAllemagne lrsquoAutriche la France lrsquoItalie le Portugal le Japon Israeumll la Hongrie la Pologne la Finlande et la Suisse
Comme le disait le Professeur Ype Elgersma (NL) laquo Nous vivons des temps prometteurs car nous sommes en mesure drsquoinverser une grave maladie geacuteneacutetique raquo Crsquoest pourquoi il est de plus en plus neacutecessaire de renforcer notre action et de trouver drsquoautres financements Parce qursquoil est clair que chaque parent souhaite que son enfant vive heureux et en bonne santeacute
Tout ce que nous faisons nous le faisons pour nos Anges wwwangelmanallianceorg
Pour toute information sur lrsquoAlliance la recherche et drsquoautres questions vous pouvez contacter Betty Willemsen bettywillemsenninafoundationeu
Angelman Today
God only gives us what He is willing to walk us through
-Joell Gingrich Ketcham
ldquo ldquo
ldquo
Adding youtube video
platform to Angelman Today
Video content will include bull Interviews
bull Product Reviews
bull Latest Research
bull How To videos
bull Parent tips and interviews
bull Much more
Email Lizzieangelmantodaycom if you
would like to participate
Announcements
We are expanding Angelman Today to include a new
platform of video media
To do this we will be making some changes that will
include the publishing schedule for the online digital
magazine Starting in January 2016 we will start
publishing Angelman Today quarterly 4 information-
packed editions a year
Subscriptions of the online magazine will remain
FREE
Subscribing to the YouTube channel is also FREE
We welcome all Angelman foundations parents
care takers physicians and researchers to
contribute Deadlines are
bull December 10
bull March 10
bull June 10
bull September 10
Show your support for Angelman Today and subscribe
WWWANGELMANTODAYCOM November December 2015
Toby B Kroger in Kentucky Scotty at Wegmans in NY
There are many challenges that come along with being
a caretaker of an individual with special needs
including a task that for many may be simple a trip
that we all must do regularly which is shop for
groceries
The best inventions are usually created from a persons
desire to satisfy a need or to solve a problem they
encounter in their own life One set of parents did just
that Drew Ann and David Long have three children
Caroline is their middle child she was diagnosed with
Rett syndrome The challenge came when Drew Ann
went grocery shopping with her kids She had a
Making Shopping A Little
Easier This Holiday Season helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
toddler and Caroline in her wheelchair The problem
presented itself as in the form of a question ldquoHow
do you push a wheelchair and a shopping cartrdquo
Drew Ann had the answer She was able to vision the
cart and sat in her car and sketched it out on paper
She knew she was not the first to have this dilemma
nor would she be the last
Carolinersquos Carts can now be found at some select
retailers You can visit wwwcarolinescartcom to
find a location near you
Parents we need your help We at Angelman Today
are calling for action There are not enough stores
with Carolinersquos carts Parents it is up to us We are
the ones that need them so we have to be the ones to
request them at our local retailers Some stores like
Target Shoprite Publix Lucky and Wegmans are
starting to have them available If they are not
currently at a store near you just ask the manager
You will be helping not only your family but the
many other families that may not yet even know this
helpful cart exists
WWWANGELMANTODAYCOM November December 2015
Thank you A big thanks to all of the contributors that help bring you Angelman Today
Angelman Today Supporters
If I Need Help ndash wwwifineedhelporg
All of the Angelman and
Associated
Foundations
across the globe
Additional Contributors
Kat Adams
Maria Cano Moraleda
Erin Bates
Angelman Today is a lifestyle guide to achieving better health for individuals with Angelman Syndrome and their families It is written with your needs in mind but is not a substitute for consulting with your physician or other health care providers The publisher and authors are not responsible for any adverse effects or consequences resulting from the use of the suggestions products or procedures that appear on this website or online magazine All matters regarding your health should be supervised by a licensed health care physician Copyright 2014 Angelman Today LLC All rights reserved worldwide
CONTRIBUTORS
Marilyn Kennedy
Assistant Editor Marilynangelmantodaycom
Sybille Kraft Bellamy
Parent Expert in Nutrition
And LGIT diet FacebookcomAngelmanSyndromeDiet
STAY CONNECTED ON THE GO
DOWNLOAD THE NEW ISSUU APP TODAY ON GOOGLE PLAY
AND NOW IN THE APP STORE
Dr Harry Angelman
1915 ndash 1996
Dr Harry Angelman was an English physician
who identified what is now known as Angelman
Syndrome
He first observed three children who were not
related but showed similar symptoms of severe
intellectual delay stiff jerky gait lack of speech
seizures motor disorders and happy demeanors
Although Dr Angelman was born in Birkenhead
England he was an enthusiast for the language
and country of Italy And it was while vacationing
in Italy he observed an oil painting called A Boy
with a Puppet by the renaissance artist Giovanni
Francesco Caroto at the Castelvecchio museum in
Verona Reminded of the children hersquod observed
Dr Angelman published a paper in 1965 that
described what he called ldquopuppet childrenrdquo At
this time his paper was not immediately
recognized as important
It wasnrsquot until 1982 when Charles A Williams
and Jaime L Frias of the department of Pediatrics
Division of Genetics University of Florida
College of Medicine Gainesville submitted a
paper to the American Journal of Medical
Genetics reporting studies of six patients and
comparing their data to those from previous
reports - severe developmental delay ldquopuppet-
likerdquo gait craniofacial abnormalities and frequent
episodes of laughter- that it became clear the
syndrome was more common than previously
thought They proposed the name of this disorder
be changed to Angelman Syndrome
The History of Angelman Syndrome
Angelman Today
Books Recommended by Parents
Connect with us on
Thanks for your support
Please Share Angelman Today
wwwangelmantodaycom
WWWANGELMANTODAYCOM November December 2015
WOULD YOU LIKE TO CONTRIBUTE
We welcome all Angelman foundations parents care takers physicians and researchers
Email articles and pictures to Lizzieangelmantodaycom
Holiday Gift Guide
Radiance Floor Lamp Night Light Star Projector
Chewbeads Military Dog Tags
Krazy Gears Sensory Weighted Blanket
Senseez Vibrating Pillow Crazy Aaronrsquos Thinking Putty
By Kat Adams Melissa is 12 years old and has Angelman
syndrome UPD She loves to play games and
laugh at her big Brother Jacobs jokes she has a
wicked sense of humor
Melissa won the Child of courage award at an
event in her home town I was very proud that
her fellow citizens chose to recognize her daily
struggles and her massive achievements in this
way
Melissa experiences life in such a way that
every day is an adventure she brings so much
love and happiness into both mine and Jacobs
lives
We have set up a small Foundation in Melissas
name to help support research into a cure for
Angelman syndrome and have had many good
times with our fundraising events taking part
in things such as skydiving and even carrying
Melissa in a sedan chair for 5 miles
Life is never dull with a child like Melissa
Lots of tears along the way but much more
laughter
Angels in Action
Last year was such a success we are doing it again Enter a picture of your loved one
with Angelman Syndrome Get your friends and family voting and they could be on
the January cover of Angelman Today Watch our Facebook page for details
2 16
2014 Cover
2015 Cover
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
The Meerdo Family
Kathryn Matt and Stetson from Chip at AS event
Brian and Drew Fitzgerald annual Blarney CupYaron Werber
Because of you AS families benefit
THANK YOU to our phenomenal supporters this past yearHoly Cow Our AS friends and families have truly impressed our socks off this year Your creativity and dedication is shattering past records and touching lives deeply We at the ASF are humbled and honored to have had independent fundraisers raise more than $100000 for the AS community to date
Check out what just a few of our families have done in 2015
Family Fun Day - Michael Drzewiecki and company
Berto and Minnie with their daughter Pam
Annual Tractor Cruise - Horton Kansas
Because of you AS families benefit
THANK YOU to every individual and organization that played a role in these fundraisers either by spearheading attending or donating to these events
Blarney Cup Paddle Tournament The Fitzgeraldrsquos in Ohio $25450
Meerdo Annual Golf Tournament The Meerdorsquos in Utah $19980
Chip Away at AS Golf Tournament The Elyrsquos in Georgia $11683
Tractor Cruise The Olsenrsquos in Kansas $5350
Cure for the Angels Family Day Angelique Tuthill in New York $4747
Discover Day Camp Christina Polleto in New York $4309
Yaron Werber of Ovid Therapeutics raised $3953 for ASF at the Brooklyn Rock n Roll 12 Marathon
Hauser Junior High School Fundraiser in Westchester New York $3535
Custom Harley Davidson Bike Show Noel Perez and Berto Castellanos in California $3360
Pardi Gras Promotion and Sales Proceeds $2500
Tierrarsquos Event $2435
Family Fun Day Michael Drzewiecki in New York $2338
The Hope Classic at Lower Merion High School in Medinah NY $2342
Run Like A Mother 5k Tiffany Cruikshank in Hinsdale Illinois $1880
Oakland Arsquos Fundraiser in California $1345
7th Street Sportsmen Club Fundraiser in Pennsylvania $1000
THANK YOU to all of the fundraisers who have brought in more than $100000 of donations in 2015 We are very excited at the possibilities and creativity our families will bring in 2016
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Summit4Angelman
Father to young boy with AS climbs Mt Kilimanjaro to raise awareness of ASFrom Kyle himself
Irsquom going to take 8 days to climb up the worldrsquos tallest freestanding mountain to raise awareness for Angelman syndrome and Irsquove realized during my training that I donrsquot think I can do it alone Of course Irsquom going up with a great group looking forward to helping the cause in any way they can but Irsquove found such strength in keeping focused on why Irsquom doing this and every time I ldquopicturerdquo my son Madden it keeps me going when I desperately want to quit or cut corners in training If I keep in mind how my son never quits and overcomes his challenges with a smile I realize this mountain isnrsquot quite as tall I as first thought The point ishellipwithout Madden this climb seems a lot more difficult Which got me thinking what if I have an army of Angels with me every step of the climb Irsquom asking you to send me a picture of your Angel so I can take them to the top of Kilimanjaro with me Each photo and story you send me will provide the strength I need to keep going when the air is thin the weather is cold and my head is pounding I will do everything in my power to get to the top with them My chances will be far better with each person I take up with me If I make it to the Summit I promise they will see the view with me at 19341 feet
Visit Kylersquos personal blog at wwwsummit4angelmancom to find out more about Kylersquos journey
How can you helpbull Share your personal Summit story of accomplishment
on Facebook and Twitter and include the hashtag Summit4Angelman
bull Introduce Angelman syndrome to new peoplehellipKylersquos goal is to raise awareness of AS and he wants to reach 19341mdashthatrsquos one new person for every foot that Mt Kilimanjaro is tall
bull Share a photo of your loved one with AS (send to kyrooneyoutlookcom) for Kyle to take to the top of Mt Kilimanjaro
Looks Whatrsquos Shouted From the Mountaintop Angelman Syndrome Awareness
ASF Communication Training Series
Having challenges with helping your loved one with AS better communicate We have the resource for you In collaboration with several AS communication experts the ASF has created a FREE communication resource that you can access AT ANY TIME the ASF Communication Training Series This Series takes all of the hours of great communication workshops and breaks them down into smaller digestible parts so that you and your individual with AS can reach herhis greatest communication success at any age Using web-based teaching the Series is designed to be sequential and you can join at any time and proceed through the training at your childrsquos pace of learning Click here for more and to access the schedule past webinar recordings and handouts
Meet the experts
ERIN SHELDON M EDErin earned her Masters of Education studying the learning characteristics of students with AS Erin works as an assistive technology consultant with a focus on supporting students with complex learning needs to access the general curriculum in inclusive classrooms She founded the Angelman Literacy
Project an initiative to support families and school teams to foster emergent literacy development in students with AS She presents professional development workshops and webinars across North America and Europe including at conferences such as Closing the Gap and ATIA and has authored manuals book chapters and journal articles
DR CAROLINE MUSSELWHITE CCC-SLPDr Musselwhite is an assistive technology specialist with more than 35 years of experience working with children and adolescents with significant disabilities in a variety of settings including Head Start developmental day programs homes and the public schools Dr
Musselwhite has written a number of textbooks and ldquohow-tordquo books on a range of topics and has also authored many books and software programs for youth with disabilities She has presented thousands of workshops throughout North and South America Australia Europe and Africa and is a founding member and Fellow of the International Society for Augmentative and Alternative Communication
MAUREEN NEVERS MS CCC-SLP LICENSED SPEECH-LANGUAGE PATHOLOGIST AUGMENTATIVE COMMUNICATION SPECIALISTMaureen earned a BS in Communication Disorders from the University of Massachusetts at Amherst in 1991 then earned a MS in Speech-Language
Pathology from the University of Vermont in 1993 Her graduate work included participation in a comprehensive training program in AAC She worked for Easter Seals in Massachusetts for eleven years before joining the Center on Disability and Community Inclusion at the University of Vermont eleven years ago She currently works as an Augmentative Communication Specialist with the Vermont I-Team where she is part of an interdisciplinary team that consults with school teams across the state to support individuals with complex communication needs
Communication training you can understand and use
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
MARY-LOUISE BERTRAMMary-Louise Bertram is a qualified Early Childhood Teacher from Perth Western Australia with special qualifications and training in the areas of communication sensory processing and literacy supports for children with complex disabilities Mary-Louise became involved with the AS community in 2007 while
teaching a class of six children four of whom had AS (all Del +) Since then Mary-Louise has worked with people with AS of all ages across Western Australia in the first statewide comprehensive AS-specific communication intervention of its kind She has supported families across the globe to advocate for their childrsquos right to high-quality communication and education intervention Mary-Louise currently works in private practice supporting individuals with complex disabilities (and their families) with communication and literacy
Families are also encouraged to support each other and share tips via the Seriesrsquo private ASF Communication Training Series Facebook group
Twenty years ago we never would have imagined that so many generous people like you would open their hearts to help those affected by AS Your generosity eases the financial and emotional burden on families by supporting our family resource program and has helped our researchers make significant breakthroughs in treatments and potential cures for AS Without you there would be no us We are forever grateful for your support
Click here to make a contribution to the ASFrsquos end-of-year appeal All donations are 100 tax deductible per IRS regulations
Itrsquos ALL because of YOU
WWWANGELMANTODAYCOM November December 2015
By Cass Gamero
My sons name is Alexander and he was
recently diagnosed in July 2015 Hes only
18 months old and is loved by all Anyone
who meets him cant help but be
memorized by his long eye lashes amp
beaming smile When you see him you
cant help but smile My son also has some
vision problems but is getting better He
loves his toy keys and could recognize his
bottle from anywhere Hes lovable
friendly joyful and bright
Angels in Action Celebrating the Abilities of our Angels
Gareth Edwards (Star Wars Director) acknowledges
The force is strong in the Angelman Alliance
It is often said that parents will do anything for their children A rare
disease called Angelman Syndrome is proving testimony to this fact
Driven by an unstoppable love for their children parent organisations
from 15 countries have formed an alliance to work together to progress
research that may help their children to speak run and live life to their
full potential As Gareth Edwards patron of the UK Charity that hosted
this yearsrsquo conference in Liverpool England said during his speech at
the conference ldquoAngels go further and beyondrdquo
With the support of ISIS pharmaceuticals recent findings by professor Art Beaudet (USA) are expected to
progress to clinical trials Results from other researchers in collaboration with pharmaceutical companies
also have promising results to improve the quality of life for children amp adults with Angelman Syndrome
Initially having to overcome language barriers cultural differences and different legal systems the parent
organisations created an international Alliance on Angelman Syndrome (ASA) to drive research forward
pooling resources and funds In the first two years over half a million eurorsquos (550000-) was raised with
more parent organisations worldwide continuing to join The parent organisations met this year in
Liverpool during the 50th anniversary of Angelman Syndrome At this conference representatives came
from England Ireland Belgium Netherlands Germany Austria France Italy Portugal Japan Israel
Hungary Poland Finland and Switzerland
As professor Ype Elgersma (NL) said ldquoThese are very exciting times because we might actually have the
possibility to reverse a severe genetic diseaserdquo Therefore the need to get things going is stronger than ever
within the Alliance and the need for more funding is evident Because in the end every parent wants their
child to be as happy and healthy as possible
Everything we do we do for our Angels wwwangelmanallianceor g
For information about the Alliance the research and other questions you can contact Betty Willemsen
bettywillemsenninafoundationeu
Dr Harry Angelman
1915 ndash 1996
El Dr Harry Angelman fue un meacutedico Ingleacutes quien
identificoacute lo que hoy en diacutea se llama Siacutendrome de
Angelman
Nacioacute en Birkenhead Inglaterra Le fascinaba el idioma
y la cultura de Italia
El fue el primero quien observoacute treacutes nintildeos no
relacionados quienes demostraban siacutentomas similares ndash
atrasos severos intelectuales un modo de andar que era
espasmoacutedico y riacutegido ausencia del hablar
convulsiones y una disposicioacuten contento
Luego duranted unas vacaciones en Italia descubrioacute
una pintura llamada ldquoUn Nintildeo con una Marionetardquo
creado por el artista del Renascimiento Giovanni
Francesco Caroto en el museo Castelvecchio en
Verona La pintura le hizo pensar en los nintildeos que eran
sus pacientes y le condujo a publicar un artiacuteculo
profesional en el antildeo 1965 que describiacutea lo que el
llamaba ldquoNintildeos Marionetasrdquo En aquel momento la
importancia de su artiacuteculo no fue reconocido como algo
importante
No pasoacute nada mas hasta Charles A Williams y Jaime L
Frias del departamento de Pediacuteatra Divisiacuteon de
Geneacutetica de la Universidad de Florida Colegio de
Medicina de Gainesville Florida sometieron un
artiacuteculo a la Revista Americana de Geneacutetica Meacutedica
explicando estudios de seacuteis pacientes comparando sus
datos con los de informes previos ndash incluyendo atrasos
intelectuales severos el andar como un ldquomarionetardquo
anormalidades cranio-faciales y espisodios frecuentes
de risas De repente se notoacute que eso era mucho maacutes
comuacuten de lo que anteriormente se creiacutea Ellos
propusieron ponerle el nombre de Siacutendrome de
Angelman en honor del Dr Harry Angelman
La Historia del Siacutendrome de Angelman (Spanish Translation)
Angelman Today
Gareth Edwards (Directeur de Star Wars) lrsquoaffirme la Force est avec lrsquoAngelman Syndrome Alliance (ASA)
On dit souvent que les parents feraient tout pour leurs enfants et crsquoest ce qui se veacuterifie agrave lrsquooccasion drsquoune maladie rare appeleacutee le syndrome drsquoAngelman Animeacutees drsquoun amour infini pour leurs enfants des organisations parentales de 15 pays ont formeacute une alliance dans le but de faire avancer la recherche qui permettra agrave ces enfants de parler courir et vivre leur vie pleinement Comme lrsquoaffirmait dans son intervention Gareth Edwards soutien de lrsquoassociation de bienfaisance anglaise qui accueillait cette anneacutee la confeacuterence internationale agrave Liverpool laquo Les Anges vont plus loin et au-delagrave raquo
De reacutecentes deacutecouvertes dues par le Professeur Art Beaudet (USA) avec le soutien des laboratoires pharmaceutiques ISIS vont conduire agrave des essais cliniques Drsquoautres chercheurs soutenus par des socieacuteteacutes pharmaceutiques ont obtenu des reacutesultats prometteurs pour ameacuteliorer la qualiteacute de vie des enfants et des adultes atteints du syndrome drsquoAngelman
Surmontant les obstacles dus aux langues aux diffeacuterences culturelles et leacutegales les organisations parentales ont creacuteeacute lrsquoAlliance du Syndrome drsquoAngelman (ASA) visant agrave faire progresser la recherche et agrave mettre en commun les ressources et les financements Dans les deux premiegraveres anneacutees 550 000 euro ont eacuteteacute reacuteunis et drsquoautres organisations venues du monde entier souhaitent srsquoy associer Cette anneacutee les organisations de parents se sont rencontreacutees agrave Liverpool dans le cadre du 50egraveme anniversaire de lrsquoidentification du syndrome Eacutetaient repreacutesenteacutes lrsquoAngleterre lrsquoIrlande la Belgique les Pays Bas lrsquoAllemagne lrsquoAutriche la France lrsquoItalie le Portugal le Japon Israeumll la Hongrie la Pologne la Finlande et la Suisse
Comme le disait le Professeur Ype Elgersma (NL) laquo Nous vivons des temps prometteurs car nous sommes en mesure drsquoinverser une grave maladie geacuteneacutetique raquo Crsquoest pourquoi il est de plus en plus neacutecessaire de renforcer notre action et de trouver drsquoautres financements Parce qursquoil est clair que chaque parent souhaite que son enfant vive heureux et en bonne santeacute
Tout ce que nous faisons nous le faisons pour nos Anges wwwangelmanallianceorg
Pour toute information sur lrsquoAlliance la recherche et drsquoautres questions vous pouvez contacter Betty Willemsen bettywillemsenninafoundationeu
Angelman Today
God only gives us what He is willing to walk us through
-Joell Gingrich Ketcham
ldquo ldquo
ldquo
Adding youtube video
platform to Angelman Today
Video content will include bull Interviews
bull Product Reviews
bull Latest Research
bull How To videos
bull Parent tips and interviews
bull Much more
Email Lizzieangelmantodaycom if you
would like to participate
Announcements
We are expanding Angelman Today to include a new
platform of video media
To do this we will be making some changes that will
include the publishing schedule for the online digital
magazine Starting in January 2016 we will start
publishing Angelman Today quarterly 4 information-
packed editions a year
Subscriptions of the online magazine will remain
FREE
Subscribing to the YouTube channel is also FREE
We welcome all Angelman foundations parents
care takers physicians and researchers to
contribute Deadlines are
bull December 10
bull March 10
bull June 10
bull September 10
Show your support for Angelman Today and subscribe
WWWANGELMANTODAYCOM November December 2015
Toby B Kroger in Kentucky Scotty at Wegmans in NY
There are many challenges that come along with being
a caretaker of an individual with special needs
including a task that for many may be simple a trip
that we all must do regularly which is shop for
groceries
The best inventions are usually created from a persons
desire to satisfy a need or to solve a problem they
encounter in their own life One set of parents did just
that Drew Ann and David Long have three children
Caroline is their middle child she was diagnosed with
Rett syndrome The challenge came when Drew Ann
went grocery shopping with her kids She had a
Making Shopping A Little
Easier This Holiday Season helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
toddler and Caroline in her wheelchair The problem
presented itself as in the form of a question ldquoHow
do you push a wheelchair and a shopping cartrdquo
Drew Ann had the answer She was able to vision the
cart and sat in her car and sketched it out on paper
She knew she was not the first to have this dilemma
nor would she be the last
Carolinersquos Carts can now be found at some select
retailers You can visit wwwcarolinescartcom to
find a location near you
Parents we need your help We at Angelman Today
are calling for action There are not enough stores
with Carolinersquos carts Parents it is up to us We are
the ones that need them so we have to be the ones to
request them at our local retailers Some stores like
Target Shoprite Publix Lucky and Wegmans are
starting to have them available If they are not
currently at a store near you just ask the manager
You will be helping not only your family but the
many other families that may not yet even know this
helpful cart exists
WWWANGELMANTODAYCOM November December 2015
Thank you A big thanks to all of the contributors that help bring you Angelman Today
Angelman Today Supporters
If I Need Help ndash wwwifineedhelporg
All of the Angelman and
Associated
Foundations
across the globe
Additional Contributors
Kat Adams
Maria Cano Moraleda
Erin Bates
Angelman Today is a lifestyle guide to achieving better health for individuals with Angelman Syndrome and their families It is written with your needs in mind but is not a substitute for consulting with your physician or other health care providers The publisher and authors are not responsible for any adverse effects or consequences resulting from the use of the suggestions products or procedures that appear on this website or online magazine All matters regarding your health should be supervised by a licensed health care physician Copyright 2014 Angelman Today LLC All rights reserved worldwide
CONTRIBUTORS
Marilyn Kennedy
Assistant Editor Marilynangelmantodaycom
Sybille Kraft Bellamy
Parent Expert in Nutrition
And LGIT diet FacebookcomAngelmanSyndromeDiet
STAY CONNECTED ON THE GO
DOWNLOAD THE NEW ISSUU APP TODAY ON GOOGLE PLAY
AND NOW IN THE APP STORE
Dr Harry Angelman
1915 ndash 1996
Dr Harry Angelman was an English physician
who identified what is now known as Angelman
Syndrome
He first observed three children who were not
related but showed similar symptoms of severe
intellectual delay stiff jerky gait lack of speech
seizures motor disorders and happy demeanors
Although Dr Angelman was born in Birkenhead
England he was an enthusiast for the language
and country of Italy And it was while vacationing
in Italy he observed an oil painting called A Boy
with a Puppet by the renaissance artist Giovanni
Francesco Caroto at the Castelvecchio museum in
Verona Reminded of the children hersquod observed
Dr Angelman published a paper in 1965 that
described what he called ldquopuppet childrenrdquo At
this time his paper was not immediately
recognized as important
It wasnrsquot until 1982 when Charles A Williams
and Jaime L Frias of the department of Pediatrics
Division of Genetics University of Florida
College of Medicine Gainesville submitted a
paper to the American Journal of Medical
Genetics reporting studies of six patients and
comparing their data to those from previous
reports - severe developmental delay ldquopuppet-
likerdquo gait craniofacial abnormalities and frequent
episodes of laughter- that it became clear the
syndrome was more common than previously
thought They proposed the name of this disorder
be changed to Angelman Syndrome
The History of Angelman Syndrome
Angelman Today
Books Recommended by Parents
Connect with us on
Thanks for your support
Please Share Angelman Today
wwwangelmantodaycom
Holiday Gift Guide
Radiance Floor Lamp Night Light Star Projector
Chewbeads Military Dog Tags
Krazy Gears Sensory Weighted Blanket
Senseez Vibrating Pillow Crazy Aaronrsquos Thinking Putty
By Kat Adams Melissa is 12 years old and has Angelman
syndrome UPD She loves to play games and
laugh at her big Brother Jacobs jokes she has a
wicked sense of humor
Melissa won the Child of courage award at an
event in her home town I was very proud that
her fellow citizens chose to recognize her daily
struggles and her massive achievements in this
way
Melissa experiences life in such a way that
every day is an adventure she brings so much
love and happiness into both mine and Jacobs
lives
We have set up a small Foundation in Melissas
name to help support research into a cure for
Angelman syndrome and have had many good
times with our fundraising events taking part
in things such as skydiving and even carrying
Melissa in a sedan chair for 5 miles
Life is never dull with a child like Melissa
Lots of tears along the way but much more
laughter
Angels in Action
Last year was such a success we are doing it again Enter a picture of your loved one
with Angelman Syndrome Get your friends and family voting and they could be on
the January cover of Angelman Today Watch our Facebook page for details
2 16
2014 Cover
2015 Cover
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
The Meerdo Family
Kathryn Matt and Stetson from Chip at AS event
Brian and Drew Fitzgerald annual Blarney CupYaron Werber
Because of you AS families benefit
THANK YOU to our phenomenal supporters this past yearHoly Cow Our AS friends and families have truly impressed our socks off this year Your creativity and dedication is shattering past records and touching lives deeply We at the ASF are humbled and honored to have had independent fundraisers raise more than $100000 for the AS community to date
Check out what just a few of our families have done in 2015
Family Fun Day - Michael Drzewiecki and company
Berto and Minnie with their daughter Pam
Annual Tractor Cruise - Horton Kansas
Because of you AS families benefit
THANK YOU to every individual and organization that played a role in these fundraisers either by spearheading attending or donating to these events
Blarney Cup Paddle Tournament The Fitzgeraldrsquos in Ohio $25450
Meerdo Annual Golf Tournament The Meerdorsquos in Utah $19980
Chip Away at AS Golf Tournament The Elyrsquos in Georgia $11683
Tractor Cruise The Olsenrsquos in Kansas $5350
Cure for the Angels Family Day Angelique Tuthill in New York $4747
Discover Day Camp Christina Polleto in New York $4309
Yaron Werber of Ovid Therapeutics raised $3953 for ASF at the Brooklyn Rock n Roll 12 Marathon
Hauser Junior High School Fundraiser in Westchester New York $3535
Custom Harley Davidson Bike Show Noel Perez and Berto Castellanos in California $3360
Pardi Gras Promotion and Sales Proceeds $2500
Tierrarsquos Event $2435
Family Fun Day Michael Drzewiecki in New York $2338
The Hope Classic at Lower Merion High School in Medinah NY $2342
Run Like A Mother 5k Tiffany Cruikshank in Hinsdale Illinois $1880
Oakland Arsquos Fundraiser in California $1345
7th Street Sportsmen Club Fundraiser in Pennsylvania $1000
THANK YOU to all of the fundraisers who have brought in more than $100000 of donations in 2015 We are very excited at the possibilities and creativity our families will bring in 2016
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Summit4Angelman
Father to young boy with AS climbs Mt Kilimanjaro to raise awareness of ASFrom Kyle himself
Irsquom going to take 8 days to climb up the worldrsquos tallest freestanding mountain to raise awareness for Angelman syndrome and Irsquove realized during my training that I donrsquot think I can do it alone Of course Irsquom going up with a great group looking forward to helping the cause in any way they can but Irsquove found such strength in keeping focused on why Irsquom doing this and every time I ldquopicturerdquo my son Madden it keeps me going when I desperately want to quit or cut corners in training If I keep in mind how my son never quits and overcomes his challenges with a smile I realize this mountain isnrsquot quite as tall I as first thought The point ishellipwithout Madden this climb seems a lot more difficult Which got me thinking what if I have an army of Angels with me every step of the climb Irsquom asking you to send me a picture of your Angel so I can take them to the top of Kilimanjaro with me Each photo and story you send me will provide the strength I need to keep going when the air is thin the weather is cold and my head is pounding I will do everything in my power to get to the top with them My chances will be far better with each person I take up with me If I make it to the Summit I promise they will see the view with me at 19341 feet
Visit Kylersquos personal blog at wwwsummit4angelmancom to find out more about Kylersquos journey
How can you helpbull Share your personal Summit story of accomplishment
on Facebook and Twitter and include the hashtag Summit4Angelman
bull Introduce Angelman syndrome to new peoplehellipKylersquos goal is to raise awareness of AS and he wants to reach 19341mdashthatrsquos one new person for every foot that Mt Kilimanjaro is tall
bull Share a photo of your loved one with AS (send to kyrooneyoutlookcom) for Kyle to take to the top of Mt Kilimanjaro
Looks Whatrsquos Shouted From the Mountaintop Angelman Syndrome Awareness
ASF Communication Training Series
Having challenges with helping your loved one with AS better communicate We have the resource for you In collaboration with several AS communication experts the ASF has created a FREE communication resource that you can access AT ANY TIME the ASF Communication Training Series This Series takes all of the hours of great communication workshops and breaks them down into smaller digestible parts so that you and your individual with AS can reach herhis greatest communication success at any age Using web-based teaching the Series is designed to be sequential and you can join at any time and proceed through the training at your childrsquos pace of learning Click here for more and to access the schedule past webinar recordings and handouts
Meet the experts
ERIN SHELDON M EDErin earned her Masters of Education studying the learning characteristics of students with AS Erin works as an assistive technology consultant with a focus on supporting students with complex learning needs to access the general curriculum in inclusive classrooms She founded the Angelman Literacy
Project an initiative to support families and school teams to foster emergent literacy development in students with AS She presents professional development workshops and webinars across North America and Europe including at conferences such as Closing the Gap and ATIA and has authored manuals book chapters and journal articles
DR CAROLINE MUSSELWHITE CCC-SLPDr Musselwhite is an assistive technology specialist with more than 35 years of experience working with children and adolescents with significant disabilities in a variety of settings including Head Start developmental day programs homes and the public schools Dr
Musselwhite has written a number of textbooks and ldquohow-tordquo books on a range of topics and has also authored many books and software programs for youth with disabilities She has presented thousands of workshops throughout North and South America Australia Europe and Africa and is a founding member and Fellow of the International Society for Augmentative and Alternative Communication
MAUREEN NEVERS MS CCC-SLP LICENSED SPEECH-LANGUAGE PATHOLOGIST AUGMENTATIVE COMMUNICATION SPECIALISTMaureen earned a BS in Communication Disorders from the University of Massachusetts at Amherst in 1991 then earned a MS in Speech-Language
Pathology from the University of Vermont in 1993 Her graduate work included participation in a comprehensive training program in AAC She worked for Easter Seals in Massachusetts for eleven years before joining the Center on Disability and Community Inclusion at the University of Vermont eleven years ago She currently works as an Augmentative Communication Specialist with the Vermont I-Team where she is part of an interdisciplinary team that consults with school teams across the state to support individuals with complex communication needs
Communication training you can understand and use
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
MARY-LOUISE BERTRAMMary-Louise Bertram is a qualified Early Childhood Teacher from Perth Western Australia with special qualifications and training in the areas of communication sensory processing and literacy supports for children with complex disabilities Mary-Louise became involved with the AS community in 2007 while
teaching a class of six children four of whom had AS (all Del +) Since then Mary-Louise has worked with people with AS of all ages across Western Australia in the first statewide comprehensive AS-specific communication intervention of its kind She has supported families across the globe to advocate for their childrsquos right to high-quality communication and education intervention Mary-Louise currently works in private practice supporting individuals with complex disabilities (and their families) with communication and literacy
Families are also encouraged to support each other and share tips via the Seriesrsquo private ASF Communication Training Series Facebook group
Twenty years ago we never would have imagined that so many generous people like you would open their hearts to help those affected by AS Your generosity eases the financial and emotional burden on families by supporting our family resource program and has helped our researchers make significant breakthroughs in treatments and potential cures for AS Without you there would be no us We are forever grateful for your support
Click here to make a contribution to the ASFrsquos end-of-year appeal All donations are 100 tax deductible per IRS regulations
Itrsquos ALL because of YOU
WWWANGELMANTODAYCOM November December 2015
By Cass Gamero
My sons name is Alexander and he was
recently diagnosed in July 2015 Hes only
18 months old and is loved by all Anyone
who meets him cant help but be
memorized by his long eye lashes amp
beaming smile When you see him you
cant help but smile My son also has some
vision problems but is getting better He
loves his toy keys and could recognize his
bottle from anywhere Hes lovable
friendly joyful and bright
Angels in Action Celebrating the Abilities of our Angels
Gareth Edwards (Star Wars Director) acknowledges
The force is strong in the Angelman Alliance
It is often said that parents will do anything for their children A rare
disease called Angelman Syndrome is proving testimony to this fact
Driven by an unstoppable love for their children parent organisations
from 15 countries have formed an alliance to work together to progress
research that may help their children to speak run and live life to their
full potential As Gareth Edwards patron of the UK Charity that hosted
this yearsrsquo conference in Liverpool England said during his speech at
the conference ldquoAngels go further and beyondrdquo
With the support of ISIS pharmaceuticals recent findings by professor Art Beaudet (USA) are expected to
progress to clinical trials Results from other researchers in collaboration with pharmaceutical companies
also have promising results to improve the quality of life for children amp adults with Angelman Syndrome
Initially having to overcome language barriers cultural differences and different legal systems the parent
organisations created an international Alliance on Angelman Syndrome (ASA) to drive research forward
pooling resources and funds In the first two years over half a million eurorsquos (550000-) was raised with
more parent organisations worldwide continuing to join The parent organisations met this year in
Liverpool during the 50th anniversary of Angelman Syndrome At this conference representatives came
from England Ireland Belgium Netherlands Germany Austria France Italy Portugal Japan Israel
Hungary Poland Finland and Switzerland
As professor Ype Elgersma (NL) said ldquoThese are very exciting times because we might actually have the
possibility to reverse a severe genetic diseaserdquo Therefore the need to get things going is stronger than ever
within the Alliance and the need for more funding is evident Because in the end every parent wants their
child to be as happy and healthy as possible
Everything we do we do for our Angels wwwangelmanallianceor g
For information about the Alliance the research and other questions you can contact Betty Willemsen
bettywillemsenninafoundationeu
Dr Harry Angelman
1915 ndash 1996
El Dr Harry Angelman fue un meacutedico Ingleacutes quien
identificoacute lo que hoy en diacutea se llama Siacutendrome de
Angelman
Nacioacute en Birkenhead Inglaterra Le fascinaba el idioma
y la cultura de Italia
El fue el primero quien observoacute treacutes nintildeos no
relacionados quienes demostraban siacutentomas similares ndash
atrasos severos intelectuales un modo de andar que era
espasmoacutedico y riacutegido ausencia del hablar
convulsiones y una disposicioacuten contento
Luego duranted unas vacaciones en Italia descubrioacute
una pintura llamada ldquoUn Nintildeo con una Marionetardquo
creado por el artista del Renascimiento Giovanni
Francesco Caroto en el museo Castelvecchio en
Verona La pintura le hizo pensar en los nintildeos que eran
sus pacientes y le condujo a publicar un artiacuteculo
profesional en el antildeo 1965 que describiacutea lo que el
llamaba ldquoNintildeos Marionetasrdquo En aquel momento la
importancia de su artiacuteculo no fue reconocido como algo
importante
No pasoacute nada mas hasta Charles A Williams y Jaime L
Frias del departamento de Pediacuteatra Divisiacuteon de
Geneacutetica de la Universidad de Florida Colegio de
Medicina de Gainesville Florida sometieron un
artiacuteculo a la Revista Americana de Geneacutetica Meacutedica
explicando estudios de seacuteis pacientes comparando sus
datos con los de informes previos ndash incluyendo atrasos
intelectuales severos el andar como un ldquomarionetardquo
anormalidades cranio-faciales y espisodios frecuentes
de risas De repente se notoacute que eso era mucho maacutes
comuacuten de lo que anteriormente se creiacutea Ellos
propusieron ponerle el nombre de Siacutendrome de
Angelman en honor del Dr Harry Angelman
La Historia del Siacutendrome de Angelman (Spanish Translation)
Angelman Today
Gareth Edwards (Directeur de Star Wars) lrsquoaffirme la Force est avec lrsquoAngelman Syndrome Alliance (ASA)
On dit souvent que les parents feraient tout pour leurs enfants et crsquoest ce qui se veacuterifie agrave lrsquooccasion drsquoune maladie rare appeleacutee le syndrome drsquoAngelman Animeacutees drsquoun amour infini pour leurs enfants des organisations parentales de 15 pays ont formeacute une alliance dans le but de faire avancer la recherche qui permettra agrave ces enfants de parler courir et vivre leur vie pleinement Comme lrsquoaffirmait dans son intervention Gareth Edwards soutien de lrsquoassociation de bienfaisance anglaise qui accueillait cette anneacutee la confeacuterence internationale agrave Liverpool laquo Les Anges vont plus loin et au-delagrave raquo
De reacutecentes deacutecouvertes dues par le Professeur Art Beaudet (USA) avec le soutien des laboratoires pharmaceutiques ISIS vont conduire agrave des essais cliniques Drsquoautres chercheurs soutenus par des socieacuteteacutes pharmaceutiques ont obtenu des reacutesultats prometteurs pour ameacuteliorer la qualiteacute de vie des enfants et des adultes atteints du syndrome drsquoAngelman
Surmontant les obstacles dus aux langues aux diffeacuterences culturelles et leacutegales les organisations parentales ont creacuteeacute lrsquoAlliance du Syndrome drsquoAngelman (ASA) visant agrave faire progresser la recherche et agrave mettre en commun les ressources et les financements Dans les deux premiegraveres anneacutees 550 000 euro ont eacuteteacute reacuteunis et drsquoautres organisations venues du monde entier souhaitent srsquoy associer Cette anneacutee les organisations de parents se sont rencontreacutees agrave Liverpool dans le cadre du 50egraveme anniversaire de lrsquoidentification du syndrome Eacutetaient repreacutesenteacutes lrsquoAngleterre lrsquoIrlande la Belgique les Pays Bas lrsquoAllemagne lrsquoAutriche la France lrsquoItalie le Portugal le Japon Israeumll la Hongrie la Pologne la Finlande et la Suisse
Comme le disait le Professeur Ype Elgersma (NL) laquo Nous vivons des temps prometteurs car nous sommes en mesure drsquoinverser une grave maladie geacuteneacutetique raquo Crsquoest pourquoi il est de plus en plus neacutecessaire de renforcer notre action et de trouver drsquoautres financements Parce qursquoil est clair que chaque parent souhaite que son enfant vive heureux et en bonne santeacute
Tout ce que nous faisons nous le faisons pour nos Anges wwwangelmanallianceorg
Pour toute information sur lrsquoAlliance la recherche et drsquoautres questions vous pouvez contacter Betty Willemsen bettywillemsenninafoundationeu
Angelman Today
God only gives us what He is willing to walk us through
-Joell Gingrich Ketcham
ldquo ldquo
ldquo
Adding youtube video
platform to Angelman Today
Video content will include bull Interviews
bull Product Reviews
bull Latest Research
bull How To videos
bull Parent tips and interviews
bull Much more
Email Lizzieangelmantodaycom if you
would like to participate
Announcements
We are expanding Angelman Today to include a new
platform of video media
To do this we will be making some changes that will
include the publishing schedule for the online digital
magazine Starting in January 2016 we will start
publishing Angelman Today quarterly 4 information-
packed editions a year
Subscriptions of the online magazine will remain
FREE
Subscribing to the YouTube channel is also FREE
We welcome all Angelman foundations parents
care takers physicians and researchers to
contribute Deadlines are
bull December 10
bull March 10
bull June 10
bull September 10
Show your support for Angelman Today and subscribe
WWWANGELMANTODAYCOM November December 2015
Toby B Kroger in Kentucky Scotty at Wegmans in NY
There are many challenges that come along with being
a caretaker of an individual with special needs
including a task that for many may be simple a trip
that we all must do regularly which is shop for
groceries
The best inventions are usually created from a persons
desire to satisfy a need or to solve a problem they
encounter in their own life One set of parents did just
that Drew Ann and David Long have three children
Caroline is their middle child she was diagnosed with
Rett syndrome The challenge came when Drew Ann
went grocery shopping with her kids She had a
Making Shopping A Little
Easier This Holiday Season helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
toddler and Caroline in her wheelchair The problem
presented itself as in the form of a question ldquoHow
do you push a wheelchair and a shopping cartrdquo
Drew Ann had the answer She was able to vision the
cart and sat in her car and sketched it out on paper
She knew she was not the first to have this dilemma
nor would she be the last
Carolinersquos Carts can now be found at some select
retailers You can visit wwwcarolinescartcom to
find a location near you
Parents we need your help We at Angelman Today
are calling for action There are not enough stores
with Carolinersquos carts Parents it is up to us We are
the ones that need them so we have to be the ones to
request them at our local retailers Some stores like
Target Shoprite Publix Lucky and Wegmans are
starting to have them available If they are not
currently at a store near you just ask the manager
You will be helping not only your family but the
many other families that may not yet even know this
helpful cart exists
WWWANGELMANTODAYCOM November December 2015
Thank you A big thanks to all of the contributors that help bring you Angelman Today
Angelman Today Supporters
If I Need Help ndash wwwifineedhelporg
All of the Angelman and
Associated
Foundations
across the globe
Additional Contributors
Kat Adams
Maria Cano Moraleda
Erin Bates
Angelman Today is a lifestyle guide to achieving better health for individuals with Angelman Syndrome and their families It is written with your needs in mind but is not a substitute for consulting with your physician or other health care providers The publisher and authors are not responsible for any adverse effects or consequences resulting from the use of the suggestions products or procedures that appear on this website or online magazine All matters regarding your health should be supervised by a licensed health care physician Copyright 2014 Angelman Today LLC All rights reserved worldwide
CONTRIBUTORS
Marilyn Kennedy
Assistant Editor Marilynangelmantodaycom
Sybille Kraft Bellamy
Parent Expert in Nutrition
And LGIT diet FacebookcomAngelmanSyndromeDiet
STAY CONNECTED ON THE GO
DOWNLOAD THE NEW ISSUU APP TODAY ON GOOGLE PLAY
AND NOW IN THE APP STORE
Dr Harry Angelman
1915 ndash 1996
Dr Harry Angelman was an English physician
who identified what is now known as Angelman
Syndrome
He first observed three children who were not
related but showed similar symptoms of severe
intellectual delay stiff jerky gait lack of speech
seizures motor disorders and happy demeanors
Although Dr Angelman was born in Birkenhead
England he was an enthusiast for the language
and country of Italy And it was while vacationing
in Italy he observed an oil painting called A Boy
with a Puppet by the renaissance artist Giovanni
Francesco Caroto at the Castelvecchio museum in
Verona Reminded of the children hersquod observed
Dr Angelman published a paper in 1965 that
described what he called ldquopuppet childrenrdquo At
this time his paper was not immediately
recognized as important
It wasnrsquot until 1982 when Charles A Williams
and Jaime L Frias of the department of Pediatrics
Division of Genetics University of Florida
College of Medicine Gainesville submitted a
paper to the American Journal of Medical
Genetics reporting studies of six patients and
comparing their data to those from previous
reports - severe developmental delay ldquopuppet-
likerdquo gait craniofacial abnormalities and frequent
episodes of laughter- that it became clear the
syndrome was more common than previously
thought They proposed the name of this disorder
be changed to Angelman Syndrome
The History of Angelman Syndrome
Angelman Today
Books Recommended by Parents
Connect with us on
Thanks for your support
Please Share Angelman Today
wwwangelmantodaycom
By Kat Adams Melissa is 12 years old and has Angelman
syndrome UPD She loves to play games and
laugh at her big Brother Jacobs jokes she has a
wicked sense of humor
Melissa won the Child of courage award at an
event in her home town I was very proud that
her fellow citizens chose to recognize her daily
struggles and her massive achievements in this
way
Melissa experiences life in such a way that
every day is an adventure she brings so much
love and happiness into both mine and Jacobs
lives
We have set up a small Foundation in Melissas
name to help support research into a cure for
Angelman syndrome and have had many good
times with our fundraising events taking part
in things such as skydiving and even carrying
Melissa in a sedan chair for 5 miles
Life is never dull with a child like Melissa
Lots of tears along the way but much more
laughter
Angels in Action
Last year was such a success we are doing it again Enter a picture of your loved one
with Angelman Syndrome Get your friends and family voting and they could be on
the January cover of Angelman Today Watch our Facebook page for details
2 16
2014 Cover
2015 Cover
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
The Meerdo Family
Kathryn Matt and Stetson from Chip at AS event
Brian and Drew Fitzgerald annual Blarney CupYaron Werber
Because of you AS families benefit
THANK YOU to our phenomenal supporters this past yearHoly Cow Our AS friends and families have truly impressed our socks off this year Your creativity and dedication is shattering past records and touching lives deeply We at the ASF are humbled and honored to have had independent fundraisers raise more than $100000 for the AS community to date
Check out what just a few of our families have done in 2015
Family Fun Day - Michael Drzewiecki and company
Berto and Minnie with their daughter Pam
Annual Tractor Cruise - Horton Kansas
Because of you AS families benefit
THANK YOU to every individual and organization that played a role in these fundraisers either by spearheading attending or donating to these events
Blarney Cup Paddle Tournament The Fitzgeraldrsquos in Ohio $25450
Meerdo Annual Golf Tournament The Meerdorsquos in Utah $19980
Chip Away at AS Golf Tournament The Elyrsquos in Georgia $11683
Tractor Cruise The Olsenrsquos in Kansas $5350
Cure for the Angels Family Day Angelique Tuthill in New York $4747
Discover Day Camp Christina Polleto in New York $4309
Yaron Werber of Ovid Therapeutics raised $3953 for ASF at the Brooklyn Rock n Roll 12 Marathon
Hauser Junior High School Fundraiser in Westchester New York $3535
Custom Harley Davidson Bike Show Noel Perez and Berto Castellanos in California $3360
Pardi Gras Promotion and Sales Proceeds $2500
Tierrarsquos Event $2435
Family Fun Day Michael Drzewiecki in New York $2338
The Hope Classic at Lower Merion High School in Medinah NY $2342
Run Like A Mother 5k Tiffany Cruikshank in Hinsdale Illinois $1880
Oakland Arsquos Fundraiser in California $1345
7th Street Sportsmen Club Fundraiser in Pennsylvania $1000
THANK YOU to all of the fundraisers who have brought in more than $100000 of donations in 2015 We are very excited at the possibilities and creativity our families will bring in 2016
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Summit4Angelman
Father to young boy with AS climbs Mt Kilimanjaro to raise awareness of ASFrom Kyle himself
Irsquom going to take 8 days to climb up the worldrsquos tallest freestanding mountain to raise awareness for Angelman syndrome and Irsquove realized during my training that I donrsquot think I can do it alone Of course Irsquom going up with a great group looking forward to helping the cause in any way they can but Irsquove found such strength in keeping focused on why Irsquom doing this and every time I ldquopicturerdquo my son Madden it keeps me going when I desperately want to quit or cut corners in training If I keep in mind how my son never quits and overcomes his challenges with a smile I realize this mountain isnrsquot quite as tall I as first thought The point ishellipwithout Madden this climb seems a lot more difficult Which got me thinking what if I have an army of Angels with me every step of the climb Irsquom asking you to send me a picture of your Angel so I can take them to the top of Kilimanjaro with me Each photo and story you send me will provide the strength I need to keep going when the air is thin the weather is cold and my head is pounding I will do everything in my power to get to the top with them My chances will be far better with each person I take up with me If I make it to the Summit I promise they will see the view with me at 19341 feet
Visit Kylersquos personal blog at wwwsummit4angelmancom to find out more about Kylersquos journey
How can you helpbull Share your personal Summit story of accomplishment
on Facebook and Twitter and include the hashtag Summit4Angelman
bull Introduce Angelman syndrome to new peoplehellipKylersquos goal is to raise awareness of AS and he wants to reach 19341mdashthatrsquos one new person for every foot that Mt Kilimanjaro is tall
bull Share a photo of your loved one with AS (send to kyrooneyoutlookcom) for Kyle to take to the top of Mt Kilimanjaro
Looks Whatrsquos Shouted From the Mountaintop Angelman Syndrome Awareness
ASF Communication Training Series
Having challenges with helping your loved one with AS better communicate We have the resource for you In collaboration with several AS communication experts the ASF has created a FREE communication resource that you can access AT ANY TIME the ASF Communication Training Series This Series takes all of the hours of great communication workshops and breaks them down into smaller digestible parts so that you and your individual with AS can reach herhis greatest communication success at any age Using web-based teaching the Series is designed to be sequential and you can join at any time and proceed through the training at your childrsquos pace of learning Click here for more and to access the schedule past webinar recordings and handouts
Meet the experts
ERIN SHELDON M EDErin earned her Masters of Education studying the learning characteristics of students with AS Erin works as an assistive technology consultant with a focus on supporting students with complex learning needs to access the general curriculum in inclusive classrooms She founded the Angelman Literacy
Project an initiative to support families and school teams to foster emergent literacy development in students with AS She presents professional development workshops and webinars across North America and Europe including at conferences such as Closing the Gap and ATIA and has authored manuals book chapters and journal articles
DR CAROLINE MUSSELWHITE CCC-SLPDr Musselwhite is an assistive technology specialist with more than 35 years of experience working with children and adolescents with significant disabilities in a variety of settings including Head Start developmental day programs homes and the public schools Dr
Musselwhite has written a number of textbooks and ldquohow-tordquo books on a range of topics and has also authored many books and software programs for youth with disabilities She has presented thousands of workshops throughout North and South America Australia Europe and Africa and is a founding member and Fellow of the International Society for Augmentative and Alternative Communication
MAUREEN NEVERS MS CCC-SLP LICENSED SPEECH-LANGUAGE PATHOLOGIST AUGMENTATIVE COMMUNICATION SPECIALISTMaureen earned a BS in Communication Disorders from the University of Massachusetts at Amherst in 1991 then earned a MS in Speech-Language
Pathology from the University of Vermont in 1993 Her graduate work included participation in a comprehensive training program in AAC She worked for Easter Seals in Massachusetts for eleven years before joining the Center on Disability and Community Inclusion at the University of Vermont eleven years ago She currently works as an Augmentative Communication Specialist with the Vermont I-Team where she is part of an interdisciplinary team that consults with school teams across the state to support individuals with complex communication needs
Communication training you can understand and use
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
MARY-LOUISE BERTRAMMary-Louise Bertram is a qualified Early Childhood Teacher from Perth Western Australia with special qualifications and training in the areas of communication sensory processing and literacy supports for children with complex disabilities Mary-Louise became involved with the AS community in 2007 while
teaching a class of six children four of whom had AS (all Del +) Since then Mary-Louise has worked with people with AS of all ages across Western Australia in the first statewide comprehensive AS-specific communication intervention of its kind She has supported families across the globe to advocate for their childrsquos right to high-quality communication and education intervention Mary-Louise currently works in private practice supporting individuals with complex disabilities (and their families) with communication and literacy
Families are also encouraged to support each other and share tips via the Seriesrsquo private ASF Communication Training Series Facebook group
Twenty years ago we never would have imagined that so many generous people like you would open their hearts to help those affected by AS Your generosity eases the financial and emotional burden on families by supporting our family resource program and has helped our researchers make significant breakthroughs in treatments and potential cures for AS Without you there would be no us We are forever grateful for your support
Click here to make a contribution to the ASFrsquos end-of-year appeal All donations are 100 tax deductible per IRS regulations
Itrsquos ALL because of YOU
WWWANGELMANTODAYCOM November December 2015
By Cass Gamero
My sons name is Alexander and he was
recently diagnosed in July 2015 Hes only
18 months old and is loved by all Anyone
who meets him cant help but be
memorized by his long eye lashes amp
beaming smile When you see him you
cant help but smile My son also has some
vision problems but is getting better He
loves his toy keys and could recognize his
bottle from anywhere Hes lovable
friendly joyful and bright
Angels in Action Celebrating the Abilities of our Angels
Gareth Edwards (Star Wars Director) acknowledges
The force is strong in the Angelman Alliance
It is often said that parents will do anything for their children A rare
disease called Angelman Syndrome is proving testimony to this fact
Driven by an unstoppable love for their children parent organisations
from 15 countries have formed an alliance to work together to progress
research that may help their children to speak run and live life to their
full potential As Gareth Edwards patron of the UK Charity that hosted
this yearsrsquo conference in Liverpool England said during his speech at
the conference ldquoAngels go further and beyondrdquo
With the support of ISIS pharmaceuticals recent findings by professor Art Beaudet (USA) are expected to
progress to clinical trials Results from other researchers in collaboration with pharmaceutical companies
also have promising results to improve the quality of life for children amp adults with Angelman Syndrome
Initially having to overcome language barriers cultural differences and different legal systems the parent
organisations created an international Alliance on Angelman Syndrome (ASA) to drive research forward
pooling resources and funds In the first two years over half a million eurorsquos (550000-) was raised with
more parent organisations worldwide continuing to join The parent organisations met this year in
Liverpool during the 50th anniversary of Angelman Syndrome At this conference representatives came
from England Ireland Belgium Netherlands Germany Austria France Italy Portugal Japan Israel
Hungary Poland Finland and Switzerland
As professor Ype Elgersma (NL) said ldquoThese are very exciting times because we might actually have the
possibility to reverse a severe genetic diseaserdquo Therefore the need to get things going is stronger than ever
within the Alliance and the need for more funding is evident Because in the end every parent wants their
child to be as happy and healthy as possible
Everything we do we do for our Angels wwwangelmanallianceor g
For information about the Alliance the research and other questions you can contact Betty Willemsen
bettywillemsenninafoundationeu
Dr Harry Angelman
1915 ndash 1996
El Dr Harry Angelman fue un meacutedico Ingleacutes quien
identificoacute lo que hoy en diacutea se llama Siacutendrome de
Angelman
Nacioacute en Birkenhead Inglaterra Le fascinaba el idioma
y la cultura de Italia
El fue el primero quien observoacute treacutes nintildeos no
relacionados quienes demostraban siacutentomas similares ndash
atrasos severos intelectuales un modo de andar que era
espasmoacutedico y riacutegido ausencia del hablar
convulsiones y una disposicioacuten contento
Luego duranted unas vacaciones en Italia descubrioacute
una pintura llamada ldquoUn Nintildeo con una Marionetardquo
creado por el artista del Renascimiento Giovanni
Francesco Caroto en el museo Castelvecchio en
Verona La pintura le hizo pensar en los nintildeos que eran
sus pacientes y le condujo a publicar un artiacuteculo
profesional en el antildeo 1965 que describiacutea lo que el
llamaba ldquoNintildeos Marionetasrdquo En aquel momento la
importancia de su artiacuteculo no fue reconocido como algo
importante
No pasoacute nada mas hasta Charles A Williams y Jaime L
Frias del departamento de Pediacuteatra Divisiacuteon de
Geneacutetica de la Universidad de Florida Colegio de
Medicina de Gainesville Florida sometieron un
artiacuteculo a la Revista Americana de Geneacutetica Meacutedica
explicando estudios de seacuteis pacientes comparando sus
datos con los de informes previos ndash incluyendo atrasos
intelectuales severos el andar como un ldquomarionetardquo
anormalidades cranio-faciales y espisodios frecuentes
de risas De repente se notoacute que eso era mucho maacutes
comuacuten de lo que anteriormente se creiacutea Ellos
propusieron ponerle el nombre de Siacutendrome de
Angelman en honor del Dr Harry Angelman
La Historia del Siacutendrome de Angelman (Spanish Translation)
Angelman Today
Gareth Edwards (Directeur de Star Wars) lrsquoaffirme la Force est avec lrsquoAngelman Syndrome Alliance (ASA)
On dit souvent que les parents feraient tout pour leurs enfants et crsquoest ce qui se veacuterifie agrave lrsquooccasion drsquoune maladie rare appeleacutee le syndrome drsquoAngelman Animeacutees drsquoun amour infini pour leurs enfants des organisations parentales de 15 pays ont formeacute une alliance dans le but de faire avancer la recherche qui permettra agrave ces enfants de parler courir et vivre leur vie pleinement Comme lrsquoaffirmait dans son intervention Gareth Edwards soutien de lrsquoassociation de bienfaisance anglaise qui accueillait cette anneacutee la confeacuterence internationale agrave Liverpool laquo Les Anges vont plus loin et au-delagrave raquo
De reacutecentes deacutecouvertes dues par le Professeur Art Beaudet (USA) avec le soutien des laboratoires pharmaceutiques ISIS vont conduire agrave des essais cliniques Drsquoautres chercheurs soutenus par des socieacuteteacutes pharmaceutiques ont obtenu des reacutesultats prometteurs pour ameacuteliorer la qualiteacute de vie des enfants et des adultes atteints du syndrome drsquoAngelman
Surmontant les obstacles dus aux langues aux diffeacuterences culturelles et leacutegales les organisations parentales ont creacuteeacute lrsquoAlliance du Syndrome drsquoAngelman (ASA) visant agrave faire progresser la recherche et agrave mettre en commun les ressources et les financements Dans les deux premiegraveres anneacutees 550 000 euro ont eacuteteacute reacuteunis et drsquoautres organisations venues du monde entier souhaitent srsquoy associer Cette anneacutee les organisations de parents se sont rencontreacutees agrave Liverpool dans le cadre du 50egraveme anniversaire de lrsquoidentification du syndrome Eacutetaient repreacutesenteacutes lrsquoAngleterre lrsquoIrlande la Belgique les Pays Bas lrsquoAllemagne lrsquoAutriche la France lrsquoItalie le Portugal le Japon Israeumll la Hongrie la Pologne la Finlande et la Suisse
Comme le disait le Professeur Ype Elgersma (NL) laquo Nous vivons des temps prometteurs car nous sommes en mesure drsquoinverser une grave maladie geacuteneacutetique raquo Crsquoest pourquoi il est de plus en plus neacutecessaire de renforcer notre action et de trouver drsquoautres financements Parce qursquoil est clair que chaque parent souhaite que son enfant vive heureux et en bonne santeacute
Tout ce que nous faisons nous le faisons pour nos Anges wwwangelmanallianceorg
Pour toute information sur lrsquoAlliance la recherche et drsquoautres questions vous pouvez contacter Betty Willemsen bettywillemsenninafoundationeu
Angelman Today
God only gives us what He is willing to walk us through
-Joell Gingrich Ketcham
ldquo ldquo
ldquo
Adding youtube video
platform to Angelman Today
Video content will include bull Interviews
bull Product Reviews
bull Latest Research
bull How To videos
bull Parent tips and interviews
bull Much more
Email Lizzieangelmantodaycom if you
would like to participate
Announcements
We are expanding Angelman Today to include a new
platform of video media
To do this we will be making some changes that will
include the publishing schedule for the online digital
magazine Starting in January 2016 we will start
publishing Angelman Today quarterly 4 information-
packed editions a year
Subscriptions of the online magazine will remain
FREE
Subscribing to the YouTube channel is also FREE
We welcome all Angelman foundations parents
care takers physicians and researchers to
contribute Deadlines are
bull December 10
bull March 10
bull June 10
bull September 10
Show your support for Angelman Today and subscribe
WWWANGELMANTODAYCOM November December 2015
Toby B Kroger in Kentucky Scotty at Wegmans in NY
There are many challenges that come along with being
a caretaker of an individual with special needs
including a task that for many may be simple a trip
that we all must do regularly which is shop for
groceries
The best inventions are usually created from a persons
desire to satisfy a need or to solve a problem they
encounter in their own life One set of parents did just
that Drew Ann and David Long have three children
Caroline is their middle child she was diagnosed with
Rett syndrome The challenge came when Drew Ann
went grocery shopping with her kids She had a
Making Shopping A Little
Easier This Holiday Season helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
toddler and Caroline in her wheelchair The problem
presented itself as in the form of a question ldquoHow
do you push a wheelchair and a shopping cartrdquo
Drew Ann had the answer She was able to vision the
cart and sat in her car and sketched it out on paper
She knew she was not the first to have this dilemma
nor would she be the last
Carolinersquos Carts can now be found at some select
retailers You can visit wwwcarolinescartcom to
find a location near you
Parents we need your help We at Angelman Today
are calling for action There are not enough stores
with Carolinersquos carts Parents it is up to us We are
the ones that need them so we have to be the ones to
request them at our local retailers Some stores like
Target Shoprite Publix Lucky and Wegmans are
starting to have them available If they are not
currently at a store near you just ask the manager
You will be helping not only your family but the
many other families that may not yet even know this
helpful cart exists
WWWANGELMANTODAYCOM November December 2015
Thank you A big thanks to all of the contributors that help bring you Angelman Today
Angelman Today Supporters
If I Need Help ndash wwwifineedhelporg
All of the Angelman and
Associated
Foundations
across the globe
Additional Contributors
Kat Adams
Maria Cano Moraleda
Erin Bates
Angelman Today is a lifestyle guide to achieving better health for individuals with Angelman Syndrome and their families It is written with your needs in mind but is not a substitute for consulting with your physician or other health care providers The publisher and authors are not responsible for any adverse effects or consequences resulting from the use of the suggestions products or procedures that appear on this website or online magazine All matters regarding your health should be supervised by a licensed health care physician Copyright 2014 Angelman Today LLC All rights reserved worldwide
CONTRIBUTORS
Marilyn Kennedy
Assistant Editor Marilynangelmantodaycom
Sybille Kraft Bellamy
Parent Expert in Nutrition
And LGIT diet FacebookcomAngelmanSyndromeDiet
STAY CONNECTED ON THE GO
DOWNLOAD THE NEW ISSUU APP TODAY ON GOOGLE PLAY
AND NOW IN THE APP STORE
Dr Harry Angelman
1915 ndash 1996
Dr Harry Angelman was an English physician
who identified what is now known as Angelman
Syndrome
He first observed three children who were not
related but showed similar symptoms of severe
intellectual delay stiff jerky gait lack of speech
seizures motor disorders and happy demeanors
Although Dr Angelman was born in Birkenhead
England he was an enthusiast for the language
and country of Italy And it was while vacationing
in Italy he observed an oil painting called A Boy
with a Puppet by the renaissance artist Giovanni
Francesco Caroto at the Castelvecchio museum in
Verona Reminded of the children hersquod observed
Dr Angelman published a paper in 1965 that
described what he called ldquopuppet childrenrdquo At
this time his paper was not immediately
recognized as important
It wasnrsquot until 1982 when Charles A Williams
and Jaime L Frias of the department of Pediatrics
Division of Genetics University of Florida
College of Medicine Gainesville submitted a
paper to the American Journal of Medical
Genetics reporting studies of six patients and
comparing their data to those from previous
reports - severe developmental delay ldquopuppet-
likerdquo gait craniofacial abnormalities and frequent
episodes of laughter- that it became clear the
syndrome was more common than previously
thought They proposed the name of this disorder
be changed to Angelman Syndrome
The History of Angelman Syndrome
Angelman Today
Books Recommended by Parents
Connect with us on
Thanks for your support
Please Share Angelman Today
wwwangelmantodaycom
Last year was such a success we are doing it again Enter a picture of your loved one
with Angelman Syndrome Get your friends and family voting and they could be on
the January cover of Angelman Today Watch our Facebook page for details
2 16
2014 Cover
2015 Cover
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
The Meerdo Family
Kathryn Matt and Stetson from Chip at AS event
Brian and Drew Fitzgerald annual Blarney CupYaron Werber
Because of you AS families benefit
THANK YOU to our phenomenal supporters this past yearHoly Cow Our AS friends and families have truly impressed our socks off this year Your creativity and dedication is shattering past records and touching lives deeply We at the ASF are humbled and honored to have had independent fundraisers raise more than $100000 for the AS community to date
Check out what just a few of our families have done in 2015
Family Fun Day - Michael Drzewiecki and company
Berto and Minnie with their daughter Pam
Annual Tractor Cruise - Horton Kansas
Because of you AS families benefit
THANK YOU to every individual and organization that played a role in these fundraisers either by spearheading attending or donating to these events
Blarney Cup Paddle Tournament The Fitzgeraldrsquos in Ohio $25450
Meerdo Annual Golf Tournament The Meerdorsquos in Utah $19980
Chip Away at AS Golf Tournament The Elyrsquos in Georgia $11683
Tractor Cruise The Olsenrsquos in Kansas $5350
Cure for the Angels Family Day Angelique Tuthill in New York $4747
Discover Day Camp Christina Polleto in New York $4309
Yaron Werber of Ovid Therapeutics raised $3953 for ASF at the Brooklyn Rock n Roll 12 Marathon
Hauser Junior High School Fundraiser in Westchester New York $3535
Custom Harley Davidson Bike Show Noel Perez and Berto Castellanos in California $3360
Pardi Gras Promotion and Sales Proceeds $2500
Tierrarsquos Event $2435
Family Fun Day Michael Drzewiecki in New York $2338
The Hope Classic at Lower Merion High School in Medinah NY $2342
Run Like A Mother 5k Tiffany Cruikshank in Hinsdale Illinois $1880
Oakland Arsquos Fundraiser in California $1345
7th Street Sportsmen Club Fundraiser in Pennsylvania $1000
THANK YOU to all of the fundraisers who have brought in more than $100000 of donations in 2015 We are very excited at the possibilities and creativity our families will bring in 2016
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Summit4Angelman
Father to young boy with AS climbs Mt Kilimanjaro to raise awareness of ASFrom Kyle himself
Irsquom going to take 8 days to climb up the worldrsquos tallest freestanding mountain to raise awareness for Angelman syndrome and Irsquove realized during my training that I donrsquot think I can do it alone Of course Irsquom going up with a great group looking forward to helping the cause in any way they can but Irsquove found such strength in keeping focused on why Irsquom doing this and every time I ldquopicturerdquo my son Madden it keeps me going when I desperately want to quit or cut corners in training If I keep in mind how my son never quits and overcomes his challenges with a smile I realize this mountain isnrsquot quite as tall I as first thought The point ishellipwithout Madden this climb seems a lot more difficult Which got me thinking what if I have an army of Angels with me every step of the climb Irsquom asking you to send me a picture of your Angel so I can take them to the top of Kilimanjaro with me Each photo and story you send me will provide the strength I need to keep going when the air is thin the weather is cold and my head is pounding I will do everything in my power to get to the top with them My chances will be far better with each person I take up with me If I make it to the Summit I promise they will see the view with me at 19341 feet
Visit Kylersquos personal blog at wwwsummit4angelmancom to find out more about Kylersquos journey
How can you helpbull Share your personal Summit story of accomplishment
on Facebook and Twitter and include the hashtag Summit4Angelman
bull Introduce Angelman syndrome to new peoplehellipKylersquos goal is to raise awareness of AS and he wants to reach 19341mdashthatrsquos one new person for every foot that Mt Kilimanjaro is tall
bull Share a photo of your loved one with AS (send to kyrooneyoutlookcom) for Kyle to take to the top of Mt Kilimanjaro
Looks Whatrsquos Shouted From the Mountaintop Angelman Syndrome Awareness
ASF Communication Training Series
Having challenges with helping your loved one with AS better communicate We have the resource for you In collaboration with several AS communication experts the ASF has created a FREE communication resource that you can access AT ANY TIME the ASF Communication Training Series This Series takes all of the hours of great communication workshops and breaks them down into smaller digestible parts so that you and your individual with AS can reach herhis greatest communication success at any age Using web-based teaching the Series is designed to be sequential and you can join at any time and proceed through the training at your childrsquos pace of learning Click here for more and to access the schedule past webinar recordings and handouts
Meet the experts
ERIN SHELDON M EDErin earned her Masters of Education studying the learning characteristics of students with AS Erin works as an assistive technology consultant with a focus on supporting students with complex learning needs to access the general curriculum in inclusive classrooms She founded the Angelman Literacy
Project an initiative to support families and school teams to foster emergent literacy development in students with AS She presents professional development workshops and webinars across North America and Europe including at conferences such as Closing the Gap and ATIA and has authored manuals book chapters and journal articles
DR CAROLINE MUSSELWHITE CCC-SLPDr Musselwhite is an assistive technology specialist with more than 35 years of experience working with children and adolescents with significant disabilities in a variety of settings including Head Start developmental day programs homes and the public schools Dr
Musselwhite has written a number of textbooks and ldquohow-tordquo books on a range of topics and has also authored many books and software programs for youth with disabilities She has presented thousands of workshops throughout North and South America Australia Europe and Africa and is a founding member and Fellow of the International Society for Augmentative and Alternative Communication
MAUREEN NEVERS MS CCC-SLP LICENSED SPEECH-LANGUAGE PATHOLOGIST AUGMENTATIVE COMMUNICATION SPECIALISTMaureen earned a BS in Communication Disorders from the University of Massachusetts at Amherst in 1991 then earned a MS in Speech-Language
Pathology from the University of Vermont in 1993 Her graduate work included participation in a comprehensive training program in AAC She worked for Easter Seals in Massachusetts for eleven years before joining the Center on Disability and Community Inclusion at the University of Vermont eleven years ago She currently works as an Augmentative Communication Specialist with the Vermont I-Team where she is part of an interdisciplinary team that consults with school teams across the state to support individuals with complex communication needs
Communication training you can understand and use
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
MARY-LOUISE BERTRAMMary-Louise Bertram is a qualified Early Childhood Teacher from Perth Western Australia with special qualifications and training in the areas of communication sensory processing and literacy supports for children with complex disabilities Mary-Louise became involved with the AS community in 2007 while
teaching a class of six children four of whom had AS (all Del +) Since then Mary-Louise has worked with people with AS of all ages across Western Australia in the first statewide comprehensive AS-specific communication intervention of its kind She has supported families across the globe to advocate for their childrsquos right to high-quality communication and education intervention Mary-Louise currently works in private practice supporting individuals with complex disabilities (and their families) with communication and literacy
Families are also encouraged to support each other and share tips via the Seriesrsquo private ASF Communication Training Series Facebook group
Twenty years ago we never would have imagined that so many generous people like you would open their hearts to help those affected by AS Your generosity eases the financial and emotional burden on families by supporting our family resource program and has helped our researchers make significant breakthroughs in treatments and potential cures for AS Without you there would be no us We are forever grateful for your support
Click here to make a contribution to the ASFrsquos end-of-year appeal All donations are 100 tax deductible per IRS regulations
Itrsquos ALL because of YOU
WWWANGELMANTODAYCOM November December 2015
By Cass Gamero
My sons name is Alexander and he was
recently diagnosed in July 2015 Hes only
18 months old and is loved by all Anyone
who meets him cant help but be
memorized by his long eye lashes amp
beaming smile When you see him you
cant help but smile My son also has some
vision problems but is getting better He
loves his toy keys and could recognize his
bottle from anywhere Hes lovable
friendly joyful and bright
Angels in Action Celebrating the Abilities of our Angels
Gareth Edwards (Star Wars Director) acknowledges
The force is strong in the Angelman Alliance
It is often said that parents will do anything for their children A rare
disease called Angelman Syndrome is proving testimony to this fact
Driven by an unstoppable love for their children parent organisations
from 15 countries have formed an alliance to work together to progress
research that may help their children to speak run and live life to their
full potential As Gareth Edwards patron of the UK Charity that hosted
this yearsrsquo conference in Liverpool England said during his speech at
the conference ldquoAngels go further and beyondrdquo
With the support of ISIS pharmaceuticals recent findings by professor Art Beaudet (USA) are expected to
progress to clinical trials Results from other researchers in collaboration with pharmaceutical companies
also have promising results to improve the quality of life for children amp adults with Angelman Syndrome
Initially having to overcome language barriers cultural differences and different legal systems the parent
organisations created an international Alliance on Angelman Syndrome (ASA) to drive research forward
pooling resources and funds In the first two years over half a million eurorsquos (550000-) was raised with
more parent organisations worldwide continuing to join The parent organisations met this year in
Liverpool during the 50th anniversary of Angelman Syndrome At this conference representatives came
from England Ireland Belgium Netherlands Germany Austria France Italy Portugal Japan Israel
Hungary Poland Finland and Switzerland
As professor Ype Elgersma (NL) said ldquoThese are very exciting times because we might actually have the
possibility to reverse a severe genetic diseaserdquo Therefore the need to get things going is stronger than ever
within the Alliance and the need for more funding is evident Because in the end every parent wants their
child to be as happy and healthy as possible
Everything we do we do for our Angels wwwangelmanallianceor g
For information about the Alliance the research and other questions you can contact Betty Willemsen
bettywillemsenninafoundationeu
Dr Harry Angelman
1915 ndash 1996
El Dr Harry Angelman fue un meacutedico Ingleacutes quien
identificoacute lo que hoy en diacutea se llama Siacutendrome de
Angelman
Nacioacute en Birkenhead Inglaterra Le fascinaba el idioma
y la cultura de Italia
El fue el primero quien observoacute treacutes nintildeos no
relacionados quienes demostraban siacutentomas similares ndash
atrasos severos intelectuales un modo de andar que era
espasmoacutedico y riacutegido ausencia del hablar
convulsiones y una disposicioacuten contento
Luego duranted unas vacaciones en Italia descubrioacute
una pintura llamada ldquoUn Nintildeo con una Marionetardquo
creado por el artista del Renascimiento Giovanni
Francesco Caroto en el museo Castelvecchio en
Verona La pintura le hizo pensar en los nintildeos que eran
sus pacientes y le condujo a publicar un artiacuteculo
profesional en el antildeo 1965 que describiacutea lo que el
llamaba ldquoNintildeos Marionetasrdquo En aquel momento la
importancia de su artiacuteculo no fue reconocido como algo
importante
No pasoacute nada mas hasta Charles A Williams y Jaime L
Frias del departamento de Pediacuteatra Divisiacuteon de
Geneacutetica de la Universidad de Florida Colegio de
Medicina de Gainesville Florida sometieron un
artiacuteculo a la Revista Americana de Geneacutetica Meacutedica
explicando estudios de seacuteis pacientes comparando sus
datos con los de informes previos ndash incluyendo atrasos
intelectuales severos el andar como un ldquomarionetardquo
anormalidades cranio-faciales y espisodios frecuentes
de risas De repente se notoacute que eso era mucho maacutes
comuacuten de lo que anteriormente se creiacutea Ellos
propusieron ponerle el nombre de Siacutendrome de
Angelman en honor del Dr Harry Angelman
La Historia del Siacutendrome de Angelman (Spanish Translation)
Angelman Today
Gareth Edwards (Directeur de Star Wars) lrsquoaffirme la Force est avec lrsquoAngelman Syndrome Alliance (ASA)
On dit souvent que les parents feraient tout pour leurs enfants et crsquoest ce qui se veacuterifie agrave lrsquooccasion drsquoune maladie rare appeleacutee le syndrome drsquoAngelman Animeacutees drsquoun amour infini pour leurs enfants des organisations parentales de 15 pays ont formeacute une alliance dans le but de faire avancer la recherche qui permettra agrave ces enfants de parler courir et vivre leur vie pleinement Comme lrsquoaffirmait dans son intervention Gareth Edwards soutien de lrsquoassociation de bienfaisance anglaise qui accueillait cette anneacutee la confeacuterence internationale agrave Liverpool laquo Les Anges vont plus loin et au-delagrave raquo
De reacutecentes deacutecouvertes dues par le Professeur Art Beaudet (USA) avec le soutien des laboratoires pharmaceutiques ISIS vont conduire agrave des essais cliniques Drsquoautres chercheurs soutenus par des socieacuteteacutes pharmaceutiques ont obtenu des reacutesultats prometteurs pour ameacuteliorer la qualiteacute de vie des enfants et des adultes atteints du syndrome drsquoAngelman
Surmontant les obstacles dus aux langues aux diffeacuterences culturelles et leacutegales les organisations parentales ont creacuteeacute lrsquoAlliance du Syndrome drsquoAngelman (ASA) visant agrave faire progresser la recherche et agrave mettre en commun les ressources et les financements Dans les deux premiegraveres anneacutees 550 000 euro ont eacuteteacute reacuteunis et drsquoautres organisations venues du monde entier souhaitent srsquoy associer Cette anneacutee les organisations de parents se sont rencontreacutees agrave Liverpool dans le cadre du 50egraveme anniversaire de lrsquoidentification du syndrome Eacutetaient repreacutesenteacutes lrsquoAngleterre lrsquoIrlande la Belgique les Pays Bas lrsquoAllemagne lrsquoAutriche la France lrsquoItalie le Portugal le Japon Israeumll la Hongrie la Pologne la Finlande et la Suisse
Comme le disait le Professeur Ype Elgersma (NL) laquo Nous vivons des temps prometteurs car nous sommes en mesure drsquoinverser une grave maladie geacuteneacutetique raquo Crsquoest pourquoi il est de plus en plus neacutecessaire de renforcer notre action et de trouver drsquoautres financements Parce qursquoil est clair que chaque parent souhaite que son enfant vive heureux et en bonne santeacute
Tout ce que nous faisons nous le faisons pour nos Anges wwwangelmanallianceorg
Pour toute information sur lrsquoAlliance la recherche et drsquoautres questions vous pouvez contacter Betty Willemsen bettywillemsenninafoundationeu
Angelman Today
God only gives us what He is willing to walk us through
-Joell Gingrich Ketcham
ldquo ldquo
ldquo
Adding youtube video
platform to Angelman Today
Video content will include bull Interviews
bull Product Reviews
bull Latest Research
bull How To videos
bull Parent tips and interviews
bull Much more
Email Lizzieangelmantodaycom if you
would like to participate
Announcements
We are expanding Angelman Today to include a new
platform of video media
To do this we will be making some changes that will
include the publishing schedule for the online digital
magazine Starting in January 2016 we will start
publishing Angelman Today quarterly 4 information-
packed editions a year
Subscriptions of the online magazine will remain
FREE
Subscribing to the YouTube channel is also FREE
We welcome all Angelman foundations parents
care takers physicians and researchers to
contribute Deadlines are
bull December 10
bull March 10
bull June 10
bull September 10
Show your support for Angelman Today and subscribe
WWWANGELMANTODAYCOM November December 2015
Toby B Kroger in Kentucky Scotty at Wegmans in NY
There are many challenges that come along with being
a caretaker of an individual with special needs
including a task that for many may be simple a trip
that we all must do regularly which is shop for
groceries
The best inventions are usually created from a persons
desire to satisfy a need or to solve a problem they
encounter in their own life One set of parents did just
that Drew Ann and David Long have three children
Caroline is their middle child she was diagnosed with
Rett syndrome The challenge came when Drew Ann
went grocery shopping with her kids She had a
Making Shopping A Little
Easier This Holiday Season helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
toddler and Caroline in her wheelchair The problem
presented itself as in the form of a question ldquoHow
do you push a wheelchair and a shopping cartrdquo
Drew Ann had the answer She was able to vision the
cart and sat in her car and sketched it out on paper
She knew she was not the first to have this dilemma
nor would she be the last
Carolinersquos Carts can now be found at some select
retailers You can visit wwwcarolinescartcom to
find a location near you
Parents we need your help We at Angelman Today
are calling for action There are not enough stores
with Carolinersquos carts Parents it is up to us We are
the ones that need them so we have to be the ones to
request them at our local retailers Some stores like
Target Shoprite Publix Lucky and Wegmans are
starting to have them available If they are not
currently at a store near you just ask the manager
You will be helping not only your family but the
many other families that may not yet even know this
helpful cart exists
WWWANGELMANTODAYCOM November December 2015
Thank you A big thanks to all of the contributors that help bring you Angelman Today
Angelman Today Supporters
If I Need Help ndash wwwifineedhelporg
All of the Angelman and
Associated
Foundations
across the globe
Additional Contributors
Kat Adams
Maria Cano Moraleda
Erin Bates
Angelman Today is a lifestyle guide to achieving better health for individuals with Angelman Syndrome and their families It is written with your needs in mind but is not a substitute for consulting with your physician or other health care providers The publisher and authors are not responsible for any adverse effects or consequences resulting from the use of the suggestions products or procedures that appear on this website or online magazine All matters regarding your health should be supervised by a licensed health care physician Copyright 2014 Angelman Today LLC All rights reserved worldwide
CONTRIBUTORS
Marilyn Kennedy
Assistant Editor Marilynangelmantodaycom
Sybille Kraft Bellamy
Parent Expert in Nutrition
And LGIT diet FacebookcomAngelmanSyndromeDiet
STAY CONNECTED ON THE GO
DOWNLOAD THE NEW ISSUU APP TODAY ON GOOGLE PLAY
AND NOW IN THE APP STORE
Dr Harry Angelman
1915 ndash 1996
Dr Harry Angelman was an English physician
who identified what is now known as Angelman
Syndrome
He first observed three children who were not
related but showed similar symptoms of severe
intellectual delay stiff jerky gait lack of speech
seizures motor disorders and happy demeanors
Although Dr Angelman was born in Birkenhead
England he was an enthusiast for the language
and country of Italy And it was while vacationing
in Italy he observed an oil painting called A Boy
with a Puppet by the renaissance artist Giovanni
Francesco Caroto at the Castelvecchio museum in
Verona Reminded of the children hersquod observed
Dr Angelman published a paper in 1965 that
described what he called ldquopuppet childrenrdquo At
this time his paper was not immediately
recognized as important
It wasnrsquot until 1982 when Charles A Williams
and Jaime L Frias of the department of Pediatrics
Division of Genetics University of Florida
College of Medicine Gainesville submitted a
paper to the American Journal of Medical
Genetics reporting studies of six patients and
comparing their data to those from previous
reports - severe developmental delay ldquopuppet-
likerdquo gait craniofacial abnormalities and frequent
episodes of laughter- that it became clear the
syndrome was more common than previously
thought They proposed the name of this disorder
be changed to Angelman Syndrome
The History of Angelman Syndrome
Angelman Today
Books Recommended by Parents
Connect with us on
Thanks for your support
Please Share Angelman Today
wwwangelmantodaycom
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
The Meerdo Family
Kathryn Matt and Stetson from Chip at AS event
Brian and Drew Fitzgerald annual Blarney CupYaron Werber
Because of you AS families benefit
THANK YOU to our phenomenal supporters this past yearHoly Cow Our AS friends and families have truly impressed our socks off this year Your creativity and dedication is shattering past records and touching lives deeply We at the ASF are humbled and honored to have had independent fundraisers raise more than $100000 for the AS community to date
Check out what just a few of our families have done in 2015
Family Fun Day - Michael Drzewiecki and company
Berto and Minnie with their daughter Pam
Annual Tractor Cruise - Horton Kansas
Because of you AS families benefit
THANK YOU to every individual and organization that played a role in these fundraisers either by spearheading attending or donating to these events
Blarney Cup Paddle Tournament The Fitzgeraldrsquos in Ohio $25450
Meerdo Annual Golf Tournament The Meerdorsquos in Utah $19980
Chip Away at AS Golf Tournament The Elyrsquos in Georgia $11683
Tractor Cruise The Olsenrsquos in Kansas $5350
Cure for the Angels Family Day Angelique Tuthill in New York $4747
Discover Day Camp Christina Polleto in New York $4309
Yaron Werber of Ovid Therapeutics raised $3953 for ASF at the Brooklyn Rock n Roll 12 Marathon
Hauser Junior High School Fundraiser in Westchester New York $3535
Custom Harley Davidson Bike Show Noel Perez and Berto Castellanos in California $3360
Pardi Gras Promotion and Sales Proceeds $2500
Tierrarsquos Event $2435
Family Fun Day Michael Drzewiecki in New York $2338
The Hope Classic at Lower Merion High School in Medinah NY $2342
Run Like A Mother 5k Tiffany Cruikshank in Hinsdale Illinois $1880
Oakland Arsquos Fundraiser in California $1345
7th Street Sportsmen Club Fundraiser in Pennsylvania $1000
THANK YOU to all of the fundraisers who have brought in more than $100000 of donations in 2015 We are very excited at the possibilities and creativity our families will bring in 2016
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Summit4Angelman
Father to young boy with AS climbs Mt Kilimanjaro to raise awareness of ASFrom Kyle himself
Irsquom going to take 8 days to climb up the worldrsquos tallest freestanding mountain to raise awareness for Angelman syndrome and Irsquove realized during my training that I donrsquot think I can do it alone Of course Irsquom going up with a great group looking forward to helping the cause in any way they can but Irsquove found such strength in keeping focused on why Irsquom doing this and every time I ldquopicturerdquo my son Madden it keeps me going when I desperately want to quit or cut corners in training If I keep in mind how my son never quits and overcomes his challenges with a smile I realize this mountain isnrsquot quite as tall I as first thought The point ishellipwithout Madden this climb seems a lot more difficult Which got me thinking what if I have an army of Angels with me every step of the climb Irsquom asking you to send me a picture of your Angel so I can take them to the top of Kilimanjaro with me Each photo and story you send me will provide the strength I need to keep going when the air is thin the weather is cold and my head is pounding I will do everything in my power to get to the top with them My chances will be far better with each person I take up with me If I make it to the Summit I promise they will see the view with me at 19341 feet
Visit Kylersquos personal blog at wwwsummit4angelmancom to find out more about Kylersquos journey
How can you helpbull Share your personal Summit story of accomplishment
on Facebook and Twitter and include the hashtag Summit4Angelman
bull Introduce Angelman syndrome to new peoplehellipKylersquos goal is to raise awareness of AS and he wants to reach 19341mdashthatrsquos one new person for every foot that Mt Kilimanjaro is tall
bull Share a photo of your loved one with AS (send to kyrooneyoutlookcom) for Kyle to take to the top of Mt Kilimanjaro
Looks Whatrsquos Shouted From the Mountaintop Angelman Syndrome Awareness
ASF Communication Training Series
Having challenges with helping your loved one with AS better communicate We have the resource for you In collaboration with several AS communication experts the ASF has created a FREE communication resource that you can access AT ANY TIME the ASF Communication Training Series This Series takes all of the hours of great communication workshops and breaks them down into smaller digestible parts so that you and your individual with AS can reach herhis greatest communication success at any age Using web-based teaching the Series is designed to be sequential and you can join at any time and proceed through the training at your childrsquos pace of learning Click here for more and to access the schedule past webinar recordings and handouts
Meet the experts
ERIN SHELDON M EDErin earned her Masters of Education studying the learning characteristics of students with AS Erin works as an assistive technology consultant with a focus on supporting students with complex learning needs to access the general curriculum in inclusive classrooms She founded the Angelman Literacy
Project an initiative to support families and school teams to foster emergent literacy development in students with AS She presents professional development workshops and webinars across North America and Europe including at conferences such as Closing the Gap and ATIA and has authored manuals book chapters and journal articles
DR CAROLINE MUSSELWHITE CCC-SLPDr Musselwhite is an assistive technology specialist with more than 35 years of experience working with children and adolescents with significant disabilities in a variety of settings including Head Start developmental day programs homes and the public schools Dr
Musselwhite has written a number of textbooks and ldquohow-tordquo books on a range of topics and has also authored many books and software programs for youth with disabilities She has presented thousands of workshops throughout North and South America Australia Europe and Africa and is a founding member and Fellow of the International Society for Augmentative and Alternative Communication
MAUREEN NEVERS MS CCC-SLP LICENSED SPEECH-LANGUAGE PATHOLOGIST AUGMENTATIVE COMMUNICATION SPECIALISTMaureen earned a BS in Communication Disorders from the University of Massachusetts at Amherst in 1991 then earned a MS in Speech-Language
Pathology from the University of Vermont in 1993 Her graduate work included participation in a comprehensive training program in AAC She worked for Easter Seals in Massachusetts for eleven years before joining the Center on Disability and Community Inclusion at the University of Vermont eleven years ago She currently works as an Augmentative Communication Specialist with the Vermont I-Team where she is part of an interdisciplinary team that consults with school teams across the state to support individuals with complex communication needs
Communication training you can understand and use
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
MARY-LOUISE BERTRAMMary-Louise Bertram is a qualified Early Childhood Teacher from Perth Western Australia with special qualifications and training in the areas of communication sensory processing and literacy supports for children with complex disabilities Mary-Louise became involved with the AS community in 2007 while
teaching a class of six children four of whom had AS (all Del +) Since then Mary-Louise has worked with people with AS of all ages across Western Australia in the first statewide comprehensive AS-specific communication intervention of its kind She has supported families across the globe to advocate for their childrsquos right to high-quality communication and education intervention Mary-Louise currently works in private practice supporting individuals with complex disabilities (and their families) with communication and literacy
Families are also encouraged to support each other and share tips via the Seriesrsquo private ASF Communication Training Series Facebook group
Twenty years ago we never would have imagined that so many generous people like you would open their hearts to help those affected by AS Your generosity eases the financial and emotional burden on families by supporting our family resource program and has helped our researchers make significant breakthroughs in treatments and potential cures for AS Without you there would be no us We are forever grateful for your support
Click here to make a contribution to the ASFrsquos end-of-year appeal All donations are 100 tax deductible per IRS regulations
Itrsquos ALL because of YOU
WWWANGELMANTODAYCOM November December 2015
By Cass Gamero
My sons name is Alexander and he was
recently diagnosed in July 2015 Hes only
18 months old and is loved by all Anyone
who meets him cant help but be
memorized by his long eye lashes amp
beaming smile When you see him you
cant help but smile My son also has some
vision problems but is getting better He
loves his toy keys and could recognize his
bottle from anywhere Hes lovable
friendly joyful and bright
Angels in Action Celebrating the Abilities of our Angels
Gareth Edwards (Star Wars Director) acknowledges
The force is strong in the Angelman Alliance
It is often said that parents will do anything for their children A rare
disease called Angelman Syndrome is proving testimony to this fact
Driven by an unstoppable love for their children parent organisations
from 15 countries have formed an alliance to work together to progress
research that may help their children to speak run and live life to their
full potential As Gareth Edwards patron of the UK Charity that hosted
this yearsrsquo conference in Liverpool England said during his speech at
the conference ldquoAngels go further and beyondrdquo
With the support of ISIS pharmaceuticals recent findings by professor Art Beaudet (USA) are expected to
progress to clinical trials Results from other researchers in collaboration with pharmaceutical companies
also have promising results to improve the quality of life for children amp adults with Angelman Syndrome
Initially having to overcome language barriers cultural differences and different legal systems the parent
organisations created an international Alliance on Angelman Syndrome (ASA) to drive research forward
pooling resources and funds In the first two years over half a million eurorsquos (550000-) was raised with
more parent organisations worldwide continuing to join The parent organisations met this year in
Liverpool during the 50th anniversary of Angelman Syndrome At this conference representatives came
from England Ireland Belgium Netherlands Germany Austria France Italy Portugal Japan Israel
Hungary Poland Finland and Switzerland
As professor Ype Elgersma (NL) said ldquoThese are very exciting times because we might actually have the
possibility to reverse a severe genetic diseaserdquo Therefore the need to get things going is stronger than ever
within the Alliance and the need for more funding is evident Because in the end every parent wants their
child to be as happy and healthy as possible
Everything we do we do for our Angels wwwangelmanallianceor g
For information about the Alliance the research and other questions you can contact Betty Willemsen
bettywillemsenninafoundationeu
Dr Harry Angelman
1915 ndash 1996
El Dr Harry Angelman fue un meacutedico Ingleacutes quien
identificoacute lo que hoy en diacutea se llama Siacutendrome de
Angelman
Nacioacute en Birkenhead Inglaterra Le fascinaba el idioma
y la cultura de Italia
El fue el primero quien observoacute treacutes nintildeos no
relacionados quienes demostraban siacutentomas similares ndash
atrasos severos intelectuales un modo de andar que era
espasmoacutedico y riacutegido ausencia del hablar
convulsiones y una disposicioacuten contento
Luego duranted unas vacaciones en Italia descubrioacute
una pintura llamada ldquoUn Nintildeo con una Marionetardquo
creado por el artista del Renascimiento Giovanni
Francesco Caroto en el museo Castelvecchio en
Verona La pintura le hizo pensar en los nintildeos que eran
sus pacientes y le condujo a publicar un artiacuteculo
profesional en el antildeo 1965 que describiacutea lo que el
llamaba ldquoNintildeos Marionetasrdquo En aquel momento la
importancia de su artiacuteculo no fue reconocido como algo
importante
No pasoacute nada mas hasta Charles A Williams y Jaime L
Frias del departamento de Pediacuteatra Divisiacuteon de
Geneacutetica de la Universidad de Florida Colegio de
Medicina de Gainesville Florida sometieron un
artiacuteculo a la Revista Americana de Geneacutetica Meacutedica
explicando estudios de seacuteis pacientes comparando sus
datos con los de informes previos ndash incluyendo atrasos
intelectuales severos el andar como un ldquomarionetardquo
anormalidades cranio-faciales y espisodios frecuentes
de risas De repente se notoacute que eso era mucho maacutes
comuacuten de lo que anteriormente se creiacutea Ellos
propusieron ponerle el nombre de Siacutendrome de
Angelman en honor del Dr Harry Angelman
La Historia del Siacutendrome de Angelman (Spanish Translation)
Angelman Today
Gareth Edwards (Directeur de Star Wars) lrsquoaffirme la Force est avec lrsquoAngelman Syndrome Alliance (ASA)
On dit souvent que les parents feraient tout pour leurs enfants et crsquoest ce qui se veacuterifie agrave lrsquooccasion drsquoune maladie rare appeleacutee le syndrome drsquoAngelman Animeacutees drsquoun amour infini pour leurs enfants des organisations parentales de 15 pays ont formeacute une alliance dans le but de faire avancer la recherche qui permettra agrave ces enfants de parler courir et vivre leur vie pleinement Comme lrsquoaffirmait dans son intervention Gareth Edwards soutien de lrsquoassociation de bienfaisance anglaise qui accueillait cette anneacutee la confeacuterence internationale agrave Liverpool laquo Les Anges vont plus loin et au-delagrave raquo
De reacutecentes deacutecouvertes dues par le Professeur Art Beaudet (USA) avec le soutien des laboratoires pharmaceutiques ISIS vont conduire agrave des essais cliniques Drsquoautres chercheurs soutenus par des socieacuteteacutes pharmaceutiques ont obtenu des reacutesultats prometteurs pour ameacuteliorer la qualiteacute de vie des enfants et des adultes atteints du syndrome drsquoAngelman
Surmontant les obstacles dus aux langues aux diffeacuterences culturelles et leacutegales les organisations parentales ont creacuteeacute lrsquoAlliance du Syndrome drsquoAngelman (ASA) visant agrave faire progresser la recherche et agrave mettre en commun les ressources et les financements Dans les deux premiegraveres anneacutees 550 000 euro ont eacuteteacute reacuteunis et drsquoautres organisations venues du monde entier souhaitent srsquoy associer Cette anneacutee les organisations de parents se sont rencontreacutees agrave Liverpool dans le cadre du 50egraveme anniversaire de lrsquoidentification du syndrome Eacutetaient repreacutesenteacutes lrsquoAngleterre lrsquoIrlande la Belgique les Pays Bas lrsquoAllemagne lrsquoAutriche la France lrsquoItalie le Portugal le Japon Israeumll la Hongrie la Pologne la Finlande et la Suisse
Comme le disait le Professeur Ype Elgersma (NL) laquo Nous vivons des temps prometteurs car nous sommes en mesure drsquoinverser une grave maladie geacuteneacutetique raquo Crsquoest pourquoi il est de plus en plus neacutecessaire de renforcer notre action et de trouver drsquoautres financements Parce qursquoil est clair que chaque parent souhaite que son enfant vive heureux et en bonne santeacute
Tout ce que nous faisons nous le faisons pour nos Anges wwwangelmanallianceorg
Pour toute information sur lrsquoAlliance la recherche et drsquoautres questions vous pouvez contacter Betty Willemsen bettywillemsenninafoundationeu
Angelman Today
God only gives us what He is willing to walk us through
-Joell Gingrich Ketcham
ldquo ldquo
ldquo
Adding youtube video
platform to Angelman Today
Video content will include bull Interviews
bull Product Reviews
bull Latest Research
bull How To videos
bull Parent tips and interviews
bull Much more
Email Lizzieangelmantodaycom if you
would like to participate
Announcements
We are expanding Angelman Today to include a new
platform of video media
To do this we will be making some changes that will
include the publishing schedule for the online digital
magazine Starting in January 2016 we will start
publishing Angelman Today quarterly 4 information-
packed editions a year
Subscriptions of the online magazine will remain
FREE
Subscribing to the YouTube channel is also FREE
We welcome all Angelman foundations parents
care takers physicians and researchers to
contribute Deadlines are
bull December 10
bull March 10
bull June 10
bull September 10
Show your support for Angelman Today and subscribe
WWWANGELMANTODAYCOM November December 2015
Toby B Kroger in Kentucky Scotty at Wegmans in NY
There are many challenges that come along with being
a caretaker of an individual with special needs
including a task that for many may be simple a trip
that we all must do regularly which is shop for
groceries
The best inventions are usually created from a persons
desire to satisfy a need or to solve a problem they
encounter in their own life One set of parents did just
that Drew Ann and David Long have three children
Caroline is their middle child she was diagnosed with
Rett syndrome The challenge came when Drew Ann
went grocery shopping with her kids She had a
Making Shopping A Little
Easier This Holiday Season helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
toddler and Caroline in her wheelchair The problem
presented itself as in the form of a question ldquoHow
do you push a wheelchair and a shopping cartrdquo
Drew Ann had the answer She was able to vision the
cart and sat in her car and sketched it out on paper
She knew she was not the first to have this dilemma
nor would she be the last
Carolinersquos Carts can now be found at some select
retailers You can visit wwwcarolinescartcom to
find a location near you
Parents we need your help We at Angelman Today
are calling for action There are not enough stores
with Carolinersquos carts Parents it is up to us We are
the ones that need them so we have to be the ones to
request them at our local retailers Some stores like
Target Shoprite Publix Lucky and Wegmans are
starting to have them available If they are not
currently at a store near you just ask the manager
You will be helping not only your family but the
many other families that may not yet even know this
helpful cart exists
WWWANGELMANTODAYCOM November December 2015
Thank you A big thanks to all of the contributors that help bring you Angelman Today
Angelman Today Supporters
If I Need Help ndash wwwifineedhelporg
All of the Angelman and
Associated
Foundations
across the globe
Additional Contributors
Kat Adams
Maria Cano Moraleda
Erin Bates
Angelman Today is a lifestyle guide to achieving better health for individuals with Angelman Syndrome and their families It is written with your needs in mind but is not a substitute for consulting with your physician or other health care providers The publisher and authors are not responsible for any adverse effects or consequences resulting from the use of the suggestions products or procedures that appear on this website or online magazine All matters regarding your health should be supervised by a licensed health care physician Copyright 2014 Angelman Today LLC All rights reserved worldwide
CONTRIBUTORS
Marilyn Kennedy
Assistant Editor Marilynangelmantodaycom
Sybille Kraft Bellamy
Parent Expert in Nutrition
And LGIT diet FacebookcomAngelmanSyndromeDiet
STAY CONNECTED ON THE GO
DOWNLOAD THE NEW ISSUU APP TODAY ON GOOGLE PLAY
AND NOW IN THE APP STORE
Dr Harry Angelman
1915 ndash 1996
Dr Harry Angelman was an English physician
who identified what is now known as Angelman
Syndrome
He first observed three children who were not
related but showed similar symptoms of severe
intellectual delay stiff jerky gait lack of speech
seizures motor disorders and happy demeanors
Although Dr Angelman was born in Birkenhead
England he was an enthusiast for the language
and country of Italy And it was while vacationing
in Italy he observed an oil painting called A Boy
with a Puppet by the renaissance artist Giovanni
Francesco Caroto at the Castelvecchio museum in
Verona Reminded of the children hersquod observed
Dr Angelman published a paper in 1965 that
described what he called ldquopuppet childrenrdquo At
this time his paper was not immediately
recognized as important
It wasnrsquot until 1982 when Charles A Williams
and Jaime L Frias of the department of Pediatrics
Division of Genetics University of Florida
College of Medicine Gainesville submitted a
paper to the American Journal of Medical
Genetics reporting studies of six patients and
comparing their data to those from previous
reports - severe developmental delay ldquopuppet-
likerdquo gait craniofacial abnormalities and frequent
episodes of laughter- that it became clear the
syndrome was more common than previously
thought They proposed the name of this disorder
be changed to Angelman Syndrome
The History of Angelman Syndrome
Angelman Today
Books Recommended by Parents
Connect with us on
Thanks for your support
Please Share Angelman Today
wwwangelmantodaycom
Family Fun Day - Michael Drzewiecki and company
Berto and Minnie with their daughter Pam
Annual Tractor Cruise - Horton Kansas
Because of you AS families benefit
THANK YOU to every individual and organization that played a role in these fundraisers either by spearheading attending or donating to these events
Blarney Cup Paddle Tournament The Fitzgeraldrsquos in Ohio $25450
Meerdo Annual Golf Tournament The Meerdorsquos in Utah $19980
Chip Away at AS Golf Tournament The Elyrsquos in Georgia $11683
Tractor Cruise The Olsenrsquos in Kansas $5350
Cure for the Angels Family Day Angelique Tuthill in New York $4747
Discover Day Camp Christina Polleto in New York $4309
Yaron Werber of Ovid Therapeutics raised $3953 for ASF at the Brooklyn Rock n Roll 12 Marathon
Hauser Junior High School Fundraiser in Westchester New York $3535
Custom Harley Davidson Bike Show Noel Perez and Berto Castellanos in California $3360
Pardi Gras Promotion and Sales Proceeds $2500
Tierrarsquos Event $2435
Family Fun Day Michael Drzewiecki in New York $2338
The Hope Classic at Lower Merion High School in Medinah NY $2342
Run Like A Mother 5k Tiffany Cruikshank in Hinsdale Illinois $1880
Oakland Arsquos Fundraiser in California $1345
7th Street Sportsmen Club Fundraiser in Pennsylvania $1000
THANK YOU to all of the fundraisers who have brought in more than $100000 of donations in 2015 We are very excited at the possibilities and creativity our families will bring in 2016
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Summit4Angelman
Father to young boy with AS climbs Mt Kilimanjaro to raise awareness of ASFrom Kyle himself
Irsquom going to take 8 days to climb up the worldrsquos tallest freestanding mountain to raise awareness for Angelman syndrome and Irsquove realized during my training that I donrsquot think I can do it alone Of course Irsquom going up with a great group looking forward to helping the cause in any way they can but Irsquove found such strength in keeping focused on why Irsquom doing this and every time I ldquopicturerdquo my son Madden it keeps me going when I desperately want to quit or cut corners in training If I keep in mind how my son never quits and overcomes his challenges with a smile I realize this mountain isnrsquot quite as tall I as first thought The point ishellipwithout Madden this climb seems a lot more difficult Which got me thinking what if I have an army of Angels with me every step of the climb Irsquom asking you to send me a picture of your Angel so I can take them to the top of Kilimanjaro with me Each photo and story you send me will provide the strength I need to keep going when the air is thin the weather is cold and my head is pounding I will do everything in my power to get to the top with them My chances will be far better with each person I take up with me If I make it to the Summit I promise they will see the view with me at 19341 feet
Visit Kylersquos personal blog at wwwsummit4angelmancom to find out more about Kylersquos journey
How can you helpbull Share your personal Summit story of accomplishment
on Facebook and Twitter and include the hashtag Summit4Angelman
bull Introduce Angelman syndrome to new peoplehellipKylersquos goal is to raise awareness of AS and he wants to reach 19341mdashthatrsquos one new person for every foot that Mt Kilimanjaro is tall
bull Share a photo of your loved one with AS (send to kyrooneyoutlookcom) for Kyle to take to the top of Mt Kilimanjaro
Looks Whatrsquos Shouted From the Mountaintop Angelman Syndrome Awareness
ASF Communication Training Series
Having challenges with helping your loved one with AS better communicate We have the resource for you In collaboration with several AS communication experts the ASF has created a FREE communication resource that you can access AT ANY TIME the ASF Communication Training Series This Series takes all of the hours of great communication workshops and breaks them down into smaller digestible parts so that you and your individual with AS can reach herhis greatest communication success at any age Using web-based teaching the Series is designed to be sequential and you can join at any time and proceed through the training at your childrsquos pace of learning Click here for more and to access the schedule past webinar recordings and handouts
Meet the experts
ERIN SHELDON M EDErin earned her Masters of Education studying the learning characteristics of students with AS Erin works as an assistive technology consultant with a focus on supporting students with complex learning needs to access the general curriculum in inclusive classrooms She founded the Angelman Literacy
Project an initiative to support families and school teams to foster emergent literacy development in students with AS She presents professional development workshops and webinars across North America and Europe including at conferences such as Closing the Gap and ATIA and has authored manuals book chapters and journal articles
DR CAROLINE MUSSELWHITE CCC-SLPDr Musselwhite is an assistive technology specialist with more than 35 years of experience working with children and adolescents with significant disabilities in a variety of settings including Head Start developmental day programs homes and the public schools Dr
Musselwhite has written a number of textbooks and ldquohow-tordquo books on a range of topics and has also authored many books and software programs for youth with disabilities She has presented thousands of workshops throughout North and South America Australia Europe and Africa and is a founding member and Fellow of the International Society for Augmentative and Alternative Communication
MAUREEN NEVERS MS CCC-SLP LICENSED SPEECH-LANGUAGE PATHOLOGIST AUGMENTATIVE COMMUNICATION SPECIALISTMaureen earned a BS in Communication Disorders from the University of Massachusetts at Amherst in 1991 then earned a MS in Speech-Language
Pathology from the University of Vermont in 1993 Her graduate work included participation in a comprehensive training program in AAC She worked for Easter Seals in Massachusetts for eleven years before joining the Center on Disability and Community Inclusion at the University of Vermont eleven years ago She currently works as an Augmentative Communication Specialist with the Vermont I-Team where she is part of an interdisciplinary team that consults with school teams across the state to support individuals with complex communication needs
Communication training you can understand and use
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
MARY-LOUISE BERTRAMMary-Louise Bertram is a qualified Early Childhood Teacher from Perth Western Australia with special qualifications and training in the areas of communication sensory processing and literacy supports for children with complex disabilities Mary-Louise became involved with the AS community in 2007 while
teaching a class of six children four of whom had AS (all Del +) Since then Mary-Louise has worked with people with AS of all ages across Western Australia in the first statewide comprehensive AS-specific communication intervention of its kind She has supported families across the globe to advocate for their childrsquos right to high-quality communication and education intervention Mary-Louise currently works in private practice supporting individuals with complex disabilities (and their families) with communication and literacy
Families are also encouraged to support each other and share tips via the Seriesrsquo private ASF Communication Training Series Facebook group
Twenty years ago we never would have imagined that so many generous people like you would open their hearts to help those affected by AS Your generosity eases the financial and emotional burden on families by supporting our family resource program and has helped our researchers make significant breakthroughs in treatments and potential cures for AS Without you there would be no us We are forever grateful for your support
Click here to make a contribution to the ASFrsquos end-of-year appeal All donations are 100 tax deductible per IRS regulations
Itrsquos ALL because of YOU
WWWANGELMANTODAYCOM November December 2015
By Cass Gamero
My sons name is Alexander and he was
recently diagnosed in July 2015 Hes only
18 months old and is loved by all Anyone
who meets him cant help but be
memorized by his long eye lashes amp
beaming smile When you see him you
cant help but smile My son also has some
vision problems but is getting better He
loves his toy keys and could recognize his
bottle from anywhere Hes lovable
friendly joyful and bright
Angels in Action Celebrating the Abilities of our Angels
Gareth Edwards (Star Wars Director) acknowledges
The force is strong in the Angelman Alliance
It is often said that parents will do anything for their children A rare
disease called Angelman Syndrome is proving testimony to this fact
Driven by an unstoppable love for their children parent organisations
from 15 countries have formed an alliance to work together to progress
research that may help their children to speak run and live life to their
full potential As Gareth Edwards patron of the UK Charity that hosted
this yearsrsquo conference in Liverpool England said during his speech at
the conference ldquoAngels go further and beyondrdquo
With the support of ISIS pharmaceuticals recent findings by professor Art Beaudet (USA) are expected to
progress to clinical trials Results from other researchers in collaboration with pharmaceutical companies
also have promising results to improve the quality of life for children amp adults with Angelman Syndrome
Initially having to overcome language barriers cultural differences and different legal systems the parent
organisations created an international Alliance on Angelman Syndrome (ASA) to drive research forward
pooling resources and funds In the first two years over half a million eurorsquos (550000-) was raised with
more parent organisations worldwide continuing to join The parent organisations met this year in
Liverpool during the 50th anniversary of Angelman Syndrome At this conference representatives came
from England Ireland Belgium Netherlands Germany Austria France Italy Portugal Japan Israel
Hungary Poland Finland and Switzerland
As professor Ype Elgersma (NL) said ldquoThese are very exciting times because we might actually have the
possibility to reverse a severe genetic diseaserdquo Therefore the need to get things going is stronger than ever
within the Alliance and the need for more funding is evident Because in the end every parent wants their
child to be as happy and healthy as possible
Everything we do we do for our Angels wwwangelmanallianceor g
For information about the Alliance the research and other questions you can contact Betty Willemsen
bettywillemsenninafoundationeu
Dr Harry Angelman
1915 ndash 1996
El Dr Harry Angelman fue un meacutedico Ingleacutes quien
identificoacute lo que hoy en diacutea se llama Siacutendrome de
Angelman
Nacioacute en Birkenhead Inglaterra Le fascinaba el idioma
y la cultura de Italia
El fue el primero quien observoacute treacutes nintildeos no
relacionados quienes demostraban siacutentomas similares ndash
atrasos severos intelectuales un modo de andar que era
espasmoacutedico y riacutegido ausencia del hablar
convulsiones y una disposicioacuten contento
Luego duranted unas vacaciones en Italia descubrioacute
una pintura llamada ldquoUn Nintildeo con una Marionetardquo
creado por el artista del Renascimiento Giovanni
Francesco Caroto en el museo Castelvecchio en
Verona La pintura le hizo pensar en los nintildeos que eran
sus pacientes y le condujo a publicar un artiacuteculo
profesional en el antildeo 1965 que describiacutea lo que el
llamaba ldquoNintildeos Marionetasrdquo En aquel momento la
importancia de su artiacuteculo no fue reconocido como algo
importante
No pasoacute nada mas hasta Charles A Williams y Jaime L
Frias del departamento de Pediacuteatra Divisiacuteon de
Geneacutetica de la Universidad de Florida Colegio de
Medicina de Gainesville Florida sometieron un
artiacuteculo a la Revista Americana de Geneacutetica Meacutedica
explicando estudios de seacuteis pacientes comparando sus
datos con los de informes previos ndash incluyendo atrasos
intelectuales severos el andar como un ldquomarionetardquo
anormalidades cranio-faciales y espisodios frecuentes
de risas De repente se notoacute que eso era mucho maacutes
comuacuten de lo que anteriormente se creiacutea Ellos
propusieron ponerle el nombre de Siacutendrome de
Angelman en honor del Dr Harry Angelman
La Historia del Siacutendrome de Angelman (Spanish Translation)
Angelman Today
Gareth Edwards (Directeur de Star Wars) lrsquoaffirme la Force est avec lrsquoAngelman Syndrome Alliance (ASA)
On dit souvent que les parents feraient tout pour leurs enfants et crsquoest ce qui se veacuterifie agrave lrsquooccasion drsquoune maladie rare appeleacutee le syndrome drsquoAngelman Animeacutees drsquoun amour infini pour leurs enfants des organisations parentales de 15 pays ont formeacute une alliance dans le but de faire avancer la recherche qui permettra agrave ces enfants de parler courir et vivre leur vie pleinement Comme lrsquoaffirmait dans son intervention Gareth Edwards soutien de lrsquoassociation de bienfaisance anglaise qui accueillait cette anneacutee la confeacuterence internationale agrave Liverpool laquo Les Anges vont plus loin et au-delagrave raquo
De reacutecentes deacutecouvertes dues par le Professeur Art Beaudet (USA) avec le soutien des laboratoires pharmaceutiques ISIS vont conduire agrave des essais cliniques Drsquoautres chercheurs soutenus par des socieacuteteacutes pharmaceutiques ont obtenu des reacutesultats prometteurs pour ameacuteliorer la qualiteacute de vie des enfants et des adultes atteints du syndrome drsquoAngelman
Surmontant les obstacles dus aux langues aux diffeacuterences culturelles et leacutegales les organisations parentales ont creacuteeacute lrsquoAlliance du Syndrome drsquoAngelman (ASA) visant agrave faire progresser la recherche et agrave mettre en commun les ressources et les financements Dans les deux premiegraveres anneacutees 550 000 euro ont eacuteteacute reacuteunis et drsquoautres organisations venues du monde entier souhaitent srsquoy associer Cette anneacutee les organisations de parents se sont rencontreacutees agrave Liverpool dans le cadre du 50egraveme anniversaire de lrsquoidentification du syndrome Eacutetaient repreacutesenteacutes lrsquoAngleterre lrsquoIrlande la Belgique les Pays Bas lrsquoAllemagne lrsquoAutriche la France lrsquoItalie le Portugal le Japon Israeumll la Hongrie la Pologne la Finlande et la Suisse
Comme le disait le Professeur Ype Elgersma (NL) laquo Nous vivons des temps prometteurs car nous sommes en mesure drsquoinverser une grave maladie geacuteneacutetique raquo Crsquoest pourquoi il est de plus en plus neacutecessaire de renforcer notre action et de trouver drsquoautres financements Parce qursquoil est clair que chaque parent souhaite que son enfant vive heureux et en bonne santeacute
Tout ce que nous faisons nous le faisons pour nos Anges wwwangelmanallianceorg
Pour toute information sur lrsquoAlliance la recherche et drsquoautres questions vous pouvez contacter Betty Willemsen bettywillemsenninafoundationeu
Angelman Today
God only gives us what He is willing to walk us through
-Joell Gingrich Ketcham
ldquo ldquo
ldquo
Adding youtube video
platform to Angelman Today
Video content will include bull Interviews
bull Product Reviews
bull Latest Research
bull How To videos
bull Parent tips and interviews
bull Much more
Email Lizzieangelmantodaycom if you
would like to participate
Announcements
We are expanding Angelman Today to include a new
platform of video media
To do this we will be making some changes that will
include the publishing schedule for the online digital
magazine Starting in January 2016 we will start
publishing Angelman Today quarterly 4 information-
packed editions a year
Subscriptions of the online magazine will remain
FREE
Subscribing to the YouTube channel is also FREE
We welcome all Angelman foundations parents
care takers physicians and researchers to
contribute Deadlines are
bull December 10
bull March 10
bull June 10
bull September 10
Show your support for Angelman Today and subscribe
WWWANGELMANTODAYCOM November December 2015
Toby B Kroger in Kentucky Scotty at Wegmans in NY
There are many challenges that come along with being
a caretaker of an individual with special needs
including a task that for many may be simple a trip
that we all must do regularly which is shop for
groceries
The best inventions are usually created from a persons
desire to satisfy a need or to solve a problem they
encounter in their own life One set of parents did just
that Drew Ann and David Long have three children
Caroline is their middle child she was diagnosed with
Rett syndrome The challenge came when Drew Ann
went grocery shopping with her kids She had a
Making Shopping A Little
Easier This Holiday Season helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
toddler and Caroline in her wheelchair The problem
presented itself as in the form of a question ldquoHow
do you push a wheelchair and a shopping cartrdquo
Drew Ann had the answer She was able to vision the
cart and sat in her car and sketched it out on paper
She knew she was not the first to have this dilemma
nor would she be the last
Carolinersquos Carts can now be found at some select
retailers You can visit wwwcarolinescartcom to
find a location near you
Parents we need your help We at Angelman Today
are calling for action There are not enough stores
with Carolinersquos carts Parents it is up to us We are
the ones that need them so we have to be the ones to
request them at our local retailers Some stores like
Target Shoprite Publix Lucky and Wegmans are
starting to have them available If they are not
currently at a store near you just ask the manager
You will be helping not only your family but the
many other families that may not yet even know this
helpful cart exists
WWWANGELMANTODAYCOM November December 2015
Thank you A big thanks to all of the contributors that help bring you Angelman Today
Angelman Today Supporters
If I Need Help ndash wwwifineedhelporg
All of the Angelman and
Associated
Foundations
across the globe
Additional Contributors
Kat Adams
Maria Cano Moraleda
Erin Bates
Angelman Today is a lifestyle guide to achieving better health for individuals with Angelman Syndrome and their families It is written with your needs in mind but is not a substitute for consulting with your physician or other health care providers The publisher and authors are not responsible for any adverse effects or consequences resulting from the use of the suggestions products or procedures that appear on this website or online magazine All matters regarding your health should be supervised by a licensed health care physician Copyright 2014 Angelman Today LLC All rights reserved worldwide
CONTRIBUTORS
Marilyn Kennedy
Assistant Editor Marilynangelmantodaycom
Sybille Kraft Bellamy
Parent Expert in Nutrition
And LGIT diet FacebookcomAngelmanSyndromeDiet
STAY CONNECTED ON THE GO
DOWNLOAD THE NEW ISSUU APP TODAY ON GOOGLE PLAY
AND NOW IN THE APP STORE
Dr Harry Angelman
1915 ndash 1996
Dr Harry Angelman was an English physician
who identified what is now known as Angelman
Syndrome
He first observed three children who were not
related but showed similar symptoms of severe
intellectual delay stiff jerky gait lack of speech
seizures motor disorders and happy demeanors
Although Dr Angelman was born in Birkenhead
England he was an enthusiast for the language
and country of Italy And it was while vacationing
in Italy he observed an oil painting called A Boy
with a Puppet by the renaissance artist Giovanni
Francesco Caroto at the Castelvecchio museum in
Verona Reminded of the children hersquod observed
Dr Angelman published a paper in 1965 that
described what he called ldquopuppet childrenrdquo At
this time his paper was not immediately
recognized as important
It wasnrsquot until 1982 when Charles A Williams
and Jaime L Frias of the department of Pediatrics
Division of Genetics University of Florida
College of Medicine Gainesville submitted a
paper to the American Journal of Medical
Genetics reporting studies of six patients and
comparing their data to those from previous
reports - severe developmental delay ldquopuppet-
likerdquo gait craniofacial abnormalities and frequent
episodes of laughter- that it became clear the
syndrome was more common than previously
thought They proposed the name of this disorder
be changed to Angelman Syndrome
The History of Angelman Syndrome
Angelman Today
Books Recommended by Parents
Connect with us on
Thanks for your support
Please Share Angelman Today
wwwangelmantodaycom
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
Summit4Angelman
Father to young boy with AS climbs Mt Kilimanjaro to raise awareness of ASFrom Kyle himself
Irsquom going to take 8 days to climb up the worldrsquos tallest freestanding mountain to raise awareness for Angelman syndrome and Irsquove realized during my training that I donrsquot think I can do it alone Of course Irsquom going up with a great group looking forward to helping the cause in any way they can but Irsquove found such strength in keeping focused on why Irsquom doing this and every time I ldquopicturerdquo my son Madden it keeps me going when I desperately want to quit or cut corners in training If I keep in mind how my son never quits and overcomes his challenges with a smile I realize this mountain isnrsquot quite as tall I as first thought The point ishellipwithout Madden this climb seems a lot more difficult Which got me thinking what if I have an army of Angels with me every step of the climb Irsquom asking you to send me a picture of your Angel so I can take them to the top of Kilimanjaro with me Each photo and story you send me will provide the strength I need to keep going when the air is thin the weather is cold and my head is pounding I will do everything in my power to get to the top with them My chances will be far better with each person I take up with me If I make it to the Summit I promise they will see the view with me at 19341 feet
Visit Kylersquos personal blog at wwwsummit4angelmancom to find out more about Kylersquos journey
How can you helpbull Share your personal Summit story of accomplishment
on Facebook and Twitter and include the hashtag Summit4Angelman
bull Introduce Angelman syndrome to new peoplehellipKylersquos goal is to raise awareness of AS and he wants to reach 19341mdashthatrsquos one new person for every foot that Mt Kilimanjaro is tall
bull Share a photo of your loved one with AS (send to kyrooneyoutlookcom) for Kyle to take to the top of Mt Kilimanjaro
Looks Whatrsquos Shouted From the Mountaintop Angelman Syndrome Awareness
ASF Communication Training Series
Having challenges with helping your loved one with AS better communicate We have the resource for you In collaboration with several AS communication experts the ASF has created a FREE communication resource that you can access AT ANY TIME the ASF Communication Training Series This Series takes all of the hours of great communication workshops and breaks them down into smaller digestible parts so that you and your individual with AS can reach herhis greatest communication success at any age Using web-based teaching the Series is designed to be sequential and you can join at any time and proceed through the training at your childrsquos pace of learning Click here for more and to access the schedule past webinar recordings and handouts
Meet the experts
ERIN SHELDON M EDErin earned her Masters of Education studying the learning characteristics of students with AS Erin works as an assistive technology consultant with a focus on supporting students with complex learning needs to access the general curriculum in inclusive classrooms She founded the Angelman Literacy
Project an initiative to support families and school teams to foster emergent literacy development in students with AS She presents professional development workshops and webinars across North America and Europe including at conferences such as Closing the Gap and ATIA and has authored manuals book chapters and journal articles
DR CAROLINE MUSSELWHITE CCC-SLPDr Musselwhite is an assistive technology specialist with more than 35 years of experience working with children and adolescents with significant disabilities in a variety of settings including Head Start developmental day programs homes and the public schools Dr
Musselwhite has written a number of textbooks and ldquohow-tordquo books on a range of topics and has also authored many books and software programs for youth with disabilities She has presented thousands of workshops throughout North and South America Australia Europe and Africa and is a founding member and Fellow of the International Society for Augmentative and Alternative Communication
MAUREEN NEVERS MS CCC-SLP LICENSED SPEECH-LANGUAGE PATHOLOGIST AUGMENTATIVE COMMUNICATION SPECIALISTMaureen earned a BS in Communication Disorders from the University of Massachusetts at Amherst in 1991 then earned a MS in Speech-Language
Pathology from the University of Vermont in 1993 Her graduate work included participation in a comprehensive training program in AAC She worked for Easter Seals in Massachusetts for eleven years before joining the Center on Disability and Community Inclusion at the University of Vermont eleven years ago She currently works as an Augmentative Communication Specialist with the Vermont I-Team where she is part of an interdisciplinary team that consults with school teams across the state to support individuals with complex communication needs
Communication training you can understand and use
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
MARY-LOUISE BERTRAMMary-Louise Bertram is a qualified Early Childhood Teacher from Perth Western Australia with special qualifications and training in the areas of communication sensory processing and literacy supports for children with complex disabilities Mary-Louise became involved with the AS community in 2007 while
teaching a class of six children four of whom had AS (all Del +) Since then Mary-Louise has worked with people with AS of all ages across Western Australia in the first statewide comprehensive AS-specific communication intervention of its kind She has supported families across the globe to advocate for their childrsquos right to high-quality communication and education intervention Mary-Louise currently works in private practice supporting individuals with complex disabilities (and their families) with communication and literacy
Families are also encouraged to support each other and share tips via the Seriesrsquo private ASF Communication Training Series Facebook group
Twenty years ago we never would have imagined that so many generous people like you would open their hearts to help those affected by AS Your generosity eases the financial and emotional burden on families by supporting our family resource program and has helped our researchers make significant breakthroughs in treatments and potential cures for AS Without you there would be no us We are forever grateful for your support
Click here to make a contribution to the ASFrsquos end-of-year appeal All donations are 100 tax deductible per IRS regulations
Itrsquos ALL because of YOU
WWWANGELMANTODAYCOM November December 2015
By Cass Gamero
My sons name is Alexander and he was
recently diagnosed in July 2015 Hes only
18 months old and is loved by all Anyone
who meets him cant help but be
memorized by his long eye lashes amp
beaming smile When you see him you
cant help but smile My son also has some
vision problems but is getting better He
loves his toy keys and could recognize his
bottle from anywhere Hes lovable
friendly joyful and bright
Angels in Action Celebrating the Abilities of our Angels
Gareth Edwards (Star Wars Director) acknowledges
The force is strong in the Angelman Alliance
It is often said that parents will do anything for their children A rare
disease called Angelman Syndrome is proving testimony to this fact
Driven by an unstoppable love for their children parent organisations
from 15 countries have formed an alliance to work together to progress
research that may help their children to speak run and live life to their
full potential As Gareth Edwards patron of the UK Charity that hosted
this yearsrsquo conference in Liverpool England said during his speech at
the conference ldquoAngels go further and beyondrdquo
With the support of ISIS pharmaceuticals recent findings by professor Art Beaudet (USA) are expected to
progress to clinical trials Results from other researchers in collaboration with pharmaceutical companies
also have promising results to improve the quality of life for children amp adults with Angelman Syndrome
Initially having to overcome language barriers cultural differences and different legal systems the parent
organisations created an international Alliance on Angelman Syndrome (ASA) to drive research forward
pooling resources and funds In the first two years over half a million eurorsquos (550000-) was raised with
more parent organisations worldwide continuing to join The parent organisations met this year in
Liverpool during the 50th anniversary of Angelman Syndrome At this conference representatives came
from England Ireland Belgium Netherlands Germany Austria France Italy Portugal Japan Israel
Hungary Poland Finland and Switzerland
As professor Ype Elgersma (NL) said ldquoThese are very exciting times because we might actually have the
possibility to reverse a severe genetic diseaserdquo Therefore the need to get things going is stronger than ever
within the Alliance and the need for more funding is evident Because in the end every parent wants their
child to be as happy and healthy as possible
Everything we do we do for our Angels wwwangelmanallianceor g
For information about the Alliance the research and other questions you can contact Betty Willemsen
bettywillemsenninafoundationeu
Dr Harry Angelman
1915 ndash 1996
El Dr Harry Angelman fue un meacutedico Ingleacutes quien
identificoacute lo que hoy en diacutea se llama Siacutendrome de
Angelman
Nacioacute en Birkenhead Inglaterra Le fascinaba el idioma
y la cultura de Italia
El fue el primero quien observoacute treacutes nintildeos no
relacionados quienes demostraban siacutentomas similares ndash
atrasos severos intelectuales un modo de andar que era
espasmoacutedico y riacutegido ausencia del hablar
convulsiones y una disposicioacuten contento
Luego duranted unas vacaciones en Italia descubrioacute
una pintura llamada ldquoUn Nintildeo con una Marionetardquo
creado por el artista del Renascimiento Giovanni
Francesco Caroto en el museo Castelvecchio en
Verona La pintura le hizo pensar en los nintildeos que eran
sus pacientes y le condujo a publicar un artiacuteculo
profesional en el antildeo 1965 que describiacutea lo que el
llamaba ldquoNintildeos Marionetasrdquo En aquel momento la
importancia de su artiacuteculo no fue reconocido como algo
importante
No pasoacute nada mas hasta Charles A Williams y Jaime L
Frias del departamento de Pediacuteatra Divisiacuteon de
Geneacutetica de la Universidad de Florida Colegio de
Medicina de Gainesville Florida sometieron un
artiacuteculo a la Revista Americana de Geneacutetica Meacutedica
explicando estudios de seacuteis pacientes comparando sus
datos con los de informes previos ndash incluyendo atrasos
intelectuales severos el andar como un ldquomarionetardquo
anormalidades cranio-faciales y espisodios frecuentes
de risas De repente se notoacute que eso era mucho maacutes
comuacuten de lo que anteriormente se creiacutea Ellos
propusieron ponerle el nombre de Siacutendrome de
Angelman en honor del Dr Harry Angelman
La Historia del Siacutendrome de Angelman (Spanish Translation)
Angelman Today
Gareth Edwards (Directeur de Star Wars) lrsquoaffirme la Force est avec lrsquoAngelman Syndrome Alliance (ASA)
On dit souvent que les parents feraient tout pour leurs enfants et crsquoest ce qui se veacuterifie agrave lrsquooccasion drsquoune maladie rare appeleacutee le syndrome drsquoAngelman Animeacutees drsquoun amour infini pour leurs enfants des organisations parentales de 15 pays ont formeacute une alliance dans le but de faire avancer la recherche qui permettra agrave ces enfants de parler courir et vivre leur vie pleinement Comme lrsquoaffirmait dans son intervention Gareth Edwards soutien de lrsquoassociation de bienfaisance anglaise qui accueillait cette anneacutee la confeacuterence internationale agrave Liverpool laquo Les Anges vont plus loin et au-delagrave raquo
De reacutecentes deacutecouvertes dues par le Professeur Art Beaudet (USA) avec le soutien des laboratoires pharmaceutiques ISIS vont conduire agrave des essais cliniques Drsquoautres chercheurs soutenus par des socieacuteteacutes pharmaceutiques ont obtenu des reacutesultats prometteurs pour ameacuteliorer la qualiteacute de vie des enfants et des adultes atteints du syndrome drsquoAngelman
Surmontant les obstacles dus aux langues aux diffeacuterences culturelles et leacutegales les organisations parentales ont creacuteeacute lrsquoAlliance du Syndrome drsquoAngelman (ASA) visant agrave faire progresser la recherche et agrave mettre en commun les ressources et les financements Dans les deux premiegraveres anneacutees 550 000 euro ont eacuteteacute reacuteunis et drsquoautres organisations venues du monde entier souhaitent srsquoy associer Cette anneacutee les organisations de parents se sont rencontreacutees agrave Liverpool dans le cadre du 50egraveme anniversaire de lrsquoidentification du syndrome Eacutetaient repreacutesenteacutes lrsquoAngleterre lrsquoIrlande la Belgique les Pays Bas lrsquoAllemagne lrsquoAutriche la France lrsquoItalie le Portugal le Japon Israeumll la Hongrie la Pologne la Finlande et la Suisse
Comme le disait le Professeur Ype Elgersma (NL) laquo Nous vivons des temps prometteurs car nous sommes en mesure drsquoinverser une grave maladie geacuteneacutetique raquo Crsquoest pourquoi il est de plus en plus neacutecessaire de renforcer notre action et de trouver drsquoautres financements Parce qursquoil est clair que chaque parent souhaite que son enfant vive heureux et en bonne santeacute
Tout ce que nous faisons nous le faisons pour nos Anges wwwangelmanallianceorg
Pour toute information sur lrsquoAlliance la recherche et drsquoautres questions vous pouvez contacter Betty Willemsen bettywillemsenninafoundationeu
Angelman Today
God only gives us what He is willing to walk us through
-Joell Gingrich Ketcham
ldquo ldquo
ldquo
Adding youtube video
platform to Angelman Today
Video content will include bull Interviews
bull Product Reviews
bull Latest Research
bull How To videos
bull Parent tips and interviews
bull Much more
Email Lizzieangelmantodaycom if you
would like to participate
Announcements
We are expanding Angelman Today to include a new
platform of video media
To do this we will be making some changes that will
include the publishing schedule for the online digital
magazine Starting in January 2016 we will start
publishing Angelman Today quarterly 4 information-
packed editions a year
Subscriptions of the online magazine will remain
FREE
Subscribing to the YouTube channel is also FREE
We welcome all Angelman foundations parents
care takers physicians and researchers to
contribute Deadlines are
bull December 10
bull March 10
bull June 10
bull September 10
Show your support for Angelman Today and subscribe
WWWANGELMANTODAYCOM November December 2015
Toby B Kroger in Kentucky Scotty at Wegmans in NY
There are many challenges that come along with being
a caretaker of an individual with special needs
including a task that for many may be simple a trip
that we all must do regularly which is shop for
groceries
The best inventions are usually created from a persons
desire to satisfy a need or to solve a problem they
encounter in their own life One set of parents did just
that Drew Ann and David Long have three children
Caroline is their middle child she was diagnosed with
Rett syndrome The challenge came when Drew Ann
went grocery shopping with her kids She had a
Making Shopping A Little
Easier This Holiday Season helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
toddler and Caroline in her wheelchair The problem
presented itself as in the form of a question ldquoHow
do you push a wheelchair and a shopping cartrdquo
Drew Ann had the answer She was able to vision the
cart and sat in her car and sketched it out on paper
She knew she was not the first to have this dilemma
nor would she be the last
Carolinersquos Carts can now be found at some select
retailers You can visit wwwcarolinescartcom to
find a location near you
Parents we need your help We at Angelman Today
are calling for action There are not enough stores
with Carolinersquos carts Parents it is up to us We are
the ones that need them so we have to be the ones to
request them at our local retailers Some stores like
Target Shoprite Publix Lucky and Wegmans are
starting to have them available If they are not
currently at a store near you just ask the manager
You will be helping not only your family but the
many other families that may not yet even know this
helpful cart exists
WWWANGELMANTODAYCOM November December 2015
Thank you A big thanks to all of the contributors that help bring you Angelman Today
Angelman Today Supporters
If I Need Help ndash wwwifineedhelporg
All of the Angelman and
Associated
Foundations
across the globe
Additional Contributors
Kat Adams
Maria Cano Moraleda
Erin Bates
Angelman Today is a lifestyle guide to achieving better health for individuals with Angelman Syndrome and their families It is written with your needs in mind but is not a substitute for consulting with your physician or other health care providers The publisher and authors are not responsible for any adverse effects or consequences resulting from the use of the suggestions products or procedures that appear on this website or online magazine All matters regarding your health should be supervised by a licensed health care physician Copyright 2014 Angelman Today LLC All rights reserved worldwide
CONTRIBUTORS
Marilyn Kennedy
Assistant Editor Marilynangelmantodaycom
Sybille Kraft Bellamy
Parent Expert in Nutrition
And LGIT diet FacebookcomAngelmanSyndromeDiet
STAY CONNECTED ON THE GO
DOWNLOAD THE NEW ISSUU APP TODAY ON GOOGLE PLAY
AND NOW IN THE APP STORE
Dr Harry Angelman
1915 ndash 1996
Dr Harry Angelman was an English physician
who identified what is now known as Angelman
Syndrome
He first observed three children who were not
related but showed similar symptoms of severe
intellectual delay stiff jerky gait lack of speech
seizures motor disorders and happy demeanors
Although Dr Angelman was born in Birkenhead
England he was an enthusiast for the language
and country of Italy And it was while vacationing
in Italy he observed an oil painting called A Boy
with a Puppet by the renaissance artist Giovanni
Francesco Caroto at the Castelvecchio museum in
Verona Reminded of the children hersquod observed
Dr Angelman published a paper in 1965 that
described what he called ldquopuppet childrenrdquo At
this time his paper was not immediately
recognized as important
It wasnrsquot until 1982 when Charles A Williams
and Jaime L Frias of the department of Pediatrics
Division of Genetics University of Florida
College of Medicine Gainesville submitted a
paper to the American Journal of Medical
Genetics reporting studies of six patients and
comparing their data to those from previous
reports - severe developmental delay ldquopuppet-
likerdquo gait craniofacial abnormalities and frequent
episodes of laughter- that it became clear the
syndrome was more common than previously
thought They proposed the name of this disorder
be changed to Angelman Syndrome
The History of Angelman Syndrome
Angelman Today
Books Recommended by Parents
Connect with us on
Thanks for your support
Please Share Angelman Today
wwwangelmantodaycom
ASF Communication Training Series
Having challenges with helping your loved one with AS better communicate We have the resource for you In collaboration with several AS communication experts the ASF has created a FREE communication resource that you can access AT ANY TIME the ASF Communication Training Series This Series takes all of the hours of great communication workshops and breaks them down into smaller digestible parts so that you and your individual with AS can reach herhis greatest communication success at any age Using web-based teaching the Series is designed to be sequential and you can join at any time and proceed through the training at your childrsquos pace of learning Click here for more and to access the schedule past webinar recordings and handouts
Meet the experts
ERIN SHELDON M EDErin earned her Masters of Education studying the learning characteristics of students with AS Erin works as an assistive technology consultant with a focus on supporting students with complex learning needs to access the general curriculum in inclusive classrooms She founded the Angelman Literacy
Project an initiative to support families and school teams to foster emergent literacy development in students with AS She presents professional development workshops and webinars across North America and Europe including at conferences such as Closing the Gap and ATIA and has authored manuals book chapters and journal articles
DR CAROLINE MUSSELWHITE CCC-SLPDr Musselwhite is an assistive technology specialist with more than 35 years of experience working with children and adolescents with significant disabilities in a variety of settings including Head Start developmental day programs homes and the public schools Dr
Musselwhite has written a number of textbooks and ldquohow-tordquo books on a range of topics and has also authored many books and software programs for youth with disabilities She has presented thousands of workshops throughout North and South America Australia Europe and Africa and is a founding member and Fellow of the International Society for Augmentative and Alternative Communication
MAUREEN NEVERS MS CCC-SLP LICENSED SPEECH-LANGUAGE PATHOLOGIST AUGMENTATIVE COMMUNICATION SPECIALISTMaureen earned a BS in Communication Disorders from the University of Massachusetts at Amherst in 1991 then earned a MS in Speech-Language
Pathology from the University of Vermont in 1993 Her graduate work included participation in a comprehensive training program in AAC She worked for Easter Seals in Massachusetts for eleven years before joining the Center on Disability and Community Inclusion at the University of Vermont eleven years ago She currently works as an Augmentative Communication Specialist with the Vermont I-Team where she is part of an interdisciplinary team that consults with school teams across the state to support individuals with complex communication needs
Communication training you can understand and use
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
MARY-LOUISE BERTRAMMary-Louise Bertram is a qualified Early Childhood Teacher from Perth Western Australia with special qualifications and training in the areas of communication sensory processing and literacy supports for children with complex disabilities Mary-Louise became involved with the AS community in 2007 while
teaching a class of six children four of whom had AS (all Del +) Since then Mary-Louise has worked with people with AS of all ages across Western Australia in the first statewide comprehensive AS-specific communication intervention of its kind She has supported families across the globe to advocate for their childrsquos right to high-quality communication and education intervention Mary-Louise currently works in private practice supporting individuals with complex disabilities (and their families) with communication and literacy
Families are also encouraged to support each other and share tips via the Seriesrsquo private ASF Communication Training Series Facebook group
Twenty years ago we never would have imagined that so many generous people like you would open their hearts to help those affected by AS Your generosity eases the financial and emotional burden on families by supporting our family resource program and has helped our researchers make significant breakthroughs in treatments and potential cures for AS Without you there would be no us We are forever grateful for your support
Click here to make a contribution to the ASFrsquos end-of-year appeal All donations are 100 tax deductible per IRS regulations
Itrsquos ALL because of YOU
WWWANGELMANTODAYCOM November December 2015
By Cass Gamero
My sons name is Alexander and he was
recently diagnosed in July 2015 Hes only
18 months old and is loved by all Anyone
who meets him cant help but be
memorized by his long eye lashes amp
beaming smile When you see him you
cant help but smile My son also has some
vision problems but is getting better He
loves his toy keys and could recognize his
bottle from anywhere Hes lovable
friendly joyful and bright
Angels in Action Celebrating the Abilities of our Angels
Gareth Edwards (Star Wars Director) acknowledges
The force is strong in the Angelman Alliance
It is often said that parents will do anything for their children A rare
disease called Angelman Syndrome is proving testimony to this fact
Driven by an unstoppable love for their children parent organisations
from 15 countries have formed an alliance to work together to progress
research that may help their children to speak run and live life to their
full potential As Gareth Edwards patron of the UK Charity that hosted
this yearsrsquo conference in Liverpool England said during his speech at
the conference ldquoAngels go further and beyondrdquo
With the support of ISIS pharmaceuticals recent findings by professor Art Beaudet (USA) are expected to
progress to clinical trials Results from other researchers in collaboration with pharmaceutical companies
also have promising results to improve the quality of life for children amp adults with Angelman Syndrome
Initially having to overcome language barriers cultural differences and different legal systems the parent
organisations created an international Alliance on Angelman Syndrome (ASA) to drive research forward
pooling resources and funds In the first two years over half a million eurorsquos (550000-) was raised with
more parent organisations worldwide continuing to join The parent organisations met this year in
Liverpool during the 50th anniversary of Angelman Syndrome At this conference representatives came
from England Ireland Belgium Netherlands Germany Austria France Italy Portugal Japan Israel
Hungary Poland Finland and Switzerland
As professor Ype Elgersma (NL) said ldquoThese are very exciting times because we might actually have the
possibility to reverse a severe genetic diseaserdquo Therefore the need to get things going is stronger than ever
within the Alliance and the need for more funding is evident Because in the end every parent wants their
child to be as happy and healthy as possible
Everything we do we do for our Angels wwwangelmanallianceor g
For information about the Alliance the research and other questions you can contact Betty Willemsen
bettywillemsenninafoundationeu
Dr Harry Angelman
1915 ndash 1996
El Dr Harry Angelman fue un meacutedico Ingleacutes quien
identificoacute lo que hoy en diacutea se llama Siacutendrome de
Angelman
Nacioacute en Birkenhead Inglaterra Le fascinaba el idioma
y la cultura de Italia
El fue el primero quien observoacute treacutes nintildeos no
relacionados quienes demostraban siacutentomas similares ndash
atrasos severos intelectuales un modo de andar que era
espasmoacutedico y riacutegido ausencia del hablar
convulsiones y una disposicioacuten contento
Luego duranted unas vacaciones en Italia descubrioacute
una pintura llamada ldquoUn Nintildeo con una Marionetardquo
creado por el artista del Renascimiento Giovanni
Francesco Caroto en el museo Castelvecchio en
Verona La pintura le hizo pensar en los nintildeos que eran
sus pacientes y le condujo a publicar un artiacuteculo
profesional en el antildeo 1965 que describiacutea lo que el
llamaba ldquoNintildeos Marionetasrdquo En aquel momento la
importancia de su artiacuteculo no fue reconocido como algo
importante
No pasoacute nada mas hasta Charles A Williams y Jaime L
Frias del departamento de Pediacuteatra Divisiacuteon de
Geneacutetica de la Universidad de Florida Colegio de
Medicina de Gainesville Florida sometieron un
artiacuteculo a la Revista Americana de Geneacutetica Meacutedica
explicando estudios de seacuteis pacientes comparando sus
datos con los de informes previos ndash incluyendo atrasos
intelectuales severos el andar como un ldquomarionetardquo
anormalidades cranio-faciales y espisodios frecuentes
de risas De repente se notoacute que eso era mucho maacutes
comuacuten de lo que anteriormente se creiacutea Ellos
propusieron ponerle el nombre de Siacutendrome de
Angelman en honor del Dr Harry Angelman
La Historia del Siacutendrome de Angelman (Spanish Translation)
Angelman Today
Gareth Edwards (Directeur de Star Wars) lrsquoaffirme la Force est avec lrsquoAngelman Syndrome Alliance (ASA)
On dit souvent que les parents feraient tout pour leurs enfants et crsquoest ce qui se veacuterifie agrave lrsquooccasion drsquoune maladie rare appeleacutee le syndrome drsquoAngelman Animeacutees drsquoun amour infini pour leurs enfants des organisations parentales de 15 pays ont formeacute une alliance dans le but de faire avancer la recherche qui permettra agrave ces enfants de parler courir et vivre leur vie pleinement Comme lrsquoaffirmait dans son intervention Gareth Edwards soutien de lrsquoassociation de bienfaisance anglaise qui accueillait cette anneacutee la confeacuterence internationale agrave Liverpool laquo Les Anges vont plus loin et au-delagrave raquo
De reacutecentes deacutecouvertes dues par le Professeur Art Beaudet (USA) avec le soutien des laboratoires pharmaceutiques ISIS vont conduire agrave des essais cliniques Drsquoautres chercheurs soutenus par des socieacuteteacutes pharmaceutiques ont obtenu des reacutesultats prometteurs pour ameacuteliorer la qualiteacute de vie des enfants et des adultes atteints du syndrome drsquoAngelman
Surmontant les obstacles dus aux langues aux diffeacuterences culturelles et leacutegales les organisations parentales ont creacuteeacute lrsquoAlliance du Syndrome drsquoAngelman (ASA) visant agrave faire progresser la recherche et agrave mettre en commun les ressources et les financements Dans les deux premiegraveres anneacutees 550 000 euro ont eacuteteacute reacuteunis et drsquoautres organisations venues du monde entier souhaitent srsquoy associer Cette anneacutee les organisations de parents se sont rencontreacutees agrave Liverpool dans le cadre du 50egraveme anniversaire de lrsquoidentification du syndrome Eacutetaient repreacutesenteacutes lrsquoAngleterre lrsquoIrlande la Belgique les Pays Bas lrsquoAllemagne lrsquoAutriche la France lrsquoItalie le Portugal le Japon Israeumll la Hongrie la Pologne la Finlande et la Suisse
Comme le disait le Professeur Ype Elgersma (NL) laquo Nous vivons des temps prometteurs car nous sommes en mesure drsquoinverser une grave maladie geacuteneacutetique raquo Crsquoest pourquoi il est de plus en plus neacutecessaire de renforcer notre action et de trouver drsquoautres financements Parce qursquoil est clair que chaque parent souhaite que son enfant vive heureux et en bonne santeacute
Tout ce que nous faisons nous le faisons pour nos Anges wwwangelmanallianceorg
Pour toute information sur lrsquoAlliance la recherche et drsquoautres questions vous pouvez contacter Betty Willemsen bettywillemsenninafoundationeu
Angelman Today
God only gives us what He is willing to walk us through
-Joell Gingrich Ketcham
ldquo ldquo
ldquo
Adding youtube video
platform to Angelman Today
Video content will include bull Interviews
bull Product Reviews
bull Latest Research
bull How To videos
bull Parent tips and interviews
bull Much more
Email Lizzieangelmantodaycom if you
would like to participate
Announcements
We are expanding Angelman Today to include a new
platform of video media
To do this we will be making some changes that will
include the publishing schedule for the online digital
magazine Starting in January 2016 we will start
publishing Angelman Today quarterly 4 information-
packed editions a year
Subscriptions of the online magazine will remain
FREE
Subscribing to the YouTube channel is also FREE
We welcome all Angelman foundations parents
care takers physicians and researchers to
contribute Deadlines are
bull December 10
bull March 10
bull June 10
bull September 10
Show your support for Angelman Today and subscribe
WWWANGELMANTODAYCOM November December 2015
Toby B Kroger in Kentucky Scotty at Wegmans in NY
There are many challenges that come along with being
a caretaker of an individual with special needs
including a task that for many may be simple a trip
that we all must do regularly which is shop for
groceries
The best inventions are usually created from a persons
desire to satisfy a need or to solve a problem they
encounter in their own life One set of parents did just
that Drew Ann and David Long have three children
Caroline is their middle child she was diagnosed with
Rett syndrome The challenge came when Drew Ann
went grocery shopping with her kids She had a
Making Shopping A Little
Easier This Holiday Season helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
toddler and Caroline in her wheelchair The problem
presented itself as in the form of a question ldquoHow
do you push a wheelchair and a shopping cartrdquo
Drew Ann had the answer She was able to vision the
cart and sat in her car and sketched it out on paper
She knew she was not the first to have this dilemma
nor would she be the last
Carolinersquos Carts can now be found at some select
retailers You can visit wwwcarolinescartcom to
find a location near you
Parents we need your help We at Angelman Today
are calling for action There are not enough stores
with Carolinersquos carts Parents it is up to us We are
the ones that need them so we have to be the ones to
request them at our local retailers Some stores like
Target Shoprite Publix Lucky and Wegmans are
starting to have them available If they are not
currently at a store near you just ask the manager
You will be helping not only your family but the
many other families that may not yet even know this
helpful cart exists
WWWANGELMANTODAYCOM November December 2015
Thank you A big thanks to all of the contributors that help bring you Angelman Today
Angelman Today Supporters
If I Need Help ndash wwwifineedhelporg
All of the Angelman and
Associated
Foundations
across the globe
Additional Contributors
Kat Adams
Maria Cano Moraleda
Erin Bates
Angelman Today is a lifestyle guide to achieving better health for individuals with Angelman Syndrome and their families It is written with your needs in mind but is not a substitute for consulting with your physician or other health care providers The publisher and authors are not responsible for any adverse effects or consequences resulting from the use of the suggestions products or procedures that appear on this website or online magazine All matters regarding your health should be supervised by a licensed health care physician Copyright 2014 Angelman Today LLC All rights reserved worldwide
CONTRIBUTORS
Marilyn Kennedy
Assistant Editor Marilynangelmantodaycom
Sybille Kraft Bellamy
Parent Expert in Nutrition
And LGIT diet FacebookcomAngelmanSyndromeDiet
STAY CONNECTED ON THE GO
DOWNLOAD THE NEW ISSUU APP TODAY ON GOOGLE PLAY
AND NOW IN THE APP STORE
Dr Harry Angelman
1915 ndash 1996
Dr Harry Angelman was an English physician
who identified what is now known as Angelman
Syndrome
He first observed three children who were not
related but showed similar symptoms of severe
intellectual delay stiff jerky gait lack of speech
seizures motor disorders and happy demeanors
Although Dr Angelman was born in Birkenhead
England he was an enthusiast for the language
and country of Italy And it was while vacationing
in Italy he observed an oil painting called A Boy
with a Puppet by the renaissance artist Giovanni
Francesco Caroto at the Castelvecchio museum in
Verona Reminded of the children hersquod observed
Dr Angelman published a paper in 1965 that
described what he called ldquopuppet childrenrdquo At
this time his paper was not immediately
recognized as important
It wasnrsquot until 1982 when Charles A Williams
and Jaime L Frias of the department of Pediatrics
Division of Genetics University of Florida
College of Medicine Gainesville submitted a
paper to the American Journal of Medical
Genetics reporting studies of six patients and
comparing their data to those from previous
reports - severe developmental delay ldquopuppet-
likerdquo gait craniofacial abnormalities and frequent
episodes of laughter- that it became clear the
syndrome was more common than previously
thought They proposed the name of this disorder
be changed to Angelman Syndrome
The History of Angelman Syndrome
Angelman Today
Books Recommended by Parents
Connect with us on
Thanks for your support
Please Share Angelman Today
wwwangelmantodaycom
wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg
MARY-LOUISE BERTRAMMary-Louise Bertram is a qualified Early Childhood Teacher from Perth Western Australia with special qualifications and training in the areas of communication sensory processing and literacy supports for children with complex disabilities Mary-Louise became involved with the AS community in 2007 while
teaching a class of six children four of whom had AS (all Del +) Since then Mary-Louise has worked with people with AS of all ages across Western Australia in the first statewide comprehensive AS-specific communication intervention of its kind She has supported families across the globe to advocate for their childrsquos right to high-quality communication and education intervention Mary-Louise currently works in private practice supporting individuals with complex disabilities (and their families) with communication and literacy
Families are also encouraged to support each other and share tips via the Seriesrsquo private ASF Communication Training Series Facebook group
Twenty years ago we never would have imagined that so many generous people like you would open their hearts to help those affected by AS Your generosity eases the financial and emotional burden on families by supporting our family resource program and has helped our researchers make significant breakthroughs in treatments and potential cures for AS Without you there would be no us We are forever grateful for your support
Click here to make a contribution to the ASFrsquos end-of-year appeal All donations are 100 tax deductible per IRS regulations
Itrsquos ALL because of YOU
WWWANGELMANTODAYCOM November December 2015
By Cass Gamero
My sons name is Alexander and he was
recently diagnosed in July 2015 Hes only
18 months old and is loved by all Anyone
who meets him cant help but be
memorized by his long eye lashes amp
beaming smile When you see him you
cant help but smile My son also has some
vision problems but is getting better He
loves his toy keys and could recognize his
bottle from anywhere Hes lovable
friendly joyful and bright
Angels in Action Celebrating the Abilities of our Angels
Gareth Edwards (Star Wars Director) acknowledges
The force is strong in the Angelman Alliance
It is often said that parents will do anything for their children A rare
disease called Angelman Syndrome is proving testimony to this fact
Driven by an unstoppable love for their children parent organisations
from 15 countries have formed an alliance to work together to progress
research that may help their children to speak run and live life to their
full potential As Gareth Edwards patron of the UK Charity that hosted
this yearsrsquo conference in Liverpool England said during his speech at
the conference ldquoAngels go further and beyondrdquo
With the support of ISIS pharmaceuticals recent findings by professor Art Beaudet (USA) are expected to
progress to clinical trials Results from other researchers in collaboration with pharmaceutical companies
also have promising results to improve the quality of life for children amp adults with Angelman Syndrome
Initially having to overcome language barriers cultural differences and different legal systems the parent
organisations created an international Alliance on Angelman Syndrome (ASA) to drive research forward
pooling resources and funds In the first two years over half a million eurorsquos (550000-) was raised with
more parent organisations worldwide continuing to join The parent organisations met this year in
Liverpool during the 50th anniversary of Angelman Syndrome At this conference representatives came
from England Ireland Belgium Netherlands Germany Austria France Italy Portugal Japan Israel
Hungary Poland Finland and Switzerland
As professor Ype Elgersma (NL) said ldquoThese are very exciting times because we might actually have the
possibility to reverse a severe genetic diseaserdquo Therefore the need to get things going is stronger than ever
within the Alliance and the need for more funding is evident Because in the end every parent wants their
child to be as happy and healthy as possible
Everything we do we do for our Angels wwwangelmanallianceor g
For information about the Alliance the research and other questions you can contact Betty Willemsen
bettywillemsenninafoundationeu
Dr Harry Angelman
1915 ndash 1996
El Dr Harry Angelman fue un meacutedico Ingleacutes quien
identificoacute lo que hoy en diacutea se llama Siacutendrome de
Angelman
Nacioacute en Birkenhead Inglaterra Le fascinaba el idioma
y la cultura de Italia
El fue el primero quien observoacute treacutes nintildeos no
relacionados quienes demostraban siacutentomas similares ndash
atrasos severos intelectuales un modo de andar que era
espasmoacutedico y riacutegido ausencia del hablar
convulsiones y una disposicioacuten contento
Luego duranted unas vacaciones en Italia descubrioacute
una pintura llamada ldquoUn Nintildeo con una Marionetardquo
creado por el artista del Renascimiento Giovanni
Francesco Caroto en el museo Castelvecchio en
Verona La pintura le hizo pensar en los nintildeos que eran
sus pacientes y le condujo a publicar un artiacuteculo
profesional en el antildeo 1965 que describiacutea lo que el
llamaba ldquoNintildeos Marionetasrdquo En aquel momento la
importancia de su artiacuteculo no fue reconocido como algo
importante
No pasoacute nada mas hasta Charles A Williams y Jaime L
Frias del departamento de Pediacuteatra Divisiacuteon de
Geneacutetica de la Universidad de Florida Colegio de
Medicina de Gainesville Florida sometieron un
artiacuteculo a la Revista Americana de Geneacutetica Meacutedica
explicando estudios de seacuteis pacientes comparando sus
datos con los de informes previos ndash incluyendo atrasos
intelectuales severos el andar como un ldquomarionetardquo
anormalidades cranio-faciales y espisodios frecuentes
de risas De repente se notoacute que eso era mucho maacutes
comuacuten de lo que anteriormente se creiacutea Ellos
propusieron ponerle el nombre de Siacutendrome de
Angelman en honor del Dr Harry Angelman
La Historia del Siacutendrome de Angelman (Spanish Translation)
Angelman Today
Gareth Edwards (Directeur de Star Wars) lrsquoaffirme la Force est avec lrsquoAngelman Syndrome Alliance (ASA)
On dit souvent que les parents feraient tout pour leurs enfants et crsquoest ce qui se veacuterifie agrave lrsquooccasion drsquoune maladie rare appeleacutee le syndrome drsquoAngelman Animeacutees drsquoun amour infini pour leurs enfants des organisations parentales de 15 pays ont formeacute une alliance dans le but de faire avancer la recherche qui permettra agrave ces enfants de parler courir et vivre leur vie pleinement Comme lrsquoaffirmait dans son intervention Gareth Edwards soutien de lrsquoassociation de bienfaisance anglaise qui accueillait cette anneacutee la confeacuterence internationale agrave Liverpool laquo Les Anges vont plus loin et au-delagrave raquo
De reacutecentes deacutecouvertes dues par le Professeur Art Beaudet (USA) avec le soutien des laboratoires pharmaceutiques ISIS vont conduire agrave des essais cliniques Drsquoautres chercheurs soutenus par des socieacuteteacutes pharmaceutiques ont obtenu des reacutesultats prometteurs pour ameacuteliorer la qualiteacute de vie des enfants et des adultes atteints du syndrome drsquoAngelman
Surmontant les obstacles dus aux langues aux diffeacuterences culturelles et leacutegales les organisations parentales ont creacuteeacute lrsquoAlliance du Syndrome drsquoAngelman (ASA) visant agrave faire progresser la recherche et agrave mettre en commun les ressources et les financements Dans les deux premiegraveres anneacutees 550 000 euro ont eacuteteacute reacuteunis et drsquoautres organisations venues du monde entier souhaitent srsquoy associer Cette anneacutee les organisations de parents se sont rencontreacutees agrave Liverpool dans le cadre du 50egraveme anniversaire de lrsquoidentification du syndrome Eacutetaient repreacutesenteacutes lrsquoAngleterre lrsquoIrlande la Belgique les Pays Bas lrsquoAllemagne lrsquoAutriche la France lrsquoItalie le Portugal le Japon Israeumll la Hongrie la Pologne la Finlande et la Suisse
Comme le disait le Professeur Ype Elgersma (NL) laquo Nous vivons des temps prometteurs car nous sommes en mesure drsquoinverser une grave maladie geacuteneacutetique raquo Crsquoest pourquoi il est de plus en plus neacutecessaire de renforcer notre action et de trouver drsquoautres financements Parce qursquoil est clair que chaque parent souhaite que son enfant vive heureux et en bonne santeacute
Tout ce que nous faisons nous le faisons pour nos Anges wwwangelmanallianceorg
Pour toute information sur lrsquoAlliance la recherche et drsquoautres questions vous pouvez contacter Betty Willemsen bettywillemsenninafoundationeu
Angelman Today
God only gives us what He is willing to walk us through
-Joell Gingrich Ketcham
ldquo ldquo
ldquo
Adding youtube video
platform to Angelman Today
Video content will include bull Interviews
bull Product Reviews
bull Latest Research
bull How To videos
bull Parent tips and interviews
bull Much more
Email Lizzieangelmantodaycom if you
would like to participate
Announcements
We are expanding Angelman Today to include a new
platform of video media
To do this we will be making some changes that will
include the publishing schedule for the online digital
magazine Starting in January 2016 we will start
publishing Angelman Today quarterly 4 information-
packed editions a year
Subscriptions of the online magazine will remain
FREE
Subscribing to the YouTube channel is also FREE
We welcome all Angelman foundations parents
care takers physicians and researchers to
contribute Deadlines are
bull December 10
bull March 10
bull June 10
bull September 10
Show your support for Angelman Today and subscribe
WWWANGELMANTODAYCOM November December 2015
Toby B Kroger in Kentucky Scotty at Wegmans in NY
There are many challenges that come along with being
a caretaker of an individual with special needs
including a task that for many may be simple a trip
that we all must do regularly which is shop for
groceries
The best inventions are usually created from a persons
desire to satisfy a need or to solve a problem they
encounter in their own life One set of parents did just
that Drew Ann and David Long have three children
Caroline is their middle child she was diagnosed with
Rett syndrome The challenge came when Drew Ann
went grocery shopping with her kids She had a
Making Shopping A Little
Easier This Holiday Season helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
toddler and Caroline in her wheelchair The problem
presented itself as in the form of a question ldquoHow
do you push a wheelchair and a shopping cartrdquo
Drew Ann had the answer She was able to vision the
cart and sat in her car and sketched it out on paper
She knew she was not the first to have this dilemma
nor would she be the last
Carolinersquos Carts can now be found at some select
retailers You can visit wwwcarolinescartcom to
find a location near you
Parents we need your help We at Angelman Today
are calling for action There are not enough stores
with Carolinersquos carts Parents it is up to us We are
the ones that need them so we have to be the ones to
request them at our local retailers Some stores like
Target Shoprite Publix Lucky and Wegmans are
starting to have them available If they are not
currently at a store near you just ask the manager
You will be helping not only your family but the
many other families that may not yet even know this
helpful cart exists
WWWANGELMANTODAYCOM November December 2015
Thank you A big thanks to all of the contributors that help bring you Angelman Today
Angelman Today Supporters
If I Need Help ndash wwwifineedhelporg
All of the Angelman and
Associated
Foundations
across the globe
Additional Contributors
Kat Adams
Maria Cano Moraleda
Erin Bates
Angelman Today is a lifestyle guide to achieving better health for individuals with Angelman Syndrome and their families It is written with your needs in mind but is not a substitute for consulting with your physician or other health care providers The publisher and authors are not responsible for any adverse effects or consequences resulting from the use of the suggestions products or procedures that appear on this website or online magazine All matters regarding your health should be supervised by a licensed health care physician Copyright 2014 Angelman Today LLC All rights reserved worldwide
CONTRIBUTORS
Marilyn Kennedy
Assistant Editor Marilynangelmantodaycom
Sybille Kraft Bellamy
Parent Expert in Nutrition
And LGIT diet FacebookcomAngelmanSyndromeDiet
STAY CONNECTED ON THE GO
DOWNLOAD THE NEW ISSUU APP TODAY ON GOOGLE PLAY
AND NOW IN THE APP STORE
Dr Harry Angelman
1915 ndash 1996
Dr Harry Angelman was an English physician
who identified what is now known as Angelman
Syndrome
He first observed three children who were not
related but showed similar symptoms of severe
intellectual delay stiff jerky gait lack of speech
seizures motor disorders and happy demeanors
Although Dr Angelman was born in Birkenhead
England he was an enthusiast for the language
and country of Italy And it was while vacationing
in Italy he observed an oil painting called A Boy
with a Puppet by the renaissance artist Giovanni
Francesco Caroto at the Castelvecchio museum in
Verona Reminded of the children hersquod observed
Dr Angelman published a paper in 1965 that
described what he called ldquopuppet childrenrdquo At
this time his paper was not immediately
recognized as important
It wasnrsquot until 1982 when Charles A Williams
and Jaime L Frias of the department of Pediatrics
Division of Genetics University of Florida
College of Medicine Gainesville submitted a
paper to the American Journal of Medical
Genetics reporting studies of six patients and
comparing their data to those from previous
reports - severe developmental delay ldquopuppet-
likerdquo gait craniofacial abnormalities and frequent
episodes of laughter- that it became clear the
syndrome was more common than previously
thought They proposed the name of this disorder
be changed to Angelman Syndrome
The History of Angelman Syndrome
Angelman Today
Books Recommended by Parents
Connect with us on
Thanks for your support
Please Share Angelman Today
wwwangelmantodaycom
WWWANGELMANTODAYCOM November December 2015
By Cass Gamero
My sons name is Alexander and he was
recently diagnosed in July 2015 Hes only
18 months old and is loved by all Anyone
who meets him cant help but be
memorized by his long eye lashes amp
beaming smile When you see him you
cant help but smile My son also has some
vision problems but is getting better He
loves his toy keys and could recognize his
bottle from anywhere Hes lovable
friendly joyful and bright
Angels in Action Celebrating the Abilities of our Angels
Gareth Edwards (Star Wars Director) acknowledges
The force is strong in the Angelman Alliance
It is often said that parents will do anything for their children A rare
disease called Angelman Syndrome is proving testimony to this fact
Driven by an unstoppable love for their children parent organisations
from 15 countries have formed an alliance to work together to progress
research that may help their children to speak run and live life to their
full potential As Gareth Edwards patron of the UK Charity that hosted
this yearsrsquo conference in Liverpool England said during his speech at
the conference ldquoAngels go further and beyondrdquo
With the support of ISIS pharmaceuticals recent findings by professor Art Beaudet (USA) are expected to
progress to clinical trials Results from other researchers in collaboration with pharmaceutical companies
also have promising results to improve the quality of life for children amp adults with Angelman Syndrome
Initially having to overcome language barriers cultural differences and different legal systems the parent
organisations created an international Alliance on Angelman Syndrome (ASA) to drive research forward
pooling resources and funds In the first two years over half a million eurorsquos (550000-) was raised with
more parent organisations worldwide continuing to join The parent organisations met this year in
Liverpool during the 50th anniversary of Angelman Syndrome At this conference representatives came
from England Ireland Belgium Netherlands Germany Austria France Italy Portugal Japan Israel
Hungary Poland Finland and Switzerland
As professor Ype Elgersma (NL) said ldquoThese are very exciting times because we might actually have the
possibility to reverse a severe genetic diseaserdquo Therefore the need to get things going is stronger than ever
within the Alliance and the need for more funding is evident Because in the end every parent wants their
child to be as happy and healthy as possible
Everything we do we do for our Angels wwwangelmanallianceor g
For information about the Alliance the research and other questions you can contact Betty Willemsen
bettywillemsenninafoundationeu
Dr Harry Angelman
1915 ndash 1996
El Dr Harry Angelman fue un meacutedico Ingleacutes quien
identificoacute lo que hoy en diacutea se llama Siacutendrome de
Angelman
Nacioacute en Birkenhead Inglaterra Le fascinaba el idioma
y la cultura de Italia
El fue el primero quien observoacute treacutes nintildeos no
relacionados quienes demostraban siacutentomas similares ndash
atrasos severos intelectuales un modo de andar que era
espasmoacutedico y riacutegido ausencia del hablar
convulsiones y una disposicioacuten contento
Luego duranted unas vacaciones en Italia descubrioacute
una pintura llamada ldquoUn Nintildeo con una Marionetardquo
creado por el artista del Renascimiento Giovanni
Francesco Caroto en el museo Castelvecchio en
Verona La pintura le hizo pensar en los nintildeos que eran
sus pacientes y le condujo a publicar un artiacuteculo
profesional en el antildeo 1965 que describiacutea lo que el
llamaba ldquoNintildeos Marionetasrdquo En aquel momento la
importancia de su artiacuteculo no fue reconocido como algo
importante
No pasoacute nada mas hasta Charles A Williams y Jaime L
Frias del departamento de Pediacuteatra Divisiacuteon de
Geneacutetica de la Universidad de Florida Colegio de
Medicina de Gainesville Florida sometieron un
artiacuteculo a la Revista Americana de Geneacutetica Meacutedica
explicando estudios de seacuteis pacientes comparando sus
datos con los de informes previos ndash incluyendo atrasos
intelectuales severos el andar como un ldquomarionetardquo
anormalidades cranio-faciales y espisodios frecuentes
de risas De repente se notoacute que eso era mucho maacutes
comuacuten de lo que anteriormente se creiacutea Ellos
propusieron ponerle el nombre de Siacutendrome de
Angelman en honor del Dr Harry Angelman
La Historia del Siacutendrome de Angelman (Spanish Translation)
Angelman Today
Gareth Edwards (Directeur de Star Wars) lrsquoaffirme la Force est avec lrsquoAngelman Syndrome Alliance (ASA)
On dit souvent que les parents feraient tout pour leurs enfants et crsquoest ce qui se veacuterifie agrave lrsquooccasion drsquoune maladie rare appeleacutee le syndrome drsquoAngelman Animeacutees drsquoun amour infini pour leurs enfants des organisations parentales de 15 pays ont formeacute une alliance dans le but de faire avancer la recherche qui permettra agrave ces enfants de parler courir et vivre leur vie pleinement Comme lrsquoaffirmait dans son intervention Gareth Edwards soutien de lrsquoassociation de bienfaisance anglaise qui accueillait cette anneacutee la confeacuterence internationale agrave Liverpool laquo Les Anges vont plus loin et au-delagrave raquo
De reacutecentes deacutecouvertes dues par le Professeur Art Beaudet (USA) avec le soutien des laboratoires pharmaceutiques ISIS vont conduire agrave des essais cliniques Drsquoautres chercheurs soutenus par des socieacuteteacutes pharmaceutiques ont obtenu des reacutesultats prometteurs pour ameacuteliorer la qualiteacute de vie des enfants et des adultes atteints du syndrome drsquoAngelman
Surmontant les obstacles dus aux langues aux diffeacuterences culturelles et leacutegales les organisations parentales ont creacuteeacute lrsquoAlliance du Syndrome drsquoAngelman (ASA) visant agrave faire progresser la recherche et agrave mettre en commun les ressources et les financements Dans les deux premiegraveres anneacutees 550 000 euro ont eacuteteacute reacuteunis et drsquoautres organisations venues du monde entier souhaitent srsquoy associer Cette anneacutee les organisations de parents se sont rencontreacutees agrave Liverpool dans le cadre du 50egraveme anniversaire de lrsquoidentification du syndrome Eacutetaient repreacutesenteacutes lrsquoAngleterre lrsquoIrlande la Belgique les Pays Bas lrsquoAllemagne lrsquoAutriche la France lrsquoItalie le Portugal le Japon Israeumll la Hongrie la Pologne la Finlande et la Suisse
Comme le disait le Professeur Ype Elgersma (NL) laquo Nous vivons des temps prometteurs car nous sommes en mesure drsquoinverser une grave maladie geacuteneacutetique raquo Crsquoest pourquoi il est de plus en plus neacutecessaire de renforcer notre action et de trouver drsquoautres financements Parce qursquoil est clair que chaque parent souhaite que son enfant vive heureux et en bonne santeacute
Tout ce que nous faisons nous le faisons pour nos Anges wwwangelmanallianceorg
Pour toute information sur lrsquoAlliance la recherche et drsquoautres questions vous pouvez contacter Betty Willemsen bettywillemsenninafoundationeu
Angelman Today
God only gives us what He is willing to walk us through
-Joell Gingrich Ketcham
ldquo ldquo
ldquo
Adding youtube video
platform to Angelman Today
Video content will include bull Interviews
bull Product Reviews
bull Latest Research
bull How To videos
bull Parent tips and interviews
bull Much more
Email Lizzieangelmantodaycom if you
would like to participate
Announcements
We are expanding Angelman Today to include a new
platform of video media
To do this we will be making some changes that will
include the publishing schedule for the online digital
magazine Starting in January 2016 we will start
publishing Angelman Today quarterly 4 information-
packed editions a year
Subscriptions of the online magazine will remain
FREE
Subscribing to the YouTube channel is also FREE
We welcome all Angelman foundations parents
care takers physicians and researchers to
contribute Deadlines are
bull December 10
bull March 10
bull June 10
bull September 10
Show your support for Angelman Today and subscribe
WWWANGELMANTODAYCOM November December 2015
Toby B Kroger in Kentucky Scotty at Wegmans in NY
There are many challenges that come along with being
a caretaker of an individual with special needs
including a task that for many may be simple a trip
that we all must do regularly which is shop for
groceries
The best inventions are usually created from a persons
desire to satisfy a need or to solve a problem they
encounter in their own life One set of parents did just
that Drew Ann and David Long have three children
Caroline is their middle child she was diagnosed with
Rett syndrome The challenge came when Drew Ann
went grocery shopping with her kids She had a
Making Shopping A Little
Easier This Holiday Season helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
toddler and Caroline in her wheelchair The problem
presented itself as in the form of a question ldquoHow
do you push a wheelchair and a shopping cartrdquo
Drew Ann had the answer She was able to vision the
cart and sat in her car and sketched it out on paper
She knew she was not the first to have this dilemma
nor would she be the last
Carolinersquos Carts can now be found at some select
retailers You can visit wwwcarolinescartcom to
find a location near you
Parents we need your help We at Angelman Today
are calling for action There are not enough stores
with Carolinersquos carts Parents it is up to us We are
the ones that need them so we have to be the ones to
request them at our local retailers Some stores like
Target Shoprite Publix Lucky and Wegmans are
starting to have them available If they are not
currently at a store near you just ask the manager
You will be helping not only your family but the
many other families that may not yet even know this
helpful cart exists
WWWANGELMANTODAYCOM November December 2015
Thank you A big thanks to all of the contributors that help bring you Angelman Today
Angelman Today Supporters
If I Need Help ndash wwwifineedhelporg
All of the Angelman and
Associated
Foundations
across the globe
Additional Contributors
Kat Adams
Maria Cano Moraleda
Erin Bates
Angelman Today is a lifestyle guide to achieving better health for individuals with Angelman Syndrome and their families It is written with your needs in mind but is not a substitute for consulting with your physician or other health care providers The publisher and authors are not responsible for any adverse effects or consequences resulting from the use of the suggestions products or procedures that appear on this website or online magazine All matters regarding your health should be supervised by a licensed health care physician Copyright 2014 Angelman Today LLC All rights reserved worldwide
CONTRIBUTORS
Marilyn Kennedy
Assistant Editor Marilynangelmantodaycom
Sybille Kraft Bellamy
Parent Expert in Nutrition
And LGIT diet FacebookcomAngelmanSyndromeDiet
STAY CONNECTED ON THE GO
DOWNLOAD THE NEW ISSUU APP TODAY ON GOOGLE PLAY
AND NOW IN THE APP STORE
Dr Harry Angelman
1915 ndash 1996
Dr Harry Angelman was an English physician
who identified what is now known as Angelman
Syndrome
He first observed three children who were not
related but showed similar symptoms of severe
intellectual delay stiff jerky gait lack of speech
seizures motor disorders and happy demeanors
Although Dr Angelman was born in Birkenhead
England he was an enthusiast for the language
and country of Italy And it was while vacationing
in Italy he observed an oil painting called A Boy
with a Puppet by the renaissance artist Giovanni
Francesco Caroto at the Castelvecchio museum in
Verona Reminded of the children hersquod observed
Dr Angelman published a paper in 1965 that
described what he called ldquopuppet childrenrdquo At
this time his paper was not immediately
recognized as important
It wasnrsquot until 1982 when Charles A Williams
and Jaime L Frias of the department of Pediatrics
Division of Genetics University of Florida
College of Medicine Gainesville submitted a
paper to the American Journal of Medical
Genetics reporting studies of six patients and
comparing their data to those from previous
reports - severe developmental delay ldquopuppet-
likerdquo gait craniofacial abnormalities and frequent
episodes of laughter- that it became clear the
syndrome was more common than previously
thought They proposed the name of this disorder
be changed to Angelman Syndrome
The History of Angelman Syndrome
Angelman Today
Books Recommended by Parents
Connect with us on
Thanks for your support
Please Share Angelman Today
wwwangelmantodaycom
Gareth Edwards (Star Wars Director) acknowledges
The force is strong in the Angelman Alliance
It is often said that parents will do anything for their children A rare
disease called Angelman Syndrome is proving testimony to this fact
Driven by an unstoppable love for their children parent organisations
from 15 countries have formed an alliance to work together to progress
research that may help their children to speak run and live life to their
full potential As Gareth Edwards patron of the UK Charity that hosted
this yearsrsquo conference in Liverpool England said during his speech at
the conference ldquoAngels go further and beyondrdquo
With the support of ISIS pharmaceuticals recent findings by professor Art Beaudet (USA) are expected to
progress to clinical trials Results from other researchers in collaboration with pharmaceutical companies
also have promising results to improve the quality of life for children amp adults with Angelman Syndrome
Initially having to overcome language barriers cultural differences and different legal systems the parent
organisations created an international Alliance on Angelman Syndrome (ASA) to drive research forward
pooling resources and funds In the first two years over half a million eurorsquos (550000-) was raised with
more parent organisations worldwide continuing to join The parent organisations met this year in
Liverpool during the 50th anniversary of Angelman Syndrome At this conference representatives came
from England Ireland Belgium Netherlands Germany Austria France Italy Portugal Japan Israel
Hungary Poland Finland and Switzerland
As professor Ype Elgersma (NL) said ldquoThese are very exciting times because we might actually have the
possibility to reverse a severe genetic diseaserdquo Therefore the need to get things going is stronger than ever
within the Alliance and the need for more funding is evident Because in the end every parent wants their
child to be as happy and healthy as possible
Everything we do we do for our Angels wwwangelmanallianceor g
For information about the Alliance the research and other questions you can contact Betty Willemsen
bettywillemsenninafoundationeu
Dr Harry Angelman
1915 ndash 1996
El Dr Harry Angelman fue un meacutedico Ingleacutes quien
identificoacute lo que hoy en diacutea se llama Siacutendrome de
Angelman
Nacioacute en Birkenhead Inglaterra Le fascinaba el idioma
y la cultura de Italia
El fue el primero quien observoacute treacutes nintildeos no
relacionados quienes demostraban siacutentomas similares ndash
atrasos severos intelectuales un modo de andar que era
espasmoacutedico y riacutegido ausencia del hablar
convulsiones y una disposicioacuten contento
Luego duranted unas vacaciones en Italia descubrioacute
una pintura llamada ldquoUn Nintildeo con una Marionetardquo
creado por el artista del Renascimiento Giovanni
Francesco Caroto en el museo Castelvecchio en
Verona La pintura le hizo pensar en los nintildeos que eran
sus pacientes y le condujo a publicar un artiacuteculo
profesional en el antildeo 1965 que describiacutea lo que el
llamaba ldquoNintildeos Marionetasrdquo En aquel momento la
importancia de su artiacuteculo no fue reconocido como algo
importante
No pasoacute nada mas hasta Charles A Williams y Jaime L
Frias del departamento de Pediacuteatra Divisiacuteon de
Geneacutetica de la Universidad de Florida Colegio de
Medicina de Gainesville Florida sometieron un
artiacuteculo a la Revista Americana de Geneacutetica Meacutedica
explicando estudios de seacuteis pacientes comparando sus
datos con los de informes previos ndash incluyendo atrasos
intelectuales severos el andar como un ldquomarionetardquo
anormalidades cranio-faciales y espisodios frecuentes
de risas De repente se notoacute que eso era mucho maacutes
comuacuten de lo que anteriormente se creiacutea Ellos
propusieron ponerle el nombre de Siacutendrome de
Angelman en honor del Dr Harry Angelman
La Historia del Siacutendrome de Angelman (Spanish Translation)
Angelman Today
Gareth Edwards (Directeur de Star Wars) lrsquoaffirme la Force est avec lrsquoAngelman Syndrome Alliance (ASA)
On dit souvent que les parents feraient tout pour leurs enfants et crsquoest ce qui se veacuterifie agrave lrsquooccasion drsquoune maladie rare appeleacutee le syndrome drsquoAngelman Animeacutees drsquoun amour infini pour leurs enfants des organisations parentales de 15 pays ont formeacute une alliance dans le but de faire avancer la recherche qui permettra agrave ces enfants de parler courir et vivre leur vie pleinement Comme lrsquoaffirmait dans son intervention Gareth Edwards soutien de lrsquoassociation de bienfaisance anglaise qui accueillait cette anneacutee la confeacuterence internationale agrave Liverpool laquo Les Anges vont plus loin et au-delagrave raquo
De reacutecentes deacutecouvertes dues par le Professeur Art Beaudet (USA) avec le soutien des laboratoires pharmaceutiques ISIS vont conduire agrave des essais cliniques Drsquoautres chercheurs soutenus par des socieacuteteacutes pharmaceutiques ont obtenu des reacutesultats prometteurs pour ameacuteliorer la qualiteacute de vie des enfants et des adultes atteints du syndrome drsquoAngelman
Surmontant les obstacles dus aux langues aux diffeacuterences culturelles et leacutegales les organisations parentales ont creacuteeacute lrsquoAlliance du Syndrome drsquoAngelman (ASA) visant agrave faire progresser la recherche et agrave mettre en commun les ressources et les financements Dans les deux premiegraveres anneacutees 550 000 euro ont eacuteteacute reacuteunis et drsquoautres organisations venues du monde entier souhaitent srsquoy associer Cette anneacutee les organisations de parents se sont rencontreacutees agrave Liverpool dans le cadre du 50egraveme anniversaire de lrsquoidentification du syndrome Eacutetaient repreacutesenteacutes lrsquoAngleterre lrsquoIrlande la Belgique les Pays Bas lrsquoAllemagne lrsquoAutriche la France lrsquoItalie le Portugal le Japon Israeumll la Hongrie la Pologne la Finlande et la Suisse
Comme le disait le Professeur Ype Elgersma (NL) laquo Nous vivons des temps prometteurs car nous sommes en mesure drsquoinverser une grave maladie geacuteneacutetique raquo Crsquoest pourquoi il est de plus en plus neacutecessaire de renforcer notre action et de trouver drsquoautres financements Parce qursquoil est clair que chaque parent souhaite que son enfant vive heureux et en bonne santeacute
Tout ce que nous faisons nous le faisons pour nos Anges wwwangelmanallianceorg
Pour toute information sur lrsquoAlliance la recherche et drsquoautres questions vous pouvez contacter Betty Willemsen bettywillemsenninafoundationeu
Angelman Today
God only gives us what He is willing to walk us through
-Joell Gingrich Ketcham
ldquo ldquo
ldquo
Adding youtube video
platform to Angelman Today
Video content will include bull Interviews
bull Product Reviews
bull Latest Research
bull How To videos
bull Parent tips and interviews
bull Much more
Email Lizzieangelmantodaycom if you
would like to participate
Announcements
We are expanding Angelman Today to include a new
platform of video media
To do this we will be making some changes that will
include the publishing schedule for the online digital
magazine Starting in January 2016 we will start
publishing Angelman Today quarterly 4 information-
packed editions a year
Subscriptions of the online magazine will remain
FREE
Subscribing to the YouTube channel is also FREE
We welcome all Angelman foundations parents
care takers physicians and researchers to
contribute Deadlines are
bull December 10
bull March 10
bull June 10
bull September 10
Show your support for Angelman Today and subscribe
WWWANGELMANTODAYCOM November December 2015
Toby B Kroger in Kentucky Scotty at Wegmans in NY
There are many challenges that come along with being
a caretaker of an individual with special needs
including a task that for many may be simple a trip
that we all must do regularly which is shop for
groceries
The best inventions are usually created from a persons
desire to satisfy a need or to solve a problem they
encounter in their own life One set of parents did just
that Drew Ann and David Long have three children
Caroline is their middle child she was diagnosed with
Rett syndrome The challenge came when Drew Ann
went grocery shopping with her kids She had a
Making Shopping A Little
Easier This Holiday Season helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
toddler and Caroline in her wheelchair The problem
presented itself as in the form of a question ldquoHow
do you push a wheelchair and a shopping cartrdquo
Drew Ann had the answer She was able to vision the
cart and sat in her car and sketched it out on paper
She knew she was not the first to have this dilemma
nor would she be the last
Carolinersquos Carts can now be found at some select
retailers You can visit wwwcarolinescartcom to
find a location near you
Parents we need your help We at Angelman Today
are calling for action There are not enough stores
with Carolinersquos carts Parents it is up to us We are
the ones that need them so we have to be the ones to
request them at our local retailers Some stores like
Target Shoprite Publix Lucky and Wegmans are
starting to have them available If they are not
currently at a store near you just ask the manager
You will be helping not only your family but the
many other families that may not yet even know this
helpful cart exists
WWWANGELMANTODAYCOM November December 2015
Thank you A big thanks to all of the contributors that help bring you Angelman Today
Angelman Today Supporters
If I Need Help ndash wwwifineedhelporg
All of the Angelman and
Associated
Foundations
across the globe
Additional Contributors
Kat Adams
Maria Cano Moraleda
Erin Bates
Angelman Today is a lifestyle guide to achieving better health for individuals with Angelman Syndrome and their families It is written with your needs in mind but is not a substitute for consulting with your physician or other health care providers The publisher and authors are not responsible for any adverse effects or consequences resulting from the use of the suggestions products or procedures that appear on this website or online magazine All matters regarding your health should be supervised by a licensed health care physician Copyright 2014 Angelman Today LLC All rights reserved worldwide
CONTRIBUTORS
Marilyn Kennedy
Assistant Editor Marilynangelmantodaycom
Sybille Kraft Bellamy
Parent Expert in Nutrition
And LGIT diet FacebookcomAngelmanSyndromeDiet
STAY CONNECTED ON THE GO
DOWNLOAD THE NEW ISSUU APP TODAY ON GOOGLE PLAY
AND NOW IN THE APP STORE
Dr Harry Angelman
1915 ndash 1996
Dr Harry Angelman was an English physician
who identified what is now known as Angelman
Syndrome
He first observed three children who were not
related but showed similar symptoms of severe
intellectual delay stiff jerky gait lack of speech
seizures motor disorders and happy demeanors
Although Dr Angelman was born in Birkenhead
England he was an enthusiast for the language
and country of Italy And it was while vacationing
in Italy he observed an oil painting called A Boy
with a Puppet by the renaissance artist Giovanni
Francesco Caroto at the Castelvecchio museum in
Verona Reminded of the children hersquod observed
Dr Angelman published a paper in 1965 that
described what he called ldquopuppet childrenrdquo At
this time his paper was not immediately
recognized as important
It wasnrsquot until 1982 when Charles A Williams
and Jaime L Frias of the department of Pediatrics
Division of Genetics University of Florida
College of Medicine Gainesville submitted a
paper to the American Journal of Medical
Genetics reporting studies of six patients and
comparing their data to those from previous
reports - severe developmental delay ldquopuppet-
likerdquo gait craniofacial abnormalities and frequent
episodes of laughter- that it became clear the
syndrome was more common than previously
thought They proposed the name of this disorder
be changed to Angelman Syndrome
The History of Angelman Syndrome
Angelman Today
Books Recommended by Parents
Connect with us on
Thanks for your support
Please Share Angelman Today
wwwangelmantodaycom
Dr Harry Angelman
1915 ndash 1996
El Dr Harry Angelman fue un meacutedico Ingleacutes quien
identificoacute lo que hoy en diacutea se llama Siacutendrome de
Angelman
Nacioacute en Birkenhead Inglaterra Le fascinaba el idioma
y la cultura de Italia
El fue el primero quien observoacute treacutes nintildeos no
relacionados quienes demostraban siacutentomas similares ndash
atrasos severos intelectuales un modo de andar que era
espasmoacutedico y riacutegido ausencia del hablar
convulsiones y una disposicioacuten contento
Luego duranted unas vacaciones en Italia descubrioacute
una pintura llamada ldquoUn Nintildeo con una Marionetardquo
creado por el artista del Renascimiento Giovanni
Francesco Caroto en el museo Castelvecchio en
Verona La pintura le hizo pensar en los nintildeos que eran
sus pacientes y le condujo a publicar un artiacuteculo
profesional en el antildeo 1965 que describiacutea lo que el
llamaba ldquoNintildeos Marionetasrdquo En aquel momento la
importancia de su artiacuteculo no fue reconocido como algo
importante
No pasoacute nada mas hasta Charles A Williams y Jaime L
Frias del departamento de Pediacuteatra Divisiacuteon de
Geneacutetica de la Universidad de Florida Colegio de
Medicina de Gainesville Florida sometieron un
artiacuteculo a la Revista Americana de Geneacutetica Meacutedica
explicando estudios de seacuteis pacientes comparando sus
datos con los de informes previos ndash incluyendo atrasos
intelectuales severos el andar como un ldquomarionetardquo
anormalidades cranio-faciales y espisodios frecuentes
de risas De repente se notoacute que eso era mucho maacutes
comuacuten de lo que anteriormente se creiacutea Ellos
propusieron ponerle el nombre de Siacutendrome de
Angelman en honor del Dr Harry Angelman
La Historia del Siacutendrome de Angelman (Spanish Translation)
Angelman Today
Gareth Edwards (Directeur de Star Wars) lrsquoaffirme la Force est avec lrsquoAngelman Syndrome Alliance (ASA)
On dit souvent que les parents feraient tout pour leurs enfants et crsquoest ce qui se veacuterifie agrave lrsquooccasion drsquoune maladie rare appeleacutee le syndrome drsquoAngelman Animeacutees drsquoun amour infini pour leurs enfants des organisations parentales de 15 pays ont formeacute une alliance dans le but de faire avancer la recherche qui permettra agrave ces enfants de parler courir et vivre leur vie pleinement Comme lrsquoaffirmait dans son intervention Gareth Edwards soutien de lrsquoassociation de bienfaisance anglaise qui accueillait cette anneacutee la confeacuterence internationale agrave Liverpool laquo Les Anges vont plus loin et au-delagrave raquo
De reacutecentes deacutecouvertes dues par le Professeur Art Beaudet (USA) avec le soutien des laboratoires pharmaceutiques ISIS vont conduire agrave des essais cliniques Drsquoautres chercheurs soutenus par des socieacuteteacutes pharmaceutiques ont obtenu des reacutesultats prometteurs pour ameacuteliorer la qualiteacute de vie des enfants et des adultes atteints du syndrome drsquoAngelman
Surmontant les obstacles dus aux langues aux diffeacuterences culturelles et leacutegales les organisations parentales ont creacuteeacute lrsquoAlliance du Syndrome drsquoAngelman (ASA) visant agrave faire progresser la recherche et agrave mettre en commun les ressources et les financements Dans les deux premiegraveres anneacutees 550 000 euro ont eacuteteacute reacuteunis et drsquoautres organisations venues du monde entier souhaitent srsquoy associer Cette anneacutee les organisations de parents se sont rencontreacutees agrave Liverpool dans le cadre du 50egraveme anniversaire de lrsquoidentification du syndrome Eacutetaient repreacutesenteacutes lrsquoAngleterre lrsquoIrlande la Belgique les Pays Bas lrsquoAllemagne lrsquoAutriche la France lrsquoItalie le Portugal le Japon Israeumll la Hongrie la Pologne la Finlande et la Suisse
Comme le disait le Professeur Ype Elgersma (NL) laquo Nous vivons des temps prometteurs car nous sommes en mesure drsquoinverser une grave maladie geacuteneacutetique raquo Crsquoest pourquoi il est de plus en plus neacutecessaire de renforcer notre action et de trouver drsquoautres financements Parce qursquoil est clair que chaque parent souhaite que son enfant vive heureux et en bonne santeacute
Tout ce que nous faisons nous le faisons pour nos Anges wwwangelmanallianceorg
Pour toute information sur lrsquoAlliance la recherche et drsquoautres questions vous pouvez contacter Betty Willemsen bettywillemsenninafoundationeu
Angelman Today
God only gives us what He is willing to walk us through
-Joell Gingrich Ketcham
ldquo ldquo
ldquo
Adding youtube video
platform to Angelman Today
Video content will include bull Interviews
bull Product Reviews
bull Latest Research
bull How To videos
bull Parent tips and interviews
bull Much more
Email Lizzieangelmantodaycom if you
would like to participate
Announcements
We are expanding Angelman Today to include a new
platform of video media
To do this we will be making some changes that will
include the publishing schedule for the online digital
magazine Starting in January 2016 we will start
publishing Angelman Today quarterly 4 information-
packed editions a year
Subscriptions of the online magazine will remain
FREE
Subscribing to the YouTube channel is also FREE
We welcome all Angelman foundations parents
care takers physicians and researchers to
contribute Deadlines are
bull December 10
bull March 10
bull June 10
bull September 10
Show your support for Angelman Today and subscribe
WWWANGELMANTODAYCOM November December 2015
Toby B Kroger in Kentucky Scotty at Wegmans in NY
There are many challenges that come along with being
a caretaker of an individual with special needs
including a task that for many may be simple a trip
that we all must do regularly which is shop for
groceries
The best inventions are usually created from a persons
desire to satisfy a need or to solve a problem they
encounter in their own life One set of parents did just
that Drew Ann and David Long have three children
Caroline is their middle child she was diagnosed with
Rett syndrome The challenge came when Drew Ann
went grocery shopping with her kids She had a
Making Shopping A Little
Easier This Holiday Season helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
toddler and Caroline in her wheelchair The problem
presented itself as in the form of a question ldquoHow
do you push a wheelchair and a shopping cartrdquo
Drew Ann had the answer She was able to vision the
cart and sat in her car and sketched it out on paper
She knew she was not the first to have this dilemma
nor would she be the last
Carolinersquos Carts can now be found at some select
retailers You can visit wwwcarolinescartcom to
find a location near you
Parents we need your help We at Angelman Today
are calling for action There are not enough stores
with Carolinersquos carts Parents it is up to us We are
the ones that need them so we have to be the ones to
request them at our local retailers Some stores like
Target Shoprite Publix Lucky and Wegmans are
starting to have them available If they are not
currently at a store near you just ask the manager
You will be helping not only your family but the
many other families that may not yet even know this
helpful cart exists
WWWANGELMANTODAYCOM November December 2015
Thank you A big thanks to all of the contributors that help bring you Angelman Today
Angelman Today Supporters
If I Need Help ndash wwwifineedhelporg
All of the Angelman and
Associated
Foundations
across the globe
Additional Contributors
Kat Adams
Maria Cano Moraleda
Erin Bates
Angelman Today is a lifestyle guide to achieving better health for individuals with Angelman Syndrome and their families It is written with your needs in mind but is not a substitute for consulting with your physician or other health care providers The publisher and authors are not responsible for any adverse effects or consequences resulting from the use of the suggestions products or procedures that appear on this website or online magazine All matters regarding your health should be supervised by a licensed health care physician Copyright 2014 Angelman Today LLC All rights reserved worldwide
CONTRIBUTORS
Marilyn Kennedy
Assistant Editor Marilynangelmantodaycom
Sybille Kraft Bellamy
Parent Expert in Nutrition
And LGIT diet FacebookcomAngelmanSyndromeDiet
STAY CONNECTED ON THE GO
DOWNLOAD THE NEW ISSUU APP TODAY ON GOOGLE PLAY
AND NOW IN THE APP STORE
Dr Harry Angelman
1915 ndash 1996
Dr Harry Angelman was an English physician
who identified what is now known as Angelman
Syndrome
He first observed three children who were not
related but showed similar symptoms of severe
intellectual delay stiff jerky gait lack of speech
seizures motor disorders and happy demeanors
Although Dr Angelman was born in Birkenhead
England he was an enthusiast for the language
and country of Italy And it was while vacationing
in Italy he observed an oil painting called A Boy
with a Puppet by the renaissance artist Giovanni
Francesco Caroto at the Castelvecchio museum in
Verona Reminded of the children hersquod observed
Dr Angelman published a paper in 1965 that
described what he called ldquopuppet childrenrdquo At
this time his paper was not immediately
recognized as important
It wasnrsquot until 1982 when Charles A Williams
and Jaime L Frias of the department of Pediatrics
Division of Genetics University of Florida
College of Medicine Gainesville submitted a
paper to the American Journal of Medical
Genetics reporting studies of six patients and
comparing their data to those from previous
reports - severe developmental delay ldquopuppet-
likerdquo gait craniofacial abnormalities and frequent
episodes of laughter- that it became clear the
syndrome was more common than previously
thought They proposed the name of this disorder
be changed to Angelman Syndrome
The History of Angelman Syndrome
Angelman Today
Books Recommended by Parents
Connect with us on
Thanks for your support
Please Share Angelman Today
wwwangelmantodaycom
Gareth Edwards (Directeur de Star Wars) lrsquoaffirme la Force est avec lrsquoAngelman Syndrome Alliance (ASA)
On dit souvent que les parents feraient tout pour leurs enfants et crsquoest ce qui se veacuterifie agrave lrsquooccasion drsquoune maladie rare appeleacutee le syndrome drsquoAngelman Animeacutees drsquoun amour infini pour leurs enfants des organisations parentales de 15 pays ont formeacute une alliance dans le but de faire avancer la recherche qui permettra agrave ces enfants de parler courir et vivre leur vie pleinement Comme lrsquoaffirmait dans son intervention Gareth Edwards soutien de lrsquoassociation de bienfaisance anglaise qui accueillait cette anneacutee la confeacuterence internationale agrave Liverpool laquo Les Anges vont plus loin et au-delagrave raquo
De reacutecentes deacutecouvertes dues par le Professeur Art Beaudet (USA) avec le soutien des laboratoires pharmaceutiques ISIS vont conduire agrave des essais cliniques Drsquoautres chercheurs soutenus par des socieacuteteacutes pharmaceutiques ont obtenu des reacutesultats prometteurs pour ameacuteliorer la qualiteacute de vie des enfants et des adultes atteints du syndrome drsquoAngelman
Surmontant les obstacles dus aux langues aux diffeacuterences culturelles et leacutegales les organisations parentales ont creacuteeacute lrsquoAlliance du Syndrome drsquoAngelman (ASA) visant agrave faire progresser la recherche et agrave mettre en commun les ressources et les financements Dans les deux premiegraveres anneacutees 550 000 euro ont eacuteteacute reacuteunis et drsquoautres organisations venues du monde entier souhaitent srsquoy associer Cette anneacutee les organisations de parents se sont rencontreacutees agrave Liverpool dans le cadre du 50egraveme anniversaire de lrsquoidentification du syndrome Eacutetaient repreacutesenteacutes lrsquoAngleterre lrsquoIrlande la Belgique les Pays Bas lrsquoAllemagne lrsquoAutriche la France lrsquoItalie le Portugal le Japon Israeumll la Hongrie la Pologne la Finlande et la Suisse
Comme le disait le Professeur Ype Elgersma (NL) laquo Nous vivons des temps prometteurs car nous sommes en mesure drsquoinverser une grave maladie geacuteneacutetique raquo Crsquoest pourquoi il est de plus en plus neacutecessaire de renforcer notre action et de trouver drsquoautres financements Parce qursquoil est clair que chaque parent souhaite que son enfant vive heureux et en bonne santeacute
Tout ce que nous faisons nous le faisons pour nos Anges wwwangelmanallianceorg
Pour toute information sur lrsquoAlliance la recherche et drsquoautres questions vous pouvez contacter Betty Willemsen bettywillemsenninafoundationeu
Angelman Today
God only gives us what He is willing to walk us through
-Joell Gingrich Ketcham
ldquo ldquo
ldquo
Adding youtube video
platform to Angelman Today
Video content will include bull Interviews
bull Product Reviews
bull Latest Research
bull How To videos
bull Parent tips and interviews
bull Much more
Email Lizzieangelmantodaycom if you
would like to participate
Announcements
We are expanding Angelman Today to include a new
platform of video media
To do this we will be making some changes that will
include the publishing schedule for the online digital
magazine Starting in January 2016 we will start
publishing Angelman Today quarterly 4 information-
packed editions a year
Subscriptions of the online magazine will remain
FREE
Subscribing to the YouTube channel is also FREE
We welcome all Angelman foundations parents
care takers physicians and researchers to
contribute Deadlines are
bull December 10
bull March 10
bull June 10
bull September 10
Show your support for Angelman Today and subscribe
WWWANGELMANTODAYCOM November December 2015
Toby B Kroger in Kentucky Scotty at Wegmans in NY
There are many challenges that come along with being
a caretaker of an individual with special needs
including a task that for many may be simple a trip
that we all must do regularly which is shop for
groceries
The best inventions are usually created from a persons
desire to satisfy a need or to solve a problem they
encounter in their own life One set of parents did just
that Drew Ann and David Long have three children
Caroline is their middle child she was diagnosed with
Rett syndrome The challenge came when Drew Ann
went grocery shopping with her kids She had a
Making Shopping A Little
Easier This Holiday Season helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
toddler and Caroline in her wheelchair The problem
presented itself as in the form of a question ldquoHow
do you push a wheelchair and a shopping cartrdquo
Drew Ann had the answer She was able to vision the
cart and sat in her car and sketched it out on paper
She knew she was not the first to have this dilemma
nor would she be the last
Carolinersquos Carts can now be found at some select
retailers You can visit wwwcarolinescartcom to
find a location near you
Parents we need your help We at Angelman Today
are calling for action There are not enough stores
with Carolinersquos carts Parents it is up to us We are
the ones that need them so we have to be the ones to
request them at our local retailers Some stores like
Target Shoprite Publix Lucky and Wegmans are
starting to have them available If they are not
currently at a store near you just ask the manager
You will be helping not only your family but the
many other families that may not yet even know this
helpful cart exists
WWWANGELMANTODAYCOM November December 2015
Thank you A big thanks to all of the contributors that help bring you Angelman Today
Angelman Today Supporters
If I Need Help ndash wwwifineedhelporg
All of the Angelman and
Associated
Foundations
across the globe
Additional Contributors
Kat Adams
Maria Cano Moraleda
Erin Bates
Angelman Today is a lifestyle guide to achieving better health for individuals with Angelman Syndrome and their families It is written with your needs in mind but is not a substitute for consulting with your physician or other health care providers The publisher and authors are not responsible for any adverse effects or consequences resulting from the use of the suggestions products or procedures that appear on this website or online magazine All matters regarding your health should be supervised by a licensed health care physician Copyright 2014 Angelman Today LLC All rights reserved worldwide
CONTRIBUTORS
Marilyn Kennedy
Assistant Editor Marilynangelmantodaycom
Sybille Kraft Bellamy
Parent Expert in Nutrition
And LGIT diet FacebookcomAngelmanSyndromeDiet
STAY CONNECTED ON THE GO
DOWNLOAD THE NEW ISSUU APP TODAY ON GOOGLE PLAY
AND NOW IN THE APP STORE
Dr Harry Angelman
1915 ndash 1996
Dr Harry Angelman was an English physician
who identified what is now known as Angelman
Syndrome
He first observed three children who were not
related but showed similar symptoms of severe
intellectual delay stiff jerky gait lack of speech
seizures motor disorders and happy demeanors
Although Dr Angelman was born in Birkenhead
England he was an enthusiast for the language
and country of Italy And it was while vacationing
in Italy he observed an oil painting called A Boy
with a Puppet by the renaissance artist Giovanni
Francesco Caroto at the Castelvecchio museum in
Verona Reminded of the children hersquod observed
Dr Angelman published a paper in 1965 that
described what he called ldquopuppet childrenrdquo At
this time his paper was not immediately
recognized as important
It wasnrsquot until 1982 when Charles A Williams
and Jaime L Frias of the department of Pediatrics
Division of Genetics University of Florida
College of Medicine Gainesville submitted a
paper to the American Journal of Medical
Genetics reporting studies of six patients and
comparing their data to those from previous
reports - severe developmental delay ldquopuppet-
likerdquo gait craniofacial abnormalities and frequent
episodes of laughter- that it became clear the
syndrome was more common than previously
thought They proposed the name of this disorder
be changed to Angelman Syndrome
The History of Angelman Syndrome
Angelman Today
Books Recommended by Parents
Connect with us on
Thanks for your support
Please Share Angelman Today
wwwangelmantodaycom
Angelman Today
God only gives us what He is willing to walk us through
-Joell Gingrich Ketcham
ldquo ldquo
ldquo
Adding youtube video
platform to Angelman Today
Video content will include bull Interviews
bull Product Reviews
bull Latest Research
bull How To videos
bull Parent tips and interviews
bull Much more
Email Lizzieangelmantodaycom if you
would like to participate
Announcements
We are expanding Angelman Today to include a new
platform of video media
To do this we will be making some changes that will
include the publishing schedule for the online digital
magazine Starting in January 2016 we will start
publishing Angelman Today quarterly 4 information-
packed editions a year
Subscriptions of the online magazine will remain
FREE
Subscribing to the YouTube channel is also FREE
We welcome all Angelman foundations parents
care takers physicians and researchers to
contribute Deadlines are
bull December 10
bull March 10
bull June 10
bull September 10
Show your support for Angelman Today and subscribe
WWWANGELMANTODAYCOM November December 2015
Toby B Kroger in Kentucky Scotty at Wegmans in NY
There are many challenges that come along with being
a caretaker of an individual with special needs
including a task that for many may be simple a trip
that we all must do regularly which is shop for
groceries
The best inventions are usually created from a persons
desire to satisfy a need or to solve a problem they
encounter in their own life One set of parents did just
that Drew Ann and David Long have three children
Caroline is their middle child she was diagnosed with
Rett syndrome The challenge came when Drew Ann
went grocery shopping with her kids She had a
Making Shopping A Little
Easier This Holiday Season helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
toddler and Caroline in her wheelchair The problem
presented itself as in the form of a question ldquoHow
do you push a wheelchair and a shopping cartrdquo
Drew Ann had the answer She was able to vision the
cart and sat in her car and sketched it out on paper
She knew she was not the first to have this dilemma
nor would she be the last
Carolinersquos Carts can now be found at some select
retailers You can visit wwwcarolinescartcom to
find a location near you
Parents we need your help We at Angelman Today
are calling for action There are not enough stores
with Carolinersquos carts Parents it is up to us We are
the ones that need them so we have to be the ones to
request them at our local retailers Some stores like
Target Shoprite Publix Lucky and Wegmans are
starting to have them available If they are not
currently at a store near you just ask the manager
You will be helping not only your family but the
many other families that may not yet even know this
helpful cart exists
WWWANGELMANTODAYCOM November December 2015
Thank you A big thanks to all of the contributors that help bring you Angelman Today
Angelman Today Supporters
If I Need Help ndash wwwifineedhelporg
All of the Angelman and
Associated
Foundations
across the globe
Additional Contributors
Kat Adams
Maria Cano Moraleda
Erin Bates
Angelman Today is a lifestyle guide to achieving better health for individuals with Angelman Syndrome and their families It is written with your needs in mind but is not a substitute for consulting with your physician or other health care providers The publisher and authors are not responsible for any adverse effects or consequences resulting from the use of the suggestions products or procedures that appear on this website or online magazine All matters regarding your health should be supervised by a licensed health care physician Copyright 2014 Angelman Today LLC All rights reserved worldwide
CONTRIBUTORS
Marilyn Kennedy
Assistant Editor Marilynangelmantodaycom
Sybille Kraft Bellamy
Parent Expert in Nutrition
And LGIT diet FacebookcomAngelmanSyndromeDiet
STAY CONNECTED ON THE GO
DOWNLOAD THE NEW ISSUU APP TODAY ON GOOGLE PLAY
AND NOW IN THE APP STORE
Dr Harry Angelman
1915 ndash 1996
Dr Harry Angelman was an English physician
who identified what is now known as Angelman
Syndrome
He first observed three children who were not
related but showed similar symptoms of severe
intellectual delay stiff jerky gait lack of speech
seizures motor disorders and happy demeanors
Although Dr Angelman was born in Birkenhead
England he was an enthusiast for the language
and country of Italy And it was while vacationing
in Italy he observed an oil painting called A Boy
with a Puppet by the renaissance artist Giovanni
Francesco Caroto at the Castelvecchio museum in
Verona Reminded of the children hersquod observed
Dr Angelman published a paper in 1965 that
described what he called ldquopuppet childrenrdquo At
this time his paper was not immediately
recognized as important
It wasnrsquot until 1982 when Charles A Williams
and Jaime L Frias of the department of Pediatrics
Division of Genetics University of Florida
College of Medicine Gainesville submitted a
paper to the American Journal of Medical
Genetics reporting studies of six patients and
comparing their data to those from previous
reports - severe developmental delay ldquopuppet-
likerdquo gait craniofacial abnormalities and frequent
episodes of laughter- that it became clear the
syndrome was more common than previously
thought They proposed the name of this disorder
be changed to Angelman Syndrome
The History of Angelman Syndrome
Angelman Today
Books Recommended by Parents
Connect with us on
Thanks for your support
Please Share Angelman Today
wwwangelmantodaycom
Adding youtube video
platform to Angelman Today
Video content will include bull Interviews
bull Product Reviews
bull Latest Research
bull How To videos
bull Parent tips and interviews
bull Much more
Email Lizzieangelmantodaycom if you
would like to participate
Announcements
We are expanding Angelman Today to include a new
platform of video media
To do this we will be making some changes that will
include the publishing schedule for the online digital
magazine Starting in January 2016 we will start
publishing Angelman Today quarterly 4 information-
packed editions a year
Subscriptions of the online magazine will remain
FREE
Subscribing to the YouTube channel is also FREE
We welcome all Angelman foundations parents
care takers physicians and researchers to
contribute Deadlines are
bull December 10
bull March 10
bull June 10
bull September 10
Show your support for Angelman Today and subscribe
WWWANGELMANTODAYCOM November December 2015
Toby B Kroger in Kentucky Scotty at Wegmans in NY
There are many challenges that come along with being
a caretaker of an individual with special needs
including a task that for many may be simple a trip
that we all must do regularly which is shop for
groceries
The best inventions are usually created from a persons
desire to satisfy a need or to solve a problem they
encounter in their own life One set of parents did just
that Drew Ann and David Long have three children
Caroline is their middle child she was diagnosed with
Rett syndrome The challenge came when Drew Ann
went grocery shopping with her kids She had a
Making Shopping A Little
Easier This Holiday Season helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
toddler and Caroline in her wheelchair The problem
presented itself as in the form of a question ldquoHow
do you push a wheelchair and a shopping cartrdquo
Drew Ann had the answer She was able to vision the
cart and sat in her car and sketched it out on paper
She knew she was not the first to have this dilemma
nor would she be the last
Carolinersquos Carts can now be found at some select
retailers You can visit wwwcarolinescartcom to
find a location near you
Parents we need your help We at Angelman Today
are calling for action There are not enough stores
with Carolinersquos carts Parents it is up to us We are
the ones that need them so we have to be the ones to
request them at our local retailers Some stores like
Target Shoprite Publix Lucky and Wegmans are
starting to have them available If they are not
currently at a store near you just ask the manager
You will be helping not only your family but the
many other families that may not yet even know this
helpful cart exists
WWWANGELMANTODAYCOM November December 2015
Thank you A big thanks to all of the contributors that help bring you Angelman Today
Angelman Today Supporters
If I Need Help ndash wwwifineedhelporg
All of the Angelman and
Associated
Foundations
across the globe
Additional Contributors
Kat Adams
Maria Cano Moraleda
Erin Bates
Angelman Today is a lifestyle guide to achieving better health for individuals with Angelman Syndrome and their families It is written with your needs in mind but is not a substitute for consulting with your physician or other health care providers The publisher and authors are not responsible for any adverse effects or consequences resulting from the use of the suggestions products or procedures that appear on this website or online magazine All matters regarding your health should be supervised by a licensed health care physician Copyright 2014 Angelman Today LLC All rights reserved worldwide
CONTRIBUTORS
Marilyn Kennedy
Assistant Editor Marilynangelmantodaycom
Sybille Kraft Bellamy
Parent Expert in Nutrition
And LGIT diet FacebookcomAngelmanSyndromeDiet
STAY CONNECTED ON THE GO
DOWNLOAD THE NEW ISSUU APP TODAY ON GOOGLE PLAY
AND NOW IN THE APP STORE
Dr Harry Angelman
1915 ndash 1996
Dr Harry Angelman was an English physician
who identified what is now known as Angelman
Syndrome
He first observed three children who were not
related but showed similar symptoms of severe
intellectual delay stiff jerky gait lack of speech
seizures motor disorders and happy demeanors
Although Dr Angelman was born in Birkenhead
England he was an enthusiast for the language
and country of Italy And it was while vacationing
in Italy he observed an oil painting called A Boy
with a Puppet by the renaissance artist Giovanni
Francesco Caroto at the Castelvecchio museum in
Verona Reminded of the children hersquod observed
Dr Angelman published a paper in 1965 that
described what he called ldquopuppet childrenrdquo At
this time his paper was not immediately
recognized as important
It wasnrsquot until 1982 when Charles A Williams
and Jaime L Frias of the department of Pediatrics
Division of Genetics University of Florida
College of Medicine Gainesville submitted a
paper to the American Journal of Medical
Genetics reporting studies of six patients and
comparing their data to those from previous
reports - severe developmental delay ldquopuppet-
likerdquo gait craniofacial abnormalities and frequent
episodes of laughter- that it became clear the
syndrome was more common than previously
thought They proposed the name of this disorder
be changed to Angelman Syndrome
The History of Angelman Syndrome
Angelman Today
Books Recommended by Parents
Connect with us on
Thanks for your support
Please Share Angelman Today
wwwangelmantodaycom
Toby B Kroger in Kentucky Scotty at Wegmans in NY
There are many challenges that come along with being
a caretaker of an individual with special needs
including a task that for many may be simple a trip
that we all must do regularly which is shop for
groceries
The best inventions are usually created from a persons
desire to satisfy a need or to solve a problem they
encounter in their own life One set of parents did just
that Drew Ann and David Long have three children
Caroline is their middle child she was diagnosed with
Rett syndrome The challenge came when Drew Ann
went grocery shopping with her kids She had a
Making Shopping A Little
Easier This Holiday Season helliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphelliphellip
toddler and Caroline in her wheelchair The problem
presented itself as in the form of a question ldquoHow
do you push a wheelchair and a shopping cartrdquo
Drew Ann had the answer She was able to vision the
cart and sat in her car and sketched it out on paper
She knew she was not the first to have this dilemma
nor would she be the last
Carolinersquos Carts can now be found at some select
retailers You can visit wwwcarolinescartcom to
find a location near you
Parents we need your help We at Angelman Today
are calling for action There are not enough stores
with Carolinersquos carts Parents it is up to us We are
the ones that need them so we have to be the ones to
request them at our local retailers Some stores like
Target Shoprite Publix Lucky and Wegmans are
starting to have them available If they are not
currently at a store near you just ask the manager
You will be helping not only your family but the
many other families that may not yet even know this
helpful cart exists
WWWANGELMANTODAYCOM November December 2015
Thank you A big thanks to all of the contributors that help bring you Angelman Today
Angelman Today Supporters
If I Need Help ndash wwwifineedhelporg
All of the Angelman and
Associated
Foundations
across the globe
Additional Contributors
Kat Adams
Maria Cano Moraleda
Erin Bates
Angelman Today is a lifestyle guide to achieving better health for individuals with Angelman Syndrome and their families It is written with your needs in mind but is not a substitute for consulting with your physician or other health care providers The publisher and authors are not responsible for any adverse effects or consequences resulting from the use of the suggestions products or procedures that appear on this website or online magazine All matters regarding your health should be supervised by a licensed health care physician Copyright 2014 Angelman Today LLC All rights reserved worldwide
CONTRIBUTORS
Marilyn Kennedy
Assistant Editor Marilynangelmantodaycom
Sybille Kraft Bellamy
Parent Expert in Nutrition
And LGIT diet FacebookcomAngelmanSyndromeDiet
STAY CONNECTED ON THE GO
DOWNLOAD THE NEW ISSUU APP TODAY ON GOOGLE PLAY
AND NOW IN THE APP STORE
Dr Harry Angelman
1915 ndash 1996
Dr Harry Angelman was an English physician
who identified what is now known as Angelman
Syndrome
He first observed three children who were not
related but showed similar symptoms of severe
intellectual delay stiff jerky gait lack of speech
seizures motor disorders and happy demeanors
Although Dr Angelman was born in Birkenhead
England he was an enthusiast for the language
and country of Italy And it was while vacationing
in Italy he observed an oil painting called A Boy
with a Puppet by the renaissance artist Giovanni
Francesco Caroto at the Castelvecchio museum in
Verona Reminded of the children hersquod observed
Dr Angelman published a paper in 1965 that
described what he called ldquopuppet childrenrdquo At
this time his paper was not immediately
recognized as important
It wasnrsquot until 1982 when Charles A Williams
and Jaime L Frias of the department of Pediatrics
Division of Genetics University of Florida
College of Medicine Gainesville submitted a
paper to the American Journal of Medical
Genetics reporting studies of six patients and
comparing their data to those from previous
reports - severe developmental delay ldquopuppet-
likerdquo gait craniofacial abnormalities and frequent
episodes of laughter- that it became clear the
syndrome was more common than previously
thought They proposed the name of this disorder
be changed to Angelman Syndrome
The History of Angelman Syndrome
Angelman Today
Books Recommended by Parents
Connect with us on
Thanks for your support
Please Share Angelman Today
wwwangelmantodaycom
Thank you A big thanks to all of the contributors that help bring you Angelman Today
Angelman Today Supporters
If I Need Help ndash wwwifineedhelporg
All of the Angelman and
Associated
Foundations
across the globe
Additional Contributors
Kat Adams
Maria Cano Moraleda
Erin Bates
Angelman Today is a lifestyle guide to achieving better health for individuals with Angelman Syndrome and their families It is written with your needs in mind but is not a substitute for consulting with your physician or other health care providers The publisher and authors are not responsible for any adverse effects or consequences resulting from the use of the suggestions products or procedures that appear on this website or online magazine All matters regarding your health should be supervised by a licensed health care physician Copyright 2014 Angelman Today LLC All rights reserved worldwide
CONTRIBUTORS
Marilyn Kennedy
Assistant Editor Marilynangelmantodaycom
Sybille Kraft Bellamy
Parent Expert in Nutrition
And LGIT diet FacebookcomAngelmanSyndromeDiet
STAY CONNECTED ON THE GO
DOWNLOAD THE NEW ISSUU APP TODAY ON GOOGLE PLAY
AND NOW IN THE APP STORE
Dr Harry Angelman
1915 ndash 1996
Dr Harry Angelman was an English physician
who identified what is now known as Angelman
Syndrome
He first observed three children who were not
related but showed similar symptoms of severe
intellectual delay stiff jerky gait lack of speech
seizures motor disorders and happy demeanors
Although Dr Angelman was born in Birkenhead
England he was an enthusiast for the language
and country of Italy And it was while vacationing
in Italy he observed an oil painting called A Boy
with a Puppet by the renaissance artist Giovanni
Francesco Caroto at the Castelvecchio museum in
Verona Reminded of the children hersquod observed
Dr Angelman published a paper in 1965 that
described what he called ldquopuppet childrenrdquo At
this time his paper was not immediately
recognized as important
It wasnrsquot until 1982 when Charles A Williams
and Jaime L Frias of the department of Pediatrics
Division of Genetics University of Florida
College of Medicine Gainesville submitted a
paper to the American Journal of Medical
Genetics reporting studies of six patients and
comparing their data to those from previous
reports - severe developmental delay ldquopuppet-
likerdquo gait craniofacial abnormalities and frequent
episodes of laughter- that it became clear the
syndrome was more common than previously
thought They proposed the name of this disorder
be changed to Angelman Syndrome
The History of Angelman Syndrome
Angelman Today
Books Recommended by Parents
Connect with us on
Thanks for your support
Please Share Angelman Today
wwwangelmantodaycom
STAY CONNECTED ON THE GO
DOWNLOAD THE NEW ISSUU APP TODAY ON GOOGLE PLAY
AND NOW IN THE APP STORE
Dr Harry Angelman
1915 ndash 1996
Dr Harry Angelman was an English physician
who identified what is now known as Angelman
Syndrome
He first observed three children who were not
related but showed similar symptoms of severe
intellectual delay stiff jerky gait lack of speech
seizures motor disorders and happy demeanors
Although Dr Angelman was born in Birkenhead
England he was an enthusiast for the language
and country of Italy And it was while vacationing
in Italy he observed an oil painting called A Boy
with a Puppet by the renaissance artist Giovanni
Francesco Caroto at the Castelvecchio museum in
Verona Reminded of the children hersquod observed
Dr Angelman published a paper in 1965 that
described what he called ldquopuppet childrenrdquo At
this time his paper was not immediately
recognized as important
It wasnrsquot until 1982 when Charles A Williams
and Jaime L Frias of the department of Pediatrics
Division of Genetics University of Florida
College of Medicine Gainesville submitted a
paper to the American Journal of Medical
Genetics reporting studies of six patients and
comparing their data to those from previous
reports - severe developmental delay ldquopuppet-
likerdquo gait craniofacial abnormalities and frequent
episodes of laughter- that it became clear the
syndrome was more common than previously
thought They proposed the name of this disorder
be changed to Angelman Syndrome
The History of Angelman Syndrome
Angelman Today
Books Recommended by Parents
Connect with us on
Thanks for your support
Please Share Angelman Today
wwwangelmantodaycom
Dr Harry Angelman
1915 ndash 1996
Dr Harry Angelman was an English physician
who identified what is now known as Angelman
Syndrome
He first observed three children who were not
related but showed similar symptoms of severe
intellectual delay stiff jerky gait lack of speech
seizures motor disorders and happy demeanors
Although Dr Angelman was born in Birkenhead
England he was an enthusiast for the language
and country of Italy And it was while vacationing
in Italy he observed an oil painting called A Boy
with a Puppet by the renaissance artist Giovanni
Francesco Caroto at the Castelvecchio museum in
Verona Reminded of the children hersquod observed
Dr Angelman published a paper in 1965 that
described what he called ldquopuppet childrenrdquo At
this time his paper was not immediately
recognized as important
It wasnrsquot until 1982 when Charles A Williams
and Jaime L Frias of the department of Pediatrics
Division of Genetics University of Florida
College of Medicine Gainesville submitted a
paper to the American Journal of Medical
Genetics reporting studies of six patients and
comparing their data to those from previous
reports - severe developmental delay ldquopuppet-
likerdquo gait craniofacial abnormalities and frequent
episodes of laughter- that it became clear the
syndrome was more common than previously
thought They proposed the name of this disorder
be changed to Angelman Syndrome
The History of Angelman Syndrome
Angelman Today
Books Recommended by Parents
Connect with us on
Thanks for your support
Please Share Angelman Today
wwwangelmantodaycom
Books Recommended by Parents
Connect with us on
Thanks for your support
Please Share Angelman Today
wwwangelmantodaycom
Connect with us on
Thanks for your support
Please Share Angelman Today
wwwangelmantodaycom
