Angelman Today July - August Edition 2013

PREMIER DIGITAL EDITION INCLUDING RESOURCES RESEARCH INSPIRATION

Be

Inspired

by Angels

in Action

1

Letter From The Editor

The Motivation

It all began with a thought a series of events like International Angelman Day and meeting other passionate parents After

receiving my sonrsquos diagnosis I immediately developed this strong desire to learn as much as I could about his genetic

condition Since there is currently no lsquotreatmentrsquo available I asked myself ldquowhat can I do to help my son todayrdquo

As I learned of the advancements in research and the wonderful work that the foundations do across the globe I was filled

with gratitude and hope But my time is limited as yours is I wondered how I could stay current with this information

Inspired by IAD I sat down to write a blog post on wwwMeetTheFamaliesofASblogspotcom and the words never came

Instead ideas of a simple resource that can give us information in the quickest way possible directly in the palm of our

hands An online magazine As I talked with Angel Moms they thought it was perfect and had the same idea It felt as

though our conversations on how we are helping our kids was leading up to this

My name is Lizzie Sordia and my son Nathan was diagnosed with Angelman Syndrome shortly after his second birthday

Our story starts out very similar to many of yours It was July to be exact Itrsquos funny how I find myself in this position just 3

years after his diagnosis But I guess this is what happens when you light the fire of a Mother Lion Donrsquot tell me what my

son canrsquot do he will show you what he can do In our journey with Nathan the hardest times were before we received his

diagnosis I knew immediately after birth something wasnrsquot right He was transported to the NICU (Neonatal Intensive Care

Unit) within 24 hours of being born After seizures started we practically lived in the hospital He was so sick and had

uncontrollable seizures that almost took him from us Doctors and specialist didnrsquot know what was wrong Fragile X tests

and others were inconclusive We faced our darkest time alone with the unknown I did not yet know of this wonderful and

helpful community that was waiting for me

Having a sick child and unanswered questions was the most helpless feeling for me and my family and I donrsquot want anyone

to feel the way we did no matter where they are on this planet It is my personal goal to reach them and provide them with

comfort or information which ever they are looking for

Nathan almost received a diagnosis of Autism thatrsquos what they were whispering around the hospital but no one wanted to

officially diagnose him He had many of the same symptoms Thanks to those whispers it lead me to find the brightest

people who knew how to help Nathan and make a difference in his life in a very short time I can now say Nathan is healthy

he walks has a few words says ldquoMamardquo everyday (melts my heart) a few signs sleeps through the night and is making

gains every day

Like most children with AS Nathan (del+) did not start off sleeping very well so since I was up I put that time to good use

I researched and reached out to AS families and learned from their experiences I am going to share my team of experts

with you as well as many others I have met along the way The best news is that there are things we can do for our kids

TODAY Many of you are doing them already

Now more than any other time in history has it been easier to unite people on a global level We are working on translating

this magazine in every language so we can all communicate freely and quickly I want to bring you the brightest minds in the

field of AS including researchers and practitioners who treat our children everyday Doctors that practice functional medicine

and Bio-Medical treatments All of these efforts will equal real suggestions that we can apply and see what will work for our

individual children TODAY Having options is important because there is a lot more going on with many of our kids then just

chromosome 15 and some doctors are missing it the way they missed the diagnosis or they blame AS for some symptomshellip

We will share with you experiences from families everywhere There is nothing more powerful than an experience

Anyone who would like to share their story CAN and you (the reader) can take what you would like from it and use it to help

you on your journey (or not)

This is our life our journey to learn and grow Itrsquos going to be wonderful terrible filled with love hugs and tears We are in it

together to help

Sincerely

Lizzie Sordia

Editor-in-Chief 2

July 2013 Premier Online Edition

Cover Credits

Kaylee Fingold

AS UBE3A

Photographed by

Wes Bonnefin Photography

wwwbonnefinstudioscom

Angels in

Action

Social

Security

Benefits

18 This article will give

you a basic overview of

the options that may be

available for your family

and will provide you with

the information needed to

begin the Social Security application process

6 Understanding Genetic

Classes of Angelman

Syndrome

Charles Williams MD is a

Professor of Pediatrics and

Genetics Division of

Genetics and Metabolism

Department of Pediatrics

University of Florida

WWWANGELMANTODAYCOM JULY AUGUST 2013 | Angelman Today

GF

27 Gluten Free

Living Not just a fad diet find

out its many benefits for

those with Angelman

Syndrome Find out some

of the symptoms that go

unnoticed

15 Angels in Action

Inspiring stories from

families celebrating the

abilities of our children

with Angelman Syndrome

endearing called

ldquoAngelsrdquo

In Every Issue

5 Contributors

AS Research

9 Latest research by Ed Weeber

10 LGIT study by Dr Thibert and Dr Elizabeth Thiele

Low Glycemic Index Treatment proves

Effective at reducing seizures

41 Minocycline update by FAST

Newly Diagnosed Families

6 Understanding Genetic Classes

7 lsquoWelcome to Hollandrsquo by Emily Perl Kingsley

8 Words of Wisdom

Quotes from parents

15 Angels in Action - Krista

23 Angels in Action ndash Shea

29 Angels in Action - Carter

Features

2 Letter from the Editor

Inspiration for creating Angelman Today

4 Our Journey

18 Social Security Benefits

32 RDI Therapy - Relationship Development

Intervention

Angelman Syndrome Foundations

12 Angelman Syndrome Foundation US

13 Angelman Networks New Zealand

21 Angelman Syndrome Ireland

25 Casa Angelman Argentina

41 Foundation for Angelman Syndrome Therapeutics

3

Together we are all on a journey A journey that is the same and different

There is no right way or wrong We span across the globe

There is so much we can learn from one another We can share our experiences

of laughter joy failure and triumph Together our global community

will become connected like never before And we will make great progress Improve the lives of our families

And maybehellip just maybehellip Take part in the ultimate solution

In finding the cure

~Lizzie Sordia Editor in Chief

Our Journey Begins Here

4

Contributors

Karen VanPuyenbroek Associate Editor

Isabel Orellana

Marc Bissonnette

Sybille Kraft

Bellamy

A Big Thank You to our contributors for helping to make this magazine a reality Your talent passion and love for our kids is what Angelman Today is all about -Lizzie Sordia Editor ndash in - Chief

Angelman Today

Edwin Weeber PhD Professor Dept of Molecular Pharmacology and Physiology Chief Scientific Officer USF Health Byrd Alzheimers Institute Director Neurobiology of Learning and Memory Laboratory University of South Florida Healths

Morsani College of Medicine

Charles A Williams MD Professor of Pediatrics and

Genetics Division of Genetics and Metabolism Department

of Pediatrics University of Florida

5

Conducting blood testing to diagnose

Angelman syndrome (AS) can be a

complicated matter Here I summarize the

different genetic causes of AS and provide

general guidelines about how to use genetic

tests to confirm the diagnosis of AS First let

us look at the genetic mechanisms that cause

AS

A chromosome 15 pair is illustrated for each class depicted but the other chromosomes are not shown The P

indicates the maternally-derived chromosome and the M indicates the maternally-derived one The shaded

chromosomes have a paternal pattern of gene functioning while the unshaded chromosomes have a maternal

pattern AS can be caused by either a large chromosome deletion (70 of the time) a disruptive mutations in the

UBE3A gene inherited from the mother (indicated by the X) inheritance from the father of 2 normal number 15

chromosomes (eg paternal uniparental disomy [UPD]) or an imprinting defect (ID) occurring when the

chromosome 15 inherited from the mother has the paternal pattern of gene functioning because of a problem in

the imprinting center (denoted by the small open circle)

In addition to these mechanisms a clinical diagnosis of AS may be given even though the genetic testing is

normal The percentages indicate how common each mechanism occurs

How do we use genetic testing and what is the sequence of testing There are many pathways to diagnosis for

families undergoing testing for AS but the most common testing pathway is summarized here

Understanding Genetic Classes of Angelman Syndrome

Dr Charles Williams


6

Welcome To Holland

Welcome To Holland

by

Emily Perl Kingsley

copy1987 by Emily Perl Kingsley All rights reserved Reprinted with permission of the author

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not

shared that unique experience to understand it to imagine how it would feel Its like this

When youre going to have a baby its like planning a fabulous vacation trip - to Italy You buy a bunch of guide

books and make your wonderful plans The Coliseum The Michelangelo David The gondolas in Venice You may

learn some handy phrases in Italian Its all very exciting

After months of eager anticipation the day finally arrives You pack your bags and off you go Several hours later

the plane lands The flight attendant comes in and says Welcome to Holland

Holland you say What do you mean Holland I signed up for Italy Im supposed to be in Italy All my life Ive

dreamed of going to Italy

But theres been a change in the flight plan Theyve landed in Holland and there you must stay

The important thing is that they havent taken you to a horrible disgusting filthy place full of pestilence famine and

disease Its just a different place

So you must go out and buy new guide books And you must learn a whole new language And you will meet a

whole new group of people you would never have met

Itrsquos just a different place Its slower-paced than Italy less flashy than Italy But after youve been there for a while

and you catch your breath you look around and you begin to notice that Holland has windmillsand Holland has

tulips Holland even has Rembrandts

But everyone you know is busy coming and going from Italy and theyre all bragging about what a wonderful time

they had there And for the rest of your life you will say Yes thats where I was supposed to go Thats what I had

planned

And the pain of that will never ever ever ever go away because the loss of that dream is a very very significant

loss

But if you spend your life mourning the fact that you didnt get to Italy you may never be free to enjoy the very

special the very lovely things about Holland


7

ldquoThe words of advice I offer newly diagnosed families today starts out a little different than it did a few years ago In the past I might have

suggested parents not jump into researching the syndrome and to ignore the majority of what has been written by experts Today

there is a multitude of valuable information available and it is written by the true experts the parents of the Angelman Syndrome

Community Do your research Read all you can Join the online support groups and ask questions Find local families and meet their

families You are going to see a wide variety of personalities abilities opinions and you are going to feel right at home

Here are a few tried and true words of advice that I still share because they have stood the test of time

1 Never underestimate your child and do not base your expectations on the evaluations of others

2 Your child is your child and unless you are neglecting or endangering your child that does not change because of a diagnosis There

are many people out there who think they know best but a parents instinct and the intimate knowledge they have of their child serves as

the best indicator of what is right and of what needs to be done

3 No matter what the numbers say your child is still one of a kind and always will be A diagnosis is a way of helping you help your child

but it does not define your child or your family Your child has a syndrome The syndrome does not have your child

4 Be a family first Try not to let a diagnosis consume you 247 therapy is not healthy for anyone Love and play are the best gifts you

can give your child and are the best stimulants for growth and development

5 Take care of yourself Take care of your spouse and take care of your other children It is easy to focus on your child with a diagnosis

and not realize you have let other things go We have all tried to be the strong one and prove we can do this but I assure you the earlier

you learn to allow others to help out the easier it will be

6 There will be good days and bad days Your emotions will betray you when you least expect it You will experience the highest and

lowest of emotions and sometimes on the same day You will sweat the small stuff and you will celebrate the small stuff You have

joined a community that will be here for all of this and we will understandrdquo

Brenda Dixon Mississippi

Jonathan - 33yrs AS Del+

ldquoNever accept a doctor telling you that your child lsquowont be able torsquo

Never under estimate you childs potential--our kids love to learn Always

have faith in your gut instinctsMomma (or Daddy) usually knows best

Look forward with faith in the advances and treatments that are on the

horizon but as you struggle (from time to time) in your daily life with an

Angel (and there will be struggles) know that you are not alone--we are

all in this together Dont be afraid to ask questions Support tears

cheers and hugs are just a phone call or Facebook post away Take time

each day to recognize the blessings in your life Enjoy your Angel hugsrdquo

Carol Pulver Florida

Shea Pulver - 22yrs AS Del+

ldquoDont allow anyone even yourself to see a diagnosis instead of a child A child needs a parent more than a therapist or researcher

Yes we need to wear several hats to be good parents - but from your childs point of view he really needs Mommy and Daddy more

than DrTherapistresearcheradvocate - he only has ONE parent or set of parents Sometimes we get so caught up in helping them

that we forget the main point which is to be there physically and emotionally for them From the start concentrate on communication and

functional skills These things cannot wait until theyre older Typical children start learning those things immediately and nobody says

oh wait I dont know how to communicate with you yet - I need to take a class or oh wait youll have to learn to potty train or pull your

pants up and down when youre 15 (and 6 feet tall) its more natural to just hand-over-hand those motions from a very early age and

present communication pictures (or even the objects themselves to choose from) as a matter of course as you go about your day (This

is Dora this is a book - which one would you like)

If it takes years to develop the actual skills its better to start at age 2 and have that skill when theyre 12 then to start at age 12 to teach

skillswhen theyve already got ingrained habits and learned helplessness from having everything done for them Believe my aching

back when I say teaching a child to crawl into his carseat early on will save a lot of wear and tear on your body Kids with special needs

get just as much joy and confidence from doing for themselves as anyone You never know until you try Read Disability is Natural by

Kathie Snow This is common sense advice for parents of special needs kids that they really need to hearrdquo

Lulu Carpenter California

Simon - 23 yrs AS

Words Of

Wisdom


8

Interested in what research has been published about AS Dr Ed Weeber will tell us how we can search for information and some of the

latest research happening around the globe

How can you get published scientific articles concerning Angelman syndrome research By accessing the free data base

called PubMed (wwwpubmedgov) This valuable resource is developed and maintained by the National Center for

Biotechnology Information (NCBI) at the National Library of Medicine (NLM) and contains more than 20 million references

to scientific articles The search function allows single or multiple terms to narrow the number of ldquohitsrdquo In addition you can

search for authors in order to find all of the publications from a specific researcher Many of these publications are free

and all of them have an abstract to describe the research

A search for the term ldquoAngelman syndromerdquo will reveal 1300 publications with the earliest dating back to 1950 To make

the science a little easier to digest every issue will present a selection of the latest published scientific articles with

Angelman syndrome in the title abstract or key words section of the paper Below are some recent papers that have come

out in the last few months

Title Recurrent fractures as a new skeletal problem in the course of Angelman syndrome

Journal Bone

Authors Rusińska A Dzwonek AB Chlebna-Sokoacuteł D

Department of Pediatric Propedeutics and Metabolic Bone Diseases Medical University of Lodz Poland Maria

Konopnicka Memorial Teaching Hospital No 4 Medical University of Lodz Poland

Abstract

Angelman syndrome is a genetically inherited syndrome with severe retardation of psychomotor development and speech

disturbances usually accompanied by epilepsy typical dysmorphic features and some skeletal symptoms The aim of the

current report is to present new skeletal symptoms which may occur in the course of AS based on a case report of an 8-

year-old girl with confirmed 15q1112 microdeletion and recurrent low-trauma bone fractures According to our knowledge it

is the first report of such skeletal symptoms in patient with a diagnosis of AS

Title Role of the ubiquitin ligase E6APUBE3A in controlling levels of the synaptic protein Arc

Journal Proc Natl Acad Sci U S A

Authors Kuumlhnle S Mothes B Matentzoglu K Scheffner M

Department of Biology and Konstanz Research School Chemical Biology University of Konstanz 78457 Konstanz

Germany

Abstract

Inactivation of the ubiquitin ligase E6 associated protein (E6AP) encoded by the UBE3A gene has been associated with

development of the Angelman syndrome Recently it was reported that in mice loss of E6AP expression results in

increased levels of the synaptic protein Arc and a concomitant impaired synaptic function providing an explanation for

some phenotypic features of Angelman syndrome patients Accordingly E6AP has been shown to negatively regulate

activity-regulated cytoskeleton-associated protein (Arc) and it has been suggested that E6AP targets Arc for ubiquitination

and degradation In our study we provide evidence that Arc is not a direct substrate for E6AP and binds only weakly to

E6AP if at all Furthermore we show that down-regulation of E6AP expression stimulates estradiol-induced transcription

of the Arc gene Thus we propose that Arc protein levels are controlled by E6AP at the transcriptional rather than at the

posttranslational level

Title Proteomic profiling in Drosophila reveals potential Dube3a regulation of the actin cytoskeleton and neuronal

homeostasis

Journal PLoS One

Authors Jensen L Farook MF Reiter LT

Department of Neurology University of Tennessee Health Science Center Memphis Tennessee United States of

America 9

Abstract

The molecular defects associated with Angelman syndrome (AS) and 15q duplication autism are directly correlated to

expression levels of the E3 ubiquitin ligase protein UBE3A Here we used Drosophila melanogaster to screen for the targets

of this ubiquitin ligase under conditions of both decreased (as in AS) or increased (as in dup(15)) levels of the fly Dube3a or

human UBE3A proteins Using liquid phase isoelectric focusing of proteins from whole fly head extracts we identified a total of

50 proteins that show changes in protein and in some cases transcriptional levels when Dube3a fluctuates We analyzed

head extracts from cytoplasmic nuclear and membrane fractions for Dube3a regulated proteins Our results indicate that

Dube3a is involved in the regulation of cellular functions related to ATP synthesismetabolism actin cytoskeletal integrity

both catabolism and carbohydrate metabolism as well as nervous system development and function Sixty-two percent of the

proteins were gt50 identical to homologous human proteins and 8 have previously be shown to be ubiquitinated in the fly

nervous system Eight proteins may be regulated by Dube3a at the transcript level through the transcriptional co-activation

function of Dube3a We investigated one autism-associated protein ATPα and found that it can be ubiquitinated in a Dube3a

dependent manner We also found that Dube3a mutants have significantly less filamentous actin than wild type larvae

consistent with the identification of actin targets regulated by Dube3a The identification of UBE3A targets is the first step in

unraveling the molecular etiology of AS and duplication 15q autism

Title Discrimination training reduces high rate social approach behaviors in Angelman syndrome proof of principle

Journal Res Dev Disabil

Authors Heald M Allen D Villa D Oliver C

Cerebra Centre for Neurodevelopmental Disorders School of Psychology University of Birmingham Edgbaston B15 2TT

UK mxo988bhamacuk

Abstract

This proof of principle study was designed to evaluate whether excessively high rates of social approach behaviors in children

with Angelman syndrome (AS) can be modified using a multiple schedule design Four children with AS were exposed to a

multiple schedule arrangement in which social reinforcement and extinction cued using a novel stimulus were alternated

Twenty-five to 35 discrimination training sessions were conducted and levels of approach behaviors were measured before

and after the discrimination training for two children All four participants evidenced discrimination between conditions of

reinforcement and extinction after 16-20 teaching sessions as indicated by lower rates of social approach behaviors in the

presence of the S(Δ) for extinction Reversal effects for the two children for whom this design was implemented were evident

The results demonstrate that after repeated training the use of a novel stimulus can serve as a cue for children with AS to

discriminate adult availability This is a potentially effective component of a broader intervention strategy but highlights the

need for sustained teaching procedures within this population

Title The Angelman syndrome protein Ube3aE6AP is required for Golgi acidification and surface protein sialylation

Journal J Neurosci

Authors Condon KH Ho J Robinson CG Hanus C Ehlers MD

Department of Neurobiology Duke University Medical Center Durham North Carolina 27710 USA

Abstract

Angelman syndrome (AS) is a severe disorder of postnatal brain development caused by neuron-specific loss of the HECT

(homologous to E6AP carboxy terminus) domain E3 ubiquitin ligase Ube3aE6AP The cellular role of Ube3a remains

enigmatic despite recent descriptions of synaptic and behavioral deficits in AS mouse models Although neuron-specific

imprinting is thought to limit the disease to the brain Ube3a is expressed ubiquitously suggesting a broader role in cellular

function In the current study we demonstrate a profound structural disruption and cisternal swelling of the Golgi apparatus

(GA) in the cortex of AS (UBE3A(m-p+)) mice In Ube3a knockdown cell lines and UBE3A(m-p+) cortical neurons the GA is

severely under-acidified leading to osmotic swelling Both in vitro and in vivo the loss of Ube3a and corresponding elevated

pH of the GA is associated with a marked reduction in protein sialylation a process highly dependent on intralumenal Golgi

pH Altered ion homeostasis of the GA may provide a common cellular pathophysiology underlying the diverse plasticity and

neurodevelopmental deficits associated with AS

10

A Grandmother finds a solution for her granddaughter and all of our kids with Angelman Syndrome

By Lois Carroll

When my growing granddaughter who has AS couldnt be fitted with large enough bibs I took out my sewing machine to

solve the problem I showed the resulting smock to friends and my project Sophies Smocks named after my granddaughter

was born so that many kids with AS could have a free smock

I buy new and gently used turtlenecks and trim Supporters donate their time to help and their money for postage and

materials to keep the project ongoing All the smocks are FREE for individuals with AS I have child size SMALL to adult XL

They are available to others for a donation to cover at least the postage to keep the project going

To get a smock all you have to do is ask by emailing smockscoxnet Give me your childs shirt size plus a name and

mailing address including zip Ill send one as soon as I can Theres no catch and no obligation I mail around the world and

free means free You can check it out at my website httploiscarrollbookscomindexSShtm

Thank you

Grandma Lois

Sophies Smocks


Clinical Trial of Low Glycemic Index Treatment proves effective for reducing seizures by 80 ndash 90

Dr Thibert and Dr Elizabeth Thiele (both are members of the Scientific Advisory board for the Angelman Syndrome

Foundation) were able to launch a clinical study to determine the efficacy of the Low Glycemic Index Treatment in

reducing seizures in individuals with Angelman Syndrome In July 2012 the results were in and published in

Epilepsia and in the Angelman Syndrome Foundation newsletter

Epilepsia link httponlinelibrarywileycomdoi101111j1528-1167201203537xabstract

PubMed link httpwwwncbinlmnihgovpubmed22779920

You can read my interview with Dr Thibert on my blog wwwMeetTheFamiliesofASblogspotcom

11

NEW DEVELOPMENTS AT THE ANGELMAN SYNDROME FOUNDATION

Angelman Syndrome Foundation Invests $125 Million in AS ResearchDue to your support the Angelman Syndrome Foundation is able to award more than $125 million in grants for AS research this current grant cycle This yearrsquos funded research will contribute to all future AS preclinical and clinical trials helping move AS research closer to developing treatments for individuals with AS while furthering the research communityrsquos understanding of the complexities of AS Thanks to you this yearrsquos funded research will seek to define the optimal window for potential treatment further understanding of varying UBE3A gene mutations and deletions and determine if a current FDA-approved drug is a viable treatment in an AS mouse model

ASF Biennial Conference Your Ultimate AS ResourceThe Angelman Syndrome Foundationrsquos 2013 Biennial Conference Championing Progress will be held July 23-26 at the Walt Disney World Swan amp Dolphin resort in Orlando Florida As a central resource for your familyrsquos unique needs and those of your loved one with AS the Conference addresses all aspects of living with AS and provides the opportunity to network and learn from a variety of experts and keynote speakers attend breakout sessions and participate in collaborative opportunities with other families

iPads For ASTo help individuals with AS overcome some of the challenges associated with communication the Angelman Syndrome Foundation has launched the iPads For AS program which provides Applereg iPadsreg for up to 100 individuals who qualify for the program Requirements for

participation include working with a speech pathologist and conducting quarterly assessments among others

ASF Honors Your InvestmentDue to your support and that of more than 7000 volunteers during the last 21 years the Angelman Syndrome Foundation has been able to

bull Providemorethan250000individuals with information support and connections to resources

bull Raisemorethan$125million to fund research and provide direct support to individuals affected by AS

bull Grantmorethan$58millionto more than 70 research endeavors to support a diverse set of research projects

bull Holdmorethan186individualwalks in 42 cities across the country that have been attended by more than 52000 individuals

The Angelman Syndrome Foundation is honored to serve as a resource to the AS community and welcomes any individual touched by AS to contact the organization

wwwAngelmanorg (800) 432-6435 Intrsquol (630) 978-4245 infoangelmanorg

Thank you for your supportThe 2013 Angelman Syndrome Foundation National Walk boasted record participation with more than 11700 individuals who to date have raised more than $1 million towards the $11 million fundraising goal Fundraising continues through September 30 The Angelman Syndrome Foundation is deeply grateful for the time energy and support that you and the AS community invested to raise these funds that provide direct support to individuals with AS and their families through programs resources and networking opportunities and that fund research that will help lead to a cure for AS

The Power of Cooking

Angelman syndrome ketogenic diets and LGIT

By Sybille Kraft Bellamy

One of the best ways to naturally help our angels is by giving them a

nutritious healthy diet

Our angels are fragile and very sensitive to their environment

Little things minor changes can trigger dramatic consequences

Each child is unique each parent is special

We have to rediscover the power of food

Therapeutic diets like ketogenic diets have been used for years to help

control epilepsy Today the LGIT (Low Glycemic Index Treatment) is

one of the easiest diets to give to our angels It is one of the weapons

we can use to protect them from the multiple risks they face Seizures

are a major and common risk for our angels

The LGIT helps balance and reinforce the energy they need to keep

them happy healthy and at full cognitive capability

The modification of your childrsquos diet can be done one step at a time

Small changes can lead to big improvements

This is a unique opportunity for you MOM and DAD to directly affect

your childrsquos health and quality of life

There is nothing more terrible than to feel helpless when your child is

sick Our Angelrsquos challenges are numerous and it is proven that a

special diet can help avoid many of their complications

The medical community is embracing this form of treatment to remedy

many disorders worldwide The Angelman community is hard at work to

bring awareness of this treatment to our families Resources such as

ldquoAngleman Syndrome Dietrdquo on Facebook and The Charlie Foundation

can provide information and support to help you start taking control of

your childrsquos diet health and wellbeing

LGIT Testimonial - Jay and Joel are my 26 year old identical twin sons who both have Angelman Syndrome

Seizures have always been a huge problem for them at one point they were both having over 250 grandmals a day

and spent almost a year in the hospital trying to get them controlled Doctors at that time only gave them a 1

chance to survive Now at age 26 Joelrsquos seizures are well controlled with meds but Jayrsquos have never been controlled

In March we started the LGIT after talking to his Dr and getting a lot of support and advice from Sybille Since

starting the diet we have seen a huge decrease in the amount and severity of Jayrsquos seizures Before the diet he

would have 10-20 seizures a week and need a rescue med 3x a week and now he may have only 4-5 seizures a

month Prior to starting the LGIT Jayrsquos seizures were very intense grandmals where he would stop breathing and turn

blue each time and he would have several in a row we have not seen him turn blue or stop breathing since the diet I

believe the diet is helping him tremendously and he is much more alert and vocal Their neurologist has begun

weaning Joel off of one of his seizure meds because of the side effects and we have now started Joel on the LGIT

diet also and he too is acting more alert and vocal (and no seizures) - Lisa Truax-Murphy

Recipes can be found on

Facebookcomangelmansyndromediet

13

LGIT Testimonial - Anna had a terrible start She could not drink and because of this she was hospitalized 3 weeks

after her birth They soon discovered she had epilepsy and here in The Netherlands I understood almost all babies with

epilepsy get Phenobarbital Because I was not satisfied with the care Anna received we decided to move to another

hospital So almost 6 months later the new neurologist advised us to stop with Phenobarbital and start with Keppra

And it was a good choice When Anna was 1 year old she finally got diagnosed Angelman Syndrome With Keppra

we succeeded to keep her seizure free for almost 2 years When the seizures came back we started with Rivotril

(Clonazepam) in addition to the Keppra and it helped her for 2 years but then the seizures came back again Her

neurologist advised us to start with a third drug but we didnrsquot want to give her more medicine At the same time I read

the research article about the LGIT and I got enthusiastic about it I had to give it a try Annarsquos neurologist was a bit

suspicious but I insisted so he helped us The first month was terrible Anna got more seizures and was very tired I was

so afraid I was only complicating her life instead of helping her I was so down that I just wanted to stop the diet But

after a long phone call with Sybille Kraft I decided to continue the diet for just a few more weeks And Irsquom so happy we

did this A week later Annarsquos absences were gone She started to walk again became more alert And the best thing

of all was that for the first time in her life she slept for 6 hours without waking This was so amazing

The LGIT made a big change in Annarsquos life She is able to concentrate shersquos more active and sleeps better Its just

amazing At first the diet appears very complicated This is because we are so used to eating a lot of bread sugar and

processed food If you just use fresh vegetables meat eggs and fish you can easily cook something very healthy tasty

and LGIT When travelling we always take our own food with us for Anna and there is always something on the menu in

a restaurant that she can eat

-Violeta Giurgi

Summer Time is a great time to find your local farmerrsquos market and buy fresh fruits amp veggies

14

Angels in Action

Angels in Action is where you will read about the inspiring stories of the success in gained skills and abilities by our loved ones with

Angelman Syndrome Written by the families we join in celebrating the abilities no matter how big or small We believe it is

important to inspire everyone with these real stories of our endearingly termed lsquoAngels in Actionrsquo

Possibilities abound when we have a vision By Karen VanPuyenbroeck of Illinois

Angel Mom to Krista 10 years old AS UPD

When I was asked by our Editor In Chief Lizzie Sordia to write a piece about Kristas abilities for this section I asked myself what

were my burning questions about how to develop abilities in my daughter and for me I just really wanted to figure out how I could

teach her to speak I knew that there had to be a way and I obsessed on this topic for hours days months and yes even years It

took me quite a while to find an angel with functional speech but I found him and once I found him I knew that it was possible for my

angel to speak too I wanted to know how it was possible And the big lesson that I learned from Richies mom Dawn was that they

first believed that he could develop this ability and so did his therapists From that point on I developed my own belief and eliminated

therapists who did not support my vision for my daughter of verbal communication and unfortunately for me this meant that Krista

received no speech therapy for a time and mom became her therapist with the help of a program called NACD Through NACD I

learned that an unskilled parent who was willing to learn how to implement therapy who would spend many hours per week

implementing therapy and who could maintain the vision for their child was preferable to a highly skilled professional therapist who

could only spend an hour per week with my child and who did not share my vision

Today at age 10 Krista speaks over a hundred words and has quite a few phrases her speech has been referred to as functional

by her school and by the last two speech therapists who have evaluated her Kristas favorite and most consistent phrase over the

years has been I love you and if those were the only words that I had ever heard spoken from the lips of my angel all of the energy

that we have put into her healing program would have been worth it and I would do hundreds of times over again

Heres how we did it

1 We cultivated belief I have to credit my husband Steve for this This angel Daddy always knew that his girl was A-ok And to my

kids Nana who said simply if you want her to speak we will teach her to speak Because Nana has adult twin boys with autism as

a result of Urea Cycle Disorder I knew that she knew exactly what she was talking about and so I believed her Kristas older

siblings played an essential role by always speaking to her as if she could speak back

2 I tossed out any lsquoDebbie Downerrsquo therapists or health care providers in her life at times this meant that she did not receive

certain therapies at all but again I had come to understand that it was better that I work with her with all of my love support and

belief than it was for a professional who didnt see things that way

3 I only shared my vision for my daughter with people who believed in her ability well meaning friends and relatives may want to

help you accept your childs limitations I finally came to understand that this was their position and realized that pushing the issue

was only baiting them into an oh you poor dear its sad that you have not come to terms with your childs disability type of lecture

4 Gluten and Casein free diet baby Thanks to a miraculous accident I bought the wrong Autism book at Barnes and Noble called

Unraveling The Mystery of Autism by author Karyn Seroussi This started us on an amazing journey that lead us to the wonderful

discovery that by removing these offending proteins my daughters health would improve drastically and as a result of her improved

health status Krista gained many wonderful skills much too many to mention here but improved speech was definitely a biggie


15

5 At 5 orsquoclock sharp every morning Krista liked to crawl out of my bed and venture off to her play room

where shed play with blocks and just adored taking things apart During this play time I would get down

on the floor with her grab a block put it near my mouth and just repeatedly say Mama The toy was

used to bring her attention to my mouth a technique that I learned while researching the Son-Rise

program This developed into me singing Mama over and over again and pretty soon my girl was

saying Mama so Id check in with her daily to make sure that she still had Mama down pat and I then

moved on to Dada and Baba etc Some words came very easily and some did not but I remained

grateful for every word or approximation that this angel girl could produce never giving a second

thought to the ones that were really tough for her Always referring to her speech as developing

6 Through Glenn Domans book What to do About Your Brain Injured Child (Brain injury in this context

referring to any condition affecting your childs cognitive ability) I learned that I should listen out for

different sounds that she would make for example many babies will babble mmm You catch the child

saying mmm and you sit him down and say I have noticed that you can say mmm Now we will take

that mmm sound and it will mean Mama In this scenario every time you hear the child babble

mmm you will quickly reinforce this by saying something like You said Mama I love it when you say

Mama You called me and I came My Krista is very high intensity and responds very well to intense

animated and even loud praise so this method has proven very effective for us

7 Good probiotics to clear up yeast in the gut and to help to heal Kristas gut was essential

8 Krista gained even more speech while participating in the Angelman Syndrome Supplement Trial

9 We used MB12 shots with much success in Krista learning to string together longer sentences

10 Lastly in recent months Lizzie talked me into supplementing with a fish oil that is specifically

formulated to aid in speech development We saw great results I learned quite a bit about therapeutic

dosing of fish oil at Integrative Nutrition where Dr Sears of The Zone Diet was a guest lecturer and huge

advocate for this approach From this I learned that Krista needed about three times the amount of fish

oil than what is recommended for general health in order to be able to see an increase in ability for

speech

My determination for Krista to learn to speak started when she was a mere baby she is now 10 and Im

still learning and remaining open to safe and effective ways of helping her in the area of speech as well

as many other areas of her life that will help her to become an independent young lady

If you are reading this and feeling a bit bummed out that you were not as convinced about the speech

thing as I was or you feel like oh had I only been that determined maybe I would be hearing my sweet

Angels voice Let me say this DO NOT feel that way There was something that seemed out of

reach for your Angel that you were able to help him or her accomplish that I may have not been able to

help my daughter to accomplish We only have so much energy to expend in a day I chose to expend it

on speech Another parent might be more consumed by helping their child to gain the ability to walk

independently maybe you always envisioned your angel riding a bike or reading whatever it is I hope

our story encourages you to cultivate a belief and unwavering faith that will lead to the achievement of

yours and more importantly your Angels dreams

Written by

Karen VanPuyenbroeck

Angelman Today Magazine

Associate Editor

KarenAngelmantodayGmailcom

Karen is a certified Health Coach providing Nutrition Counseling services to the special needs

community with a focus on Angelman syndrome To learn more about her services visit her website at wwwAngelFoodsbyKarencom


16

17

Social Security Disability Benefits and Angelman Syndrome Angelman Syndrome (AS) is a complex genetic disorder characterized by developmental delays and neurological

problems Children with AS often require around-the-clock care for their entire lives

Parents of children who have AS often dedicate extra time energy and even money to provide a high quality of life for

their child Assistive technology supportive care and specialty medical treatments rack up expenses quickly Parents

may even find it necessary to take time away from work to be with their child The resulting loss of income and lack of

medical insurances can be financially devastating

If your child has been diagnosed with Angelman Syndrome he or she may qualify for financial assistance in the form of

Social Security Disability (SSD) benefits SSD payments can be used to cover your childrsquos expensesmdashincluding anything

from food to supportive services to medical bills

The following article will give you a basic overview of the options available to your family and will provide you with the

information needed to begin the SSD application process

Compassionate Allowances and Angelman Syndrome

Typically the SSD application process can take months or even years to complete Fortunately the SSA recognizes that

individuals with severely disabling conditions may not be able to wait that long to receive disability benefits For this

reason the SSA offers Compassionate Allowances (CAL) processing to individuals with certain disabilities Applicants

who have been diagnosed with conditions covered by the CAL program can receive SSD benefits in as little as 10 days

Angelman Syndrome is one of approximately 200 conditions that qualify for CAL processing You will not need to fill out

additional paperwork or request to receive CAL processing The SSA will evaluate your childrsquos claim and expedite it

accordingly

Social Security Disability Insurance and Supplemental Security Income

The SSA offers disability benefits through two separate programsmdashSSDI and SSI Each of these programs has very

specific technical eligibility requirements

SSDI stands for Social Security Disability Insurance and provides benefits to disabled workers Eligibility for SSDI is

dependent on an applicantrsquos employment history as well as the amount of taxes he or she has paid into the system

Children and young adults donrsquot often qualify for SSDI on their own record because they havenrsquot had the chance to work

and pay into the program

It is important to note that if the childrsquos parent is qualified for SSDI or retirement benefits the child may qualify for

dependent benefits based on a parent or guardianrsquos earnings record If your child is technically an adult but was

diagnosed with Angelman Syndrome before age 22 he or she is considered to be an adult child Adult children may also

qualify for a childrsquos dependent benefits

SSI stands for Supplemental Security Income SSI is a needs-based program that provides financial assistance to elderly

or disabled individuals who earn very little income Eligibility for SSI is based on financial need not employment history

To qualify applicants cannot exceed specific financial limitations set in place by the SSA

In the case of a child a portion of his or her parentrsquos income will be ldquodeemedrdquo This means that the SSA will evaluate the

deemed income to determine whether or not the child meets the SSI financial eligibility requirements Deeming occurs

for children who are under the age of 18 unmarried and still live with a parent or guardian Parentsrsquo earned income

unearned income and financial resources will all be taken into consideration


18

Income and resources that will not be deemed includes the following

Welfare payments

Public Income Maintenance (PIM) including Temporary Assistance to Needy Families (TANF) and VA pension for

veterans

Food stamps

Disaster assistance

Foster care payments

Tax refunds on real property (property that includes land andor buildings)

Home grown produce used for personal consumption

The SSA also makes the following allowances for living expensesmdashmeaning that the following will be deducted from the

amount of income deemed to your child

$365 a month for each additional child that you support

$710 a month for a single parent or $1066 for two parents

It is important to note that this amount will not be subtracted for parents or children who already receive public assistance

Once your child turns 18 SSI payments will be based on his or her own earnings record

Medical Requirements

In addition to the previously mentioned technical requirements your child must also meet very specific medical

requirements to qualify for disability benefits The requirements can be found in a publication known as the ldquoblue bookrdquo

The SSArsquos blue book contains listings for potentially disabling conditions as well as the specific medical criteria an

applicant must meet to qualify under each condition

The SSA has separate listings for adults and children The specific medical requirement that your child will have to meet is

dependent on his or her age Your child will have to meet one or more of the following blue book listings to qualify for

disability benefits

Section 1205mdashMental Retardation (Adult)

Section 11205 ndash Mental retardation (Child)

Section 11008 B ndash Catastrophic Congenital Disorder (Child)

You can access these specific listings on the SSArsquos website

Preparing for the Social Security Disability Application Process

Even though your child qualifies for the Compassionate Allowances program you will still have to provide thorough medical

evidence that proves the extent of your childrsquos condition Medical evidence should include records of your childrsquos diagnosis

treatments response to treatments hospitalization records and medical test results You should also collect statements

from professional adults that interact with your child on a daily basis This can include doctors teachers and therapists

These statements should provide details about your childrsquos limitations and abilities

The SSA may also ask for evidence of the following

Your childrsquos inability to perform age appropriate functions

IQ test results showing a marked developmental deficit based on age

Other developmental delays and impairments in physical and mental functioning again based on age

You should collect these documents prior to beginning the application process to prevent any delays in the processing of

your childrsquos claim


19

Starting Your Application

The SSD application procedures will differ depending on whether you are filing for SSI benefits or SSDI dependent

benefits

If you are interested in learning more about dependent benefits you should call the SSArsquos main phone line (1-800-

772-1213) or contact the representative who handles the eligible parentrsquos claim

To apply for SSI benefits on behalf of a child you will be asked to complete two forms the ldquoApplication for

Supplemental Security Incomerdquo and the ldquoChild Disability Reportrdquo Currently only the child disability report can be

completed online You will have to schedule an appointment with your local Social Security office to complete the

application for SSI

If you are applying for SSI on behalf of an adult you will have to complete the same process with an ldquoAdult

Disability Reportrdquo rather than a child disability report

It is important that you realize how overwhelming and complicated the SSD application process may become In

fact many initial applications are denied and require the applicant to request an appeal hearing If your childrsquos

application is denied do not give up The key to receiving disability benefits it to be persistent in your efforts

For more information about applying for disability benefits visit Social Security Disability Help (wwwdisability-

benefits-helporg) or contact Molly Clarke at macssd-helporg


20

READ MORE ABOUT OUR ACTIVITIES AND BROWSE THE

INFORMATION PAGES HERE

httpangelmannetworkwordpresscom

Our successful International Angelman Day celebrations

held across the country

httpangelmannetworkwordpresscomlearn-

aboutwhat-is-the-angelman-network

For up to date info on Therapies

httpangelmannetworkwordpresscomtherapy-for-as

For information and ideas regarding Communication

httpangelmannetworkwordpresscomeducation-and-

communication

For general information on Epilepsy in AS

httpangelmannetworkwordpresscomangelman-

syndromeangelman-syndrome-epilepsy

The Angelman Network was

established in New Zealand as a

Charitable Trust in 2011 (CC46746)

We seek to connect and support

people impacted by Angelman

Syndrome

++++++++++++++

We are New Zealandrsquos only organisation

solely dedicated to promoting

awareness for Angelman Syndrome

and to actively promote and support

the progress being made with world-

wide research on AS

++++++++++++++

Our Information Pages are

regularly updated to include

newimproved ideas and links as

these become available

+++++++++++++++

Our aim is to offer an active and

accurate website which will become

a helpful resource for families and

provide useful and reliable information

for medical and educational

professionals both in

NZ and around the world

WE ARE ON FACEBOOK AT

Non-profit page

httpswwwfacebookcomtheangelmann

etwork

Informal group

httpswwwfacebookcomgroups10468

6089609200

Our ACTION ANGEL TEAM is an informal fundraising group who regularly raise funds and awareness for Angelman Syndrome by running in local races wearing their signature white wings

22

Shea teaches himself to read By Carol Pulver of Florida

Angel Mom to Shea 22 years old AS Del +

Shea (pronounced Shay) our youngest weighed a whopping 6 frac12 lbs at birth The largest of our 4 sons his delivery

followed an unremarkable pregnancy and he was born close to my due date Shearsquos Apgar scores (the tests done

shortly after birth) were all normalhigh He had all his fingers and toes and everything was wonderful

Problems began in the next couple of days when Shea had difficulty nursing He continued to have problems feeding

and was back in the hospital at 6 weeks with ldquofailure to thriverdquo (the catch all phrase) While in the hospital a visit from a

speech therapist alerted us to the low muscle tone in Shearsquos cheeks and his tongue thrust causing the inability for him

to sustain a suck for more than a few seconds

At home as we worked to make sure Shea received the nourishment he needed we began to notice some sensory

issues Moderately loud noises were very upsetting to him he seemed to startle easily and he wasnrsquot meeting the

milestones we were expecting in his development The pediatrician told me I was worrying needlessly that Shea was

just a little behind in his development Seeking a second opinion from another pediatrician I was told to immediately

schedule a neurology consultation get an EEG and do blood work to check for abnormalities

Up until this point though my motherrsquos intuition was telling me something was not right I still trusted our family

pediatrician to know more than I did I was wrong I learned to listen to that intuition to act on it Through the visit with

the neurologist and the blood work we received some answers

I remember the day we got our diagnosis of Angelman Syndrome (Shea is deletion +) Shea was about 2 years old

The neurologist gave us copies of articles from an early lsquo80s medical textbook describing Angelman Syndrome He

told us that our son would never be able to walk to talk or to function as our other children and that we might as well

ldquofind a place for himrdquo The doctor painted a very bleak picture of the future After leaving the office my husband and I

sat together in our car (as we cried) wondering what to tell our families feeling quite hopeless

We knew Shearsquos ldquoplacerdquo would be with us as long as we can take care of him We decided that we would do

everything in our power provide every opportunity for Shea to be all he can be Our journey has not been trial free but

the joy Shea brings to us and most everyone that gets to know him makes the challenges a little easier to bear

I want to share some of the things wersquove learned along this journey

1 Always trust your intuition No one knows your Angel(s) as well as you do

2 Never put a limit on your Angelrsquos abilities

Angels in Action


23

Shea taught himself to read

We were shocked when he consistently pointed to the correct flashcard when his teacher asked him to identify a

word on the card We think he learned to read by watching his Disney Sing-a-long songs videos (over and over

again) with the little bouncing ball over each word as it is sung He still enjoys watching them

3 You are your childrsquos greatest advocate It can be tiring sometimes it feels like wersquore always fighting for our

kids Remember that no one else cares as much as you do

4 Our kids are smart They want to learn and they want to show what theyrsquove learned Give them

choices Sometimes they process a bit slower so it takes them a little longer to follow through after a request is

made Make sure teachers and therapists are aware of this and are patient

5 Diet makes a difference Good nutrition along with supplements can help with sleep problems and may

alleviate the severity of seizures

6 There are moms and dads around the globe that are dealing with or have found the answer to many of the

problemsconcerns you are facing Connect with them If you can attend a conference or get-together (and

Walk-a-thon) where you have the opportunity to be meet other Angel families We help our Angels as we help

one another

When Shea was about 8 or 9 years old we had the opportunity to visit with the neurologist that gave us the

diagnosis (and pronounced the dismal life ahead for Shea) The Doctor wanted to use Shea as an example of a

neurological disorder to a group of doctors and nurses He was quite surprised (and said as much) to see a

young boy walk into the room and sit fairly quietly in the chair he was directed to and who seemed to understand

the directions he was given by his mom

We also explained that though Shea might have some developmental delays the doctor using the ldquoRrdquo word in

his discussion was not appropriate and was offensive We hope that doctor learned to never put a limit on an

Angelrsquos abilities


24


25

Reflexology

By Mariano Schiffini

At Casa Angelman Foundation we implement daily or weekly therapy in our Educational Therapy Center where Angels can enjoy the

benefits of this millennia old technique Hyperactivity ADD and the sleep disturbances that are so common in children with Angelman

are being treated with reflexology yielding excellent results Reflexology is a natural technique that is based on the principle that the

entire body including organs and glands are reflected on specific points on the feet Reflexology works by activating those centers

through massage and by applying pressure to specific points thus creating harmony in the centers that are out of balance and activating

the self healing energy of the body

Over the last year and a half I have worked with over 40 children with AS During this time I have observed characteristics that have

repeated themselves in the majority of cases Lack of contact with the heel of the foot to the ground creates an imbalance that all

children with AS whom I have worked with have At the beginning of each session I evaluate the feet and identify areas of imbalance so

that I can work on them based on the principles of water air land and fire Each area of the foot has a ldquotrigger pointrdquo that corresponds

to the body system for example the toe area (air) corresponds to our head sensory areas mental state expression and

communication By applying pressure here we create harmony in this system thereby correcting the imbalance and activating the self

healing energy that promotes a state of homeostasis

During the initial session I work with the child to get him or her to be comfortable laying down on the table Some children handle this

more easily than others With very active children itrsquos best not to cause distress We increase the duration of horizontal therapy slowly

until finally achieving 45 minutes of relaxation The key point is the connection with the therapist that will grow over time taking into

consideration the appropriate duration for each child As we begin the session I introduce a playful activity that includes items that are

light and of soft texture it can be a ball made of fabric that makes a slight noise or rattle to help reduce the anxiety that the new activity

causes This way the game functions like a vehicle that permits sessions to be expanded over time until finally managing to discard it

completely At first my work centers around relaxing the child so I can begin with the treatment technique The treatment consists of

working on different parts of the system including circulation digestive lymphatic respiratory and endocrine by massaging the

corresponding reflexology areas The ambience of the therapy must be well guarded It is important to generate a calm and serene

atmosphere that promotes relaxation while avoiding elements of distraction or interference Instrumental music and some relaxing

essential oil such as sandalwood or rose helps to generate pleasant sensations and wellbeing In my work with children who have AS

I have noted improvements in the areas of increased attention improved gait stability eye contact and many children will actually fall

asleep during the session After the first few sessions children with AS often express a desire to return for further sessions and will

participate happily

In such an atmosphere of serenity and acceptance devoid of judgment bit by bit the individual strengths of these children arise and

take their roots

Reflexologist of Casa Angelman For more information email mariano_schiffiniyahoocomar

Editorrsquos Note It is important to note that reflexology has been studied and proven effective for its ability to improve sleep in those who

suffer from insomnia as demonstrated by a Chinese study httpwwwreflexologyresearchnetReflexologySleepResearchshtml

Angel Mom Rocio Balbuena of Argentina had this to say about her experience at Casa Angelman

ldquoHi I am mother to Agustina Gonzalez a 4 year old girl with Angelman Syndrome I feel that the reflexology treatment that

my daughter received at Casa Angelman was a great success Agus fell asleep after the first 10 minutes of the therapy once

the session was complete the therapist informed me ldquoShe is asleep dont worry she will sleep well for 1-2 hoursrdquo and so it

was she was very relaxed I strongly recommend reflexology for all children with Angelman Syndromerdquo 26

Gluten Free Living

By Isabel Orellana

Over the years gluten has become a much debated substance But what is the fuss all about It is estimated that 5-10

percent of the US population is sensitive to gluten This would mean that 5-10 of our angels are sensitive However

the number is probably much higher When our angel first got diagnosed at 11 months we had never given him gluten

because our pediatrician had advised us not to start with wheat before age 1 After the diagnosis and investigating

about neurological differences and food related issues it became clear to us that our angel would continue his gluten

free journey for good It is important to note that the gluten free diet (GF) is not just a fad diet that will pass sooner or

later For neurologically different kids it can make a huge difference and be an important contributing factor in

maximizing your childrsquos health and facilitating development But you might say that people have been eating wheat for

thousands of years right Yes However people a few hundred years ago did not have to deal with many other factors

such as a weakened gut due to medications and processed foods

What is gluten

Gluten is a protein found in various grains such as wheat barley and rye While gluten is not present in oats people

sensitive to gluten can react to oats due to cross contamination This occurs when oats are packaged at a wheat

processing facility

Where do I find gluten

Typical gluten containing foods are bread pasta pizza cereal cakes cookies and many processed foods with

ingredients such as soy sauce etc

How can gluten affect special needs kids

Of course it can affect any person but it appears that people with neurological differences seem to be more sensitive to

gluten due to its inflammatory nature For children with autism for example removing gluten and other problematic

substances such as sugar dyes and artificial flavors as well as pasteurized dairy have noted great results in symptom

management

What are symptoms of gluten sensitivity

Detecting gluten sensitivity is often difficult since the symptoms may vary from person to person and in severity Not

everyone who is sensitive has celiac disease the most severe form of gluten intolerance The most common symptoms

are gastrointestinal issues (bloating reflux diarrhea or constipation) eczema and irritability

What options are there

Amaranth buckwheat corn millet oats quinoa and rice (preferably whole grain or wild rice) are all gluten free options

However for our angels who are on a low glycemic index diet I recommend watching gluten free alternatives carefully

since processed alternatives such as store bought bread cookies pasta and pizza are often made with high glycemic

index alternatives such as potato tapioca and white rice and this could prove counter productive in other areas such as

inflammation control

Conclusion

Gluten free living is a healthy approach for the entire family given that todays wheat is highly altered from its original

state and therefore holds minimal nutritional value Wheat is one of the 8 core allergy foods and as a simple

carbohydrate can increase inflammation and related infection risk in the body If you are looking for support on your

gluten free journey join the GFCF angels group and the Angelman Syndrome Diet page on Facebook Start your

journey today You have nothing to lose

GF


27

About the Author Isabel Orellana de Chang is a busy mum of two who since her sonrsquos diagnosis of Angelman

Syndrome has become passionate about learning all she can about healthy living She applies nutritional therapies

and keeps a toxin free home to maximize her sonrsquos health and developmental potentials She enjoys converting

recipes to her familyrsquos needs for maximum nutrition and healing She loves doing research and sharing what has

worked best for them as a family in order to help other special needs families She juggles her time between her

family her business Guatebabycom and the magazine Angelman Today Isabel hosts the Facebook Group

Angelman Syndrome amp Alternative Health Approach supporting interested families in improving their Angelsrsquo health

and development Her book Healthy Living for Special Needs will be coming out this summer

Helpful links

httponlinewsjcomarticleSB10001424052748704893604576200393522456636html

httpwwwnaturalnewscomgluten_intolerancehtml

httpwwwmindbodygreencom0-748210-signs-youre-gluten-intoleranthtml

httpwwwhuffingtonpostcomdr-mark-hymangluten-what-you-dont-know_b_379089html

httpwwwceliaccom

httpwwwceliaccentralorgnon-celiac-gluten-sensitivity

Some helpful tips to remember when meal planning

-Always keep it simple

-Fruits Veggies and Meats are naturally Gluten Free

Angelman Today July edition wwwangelmantodaycom 28

Carter learns to regulate his behavioral response by eliminating allergens and receiving RDI therapy

By Nealie Prewitt of Missouri

Once Carter was diagnosed with Angelman syndrome It didnt take long for us to learn what life with an Angel

meant Sleep deprivation behaviors therapies colds that always got worse and social obstacles were some of the

biggest challenges for us and Carter There wasnt a day that went by that I did not think there has to be something

some therapy some approach anything that I could do to make his life- our lives not so enduring Sleep seemed to be

the worst I noticed that Carter always seemed congested and it would keep or wake him up at night so I started with an

ENT The ENT noticed Carter had huge tonsils and extremely huge adenoids The ENT was confident that Carter

was suffering from sleep apnea At two years of age Carter had surgery to remove his tonsils and adenoids Sleep

drastically improved but Carter still seemed to have cycles of very little sleep

We then decided to take Carter in for allergy testing and imagine my surprise when Carterrsquos test results came back

positive for allergies to wheat gluten dairy beef pork cherry and tree nuts So that sealed the deal we were going

gluten and dairy free and everyone had to support the changes because Carter was allergic to it It was amazing to see

the differences in Carter after these foods that he was allergic to were removed from his diet In a matter of days Carter

was less aggressive more focused reasonable negotiate-able his eczema went away and his digestive system

improved Removing these allergens from Carters body allowed us to see just how miserable he felt and what

he was doing to cope with constant digestive discomfort burning itching skin and headaches

Over his three short years the very things Carter used to cope quickly became habits and behaviors - the head

banging pinching hitting throwing and yelling instantly improved but did not go away and Carter had also learned to

use these behaviors when he was frustrated unsure or when he just didnt want to do something Carter yearned for

peers but struggled to interact without becoming aggressive Even though Carters diet had now become natural to us

and made a huge impact on our daily lives something still seemed to be missing Life was still very overwhelming for all

of us at times If Carter eats dairy or gluten or a combination of the two or any other allergen Carter is visibly a mess

He will react to any impulse and sensation without thought or concern for anyone including himself Still there is that

missing piece that leaves Carter aimlessly floundering thru each day

Knowing that Carter deserved and needed more we began to investigate our options In a meeting with our advocate

we learned of a school that provided RDI therapy Carter has now been attending Dynamic Pathways for 12 months and

I can not tell you how much the RDI approach has changed our lives- especially Carters life This approach seems to

be that missing piece that Carter needed

Angels in Action


29

RDI stands for Relationship Development Intervention Brad and I are still learning about Relationship Development

Intervention and how to consistently implement it in our familyrsquos life but I do know what RDI looks like I see RDI everyday

when I look at Carter and see my Angel happy growing maturing successful and building social relationships without

aggression or major frustration I see Carter having his own thought processes that are appropriate for the situation he is

in he is not trained in social graces but has been given the ability to think for himself about how to make socially

acceptable choices

A small example of what RDI looks like on a daily ongoing basis would be how Carter is learning to understand and cope

with emotions 12 months ago if a random person was crying or angry Carter would hit himself that person or whomever

was in reach Now if a random person is crying or angry he seeks a trusted person and uses gestures to ask what is

wrong or is everything ok If the person is a friend or family member Carter will go to them and rub their back and

with gestures ask what is wrong If the emotion is too much for him to understand or deal with he will give the sign for

finished and want to leave the area For Carter gaining understanding of emotions and what to do about it took a lot of

time work and support and is still a work in progress as he is making the connections that something happened to cause

the emotion In the beginning Carter would react instantly with negative responses to emotions he could not or did not

understand so Brad or I would stay physically close to Carter guiding him with either physical contact or cues through body

language

If Carter was banging his head we might put a pillow a soft surface or our hand between Carters head and what he is

banging his head on and then give him a visual cue by shaking our head no As time (a lot of time) went on Carter would

bang his head less and look to us for a cue when someone was crying or upset When we noticed he was rarely hitting his

head and consistently looking to us when someone was upset we began modeling appropriate behavior we would step

back and watch the person that is crying When Carter started to follow our cues without head banging and could choose

to step back and look at the person that is crying on his own or with little to no cues from us we started modeling a new

behavior I would ask (sometimes remembering to use Carters gestures with our words) Brad if he knew why the person

was upset

When Carter consistently started to come to us or Baylor when someone was upset we very slowly and cautiously started

modeling the next step and we would ask the person what was wrong or if they were ok Currently asking the person if

they are ok can be too much for Carter especially if he starts to ask the person and the person cries more or pulls away

from him he may swat at them as if to hit them so we supported him where he was and added the option to fleerdquo Flee

means he can sign or gesture finish and leave the area the upset person is in This has taken Carter (and us as parents) a

lot of time but he has gained a lot of other thinking processes too during this time

Carter still has his moments but they are few and far between and he quickly regains his self-control or regulation I love

this approach because as a guide- everyone is taught and allowed to support Carter Sometimes Carter needs strategies

to cope or think as a support and other times he needs a hug or a reassuring pat on the back as support but no matter

what Carters behavior is the guides models teacher whatever you want to call them are supportive and are modeling the

flexible thinking it takes to learn the relationships and connections that are a part of the world This approach comes

without candy or food rewards and motivation there is no place for shameful looks or humiliating comments a behavior

can be overlooked when there is growth in another area but heartless ignoring has no place in this approach

With the RDI approach everyone is supporting Carter based upon his needs during every stage of learning I am so

relieved that our lives will never go back to that overwhelming feeling of despair because Carter is making connections and

rebuilding relationships that are allowing him to gain flexibility in his thinking and the only way he was able to start doing

this was through Dynamic Pathways and the RDI approach


30

The inaugural International Angelman Day was observed by over 30 organisations and hundreds of individuals worldwide Its resounding

success provides a solid platform to plan and organise for next year and indeed 2015 which will be the 50th anniversary of Dr Harry

Angelman identifying Angelman Syndrome and also Dr Harryrsquos 100th birthday

We are humbled that an idea from our small and recently founded organisation in Ireland was embraced by the global community and are

delighted that International Angelman Day provided the inspiration for this e-zine ldquoAngelman Todayrdquo We wish the editor and team every

success with this exciting endeavour

Please email asinternationaldaygmailcom with ideas you may have to observe International Angelman Day in 2014 amp beyond

INAUGURAL INTERNATIONAL ANGELMAN DAY A GLOBAL SUCCESS

When the board of Angelman Syndrome Ireland first discussed the possibility of establishing an International Day devoted to Angelman

Syndrome little did we anticipate the groundswell of support there would be from the four corners of the globe

The first step was to seek out and contact all the organisations supporting those with AS around the world and collectively agree on a date

which we would all observe and celebrate as International Angelman Day The date voted on was February 15th 2013 ndash February as it is

already recognised worldwide as Rare Disease Month and the 15th as a symbolic reference to Chromosome 15

ANGELMAN SYNDROME IRELAND

The organisation was formed in November 2011 to

Provide a support amp information network offering fact based knowledge about living with Angelman Syndrome for families caregivers and service providers throughout Ireland

Finance and encourage research efforts in line with current international work to advance understanding and deliver a treatment for Angelman Syndrome for people in Ireland

Our voluntary board and advisory team are recognised in their respective fields of neuro-development paediatrics clinical trials medical technology business strategy and finance amp charity governance BOARD OF DIRECTORS

Dr Kevin DunnemdashConsultant Paediatrician University College Hospital Galway

Mairsil ClaffeymdashVP Clinical Regulatory and Quality with Neuravi Ltd

Robert MoynihanmdashFinance amp Governance

Ashling KearnsmdashMarketing Strategy

Sarah Roartymdash Parent

Sara HetheringtonmdashParent

Vincent GribbinmdashParent

The purpose of this day is to

1 Raise awareness worldwide of Angelman Syndrome

2 Mobilise people to action amp encourage fundraising for the

individual organisation in their country

3 Promote research and educational resources in the

organisationrsquos own country

4 Remember those people with Angelman Syndrome who are no

longer with us

Next steps that have been discussed are

1 Formalise an international working group to plan and coordinate annual activities

2 Each countryrsquos organisation write to their local or national government to ask them to officially recognise International Angelman Day as an annual event on February 15th

3 Develop a website as a permanent home and central repository for all activities

You can find out about our organisation on wwwangelmanie

methodologies are influenced by the Relationship Development Intervention (RDI) Program amp the Dynamic

Intelligence Curriculum created by Dr Steven Gutstein as well as the mind development programs pioneered by

Dr Daniel Siegel from the MindSight Institute

When children and families participate in our program they acquire the skills and abilities to make mindful

thoughtful decisions They learn to emotionally regulate themselves to be a part of family routines and social

settings Children learn how to learn both academically and socially Children become apprentices to their

parents so they can see the world through their eyes and learn the appropriate morals and values of their family In

addition parents acquire valuable tools on how to work through obstacles and difficult behaviors in everyday

situations Parents are offered ongoing support from Dynamic Pathways staff to understand daily successes their

child is experiencing as well as the necessary knowledge to discuss and troubleshoot obstacles when they arise

Children who experience success with our program are observed to be happier and more thoughtful children who

make appropriate decisions when challenged academically and socially As a result they exhibit less aggressive

andor inappropriate behaviors both at home and in social settings

Our program is located in OrsquoFallon MO just outside St Louis We work with families globally Those unable to meet

in person receive services via an online system

wwwdynamicpathwaysllccom 1662 Bryan Road OrsquoFallon MO 63368 Phone 636-980-1286

Dynamic Pathways a Family Resource and Child

Education Center believes all children regardless

of their special need or diagnosis have the ability to

become mindful engaged learners someone who

is capable of making decisions solving problems

and communicating with others Our program

Most of us are either visual or auditory learners But

when these two senses are not enough you may need to

physically show an individual where the tongue lips and

jaw should go for speech and feeding skills

The Z-Vibe is an ideal tool to help you do so as it

provides targeted tactile cues within the oral cavity It

can also be turned on to vibrate The smooth gentle

vibration wakes up the mouth and can help increase

oral awareness decrease mouth stuffing reduce

drooling decrease oral defensiveness and texture

aversions and more Vibration can also be very calming

soothing and organizing especially for sensory seekers

who crave oral input There are over 35 different tip

attachments available from spoons to brushes to animals

and more which offer a vast range of sensory input

For more information on the Z-Vibe please visit our blog

and website at wwwARKTherapeuticcom


32

Happy 4th

of July

From your friends at

33

(baby 1 Isiah) to model appropriate baby behavior whenever she can Mom says that baby Isiahrsquos reaction to this is

to stare at baby Sarah for a moment laugh at her and crawl away

Does it get any cuter than that And if that were not enough to handle Jessica is also a single Angel Mom

If ever I had spoken to a mother who has every reason NOT to exercise and eat well this is the mother Yet every

single morning Jessica situates her 5 children in front of the television with their favorite movie and proceeds to

workout at home for an hour Jessica says that because this is a routine that Mommy does every day the kids

understand that this is momrsquos workout hour and that it is expected that they sit patiently and watch their movie until

Mommy completes her workout Jessica says ldquobecause I do this consistently and I am determined to get my

workout done my kids have become very accepting of the workout hour and my 7 year old Angel likes to join in and

imitate my exercise moves I feel good about the example that I am setting for my kids with health and fitness My

mother raised me this way and I am raising them this way and its something that I can feel good aboutrdquo

Q Do you feel that keeping up with your health and fitness routine helps you to be the kind of mom you want to be

A Well my daughter runs away from me a lot and before I became so faithful to my workout routine she was able to

outrun me and thatrsquos not safe Now I can keep up with her Plus I have so much more energy when I exercise and

eat healthy There is no way I could keep up without the extra energy that I derive from my routine Friends and

relatives are always asking me how I do it Theyrsquore my kids Irsquom used to the chaos and I can handle it I feel my kids

deserve a mother who is able to play and run around with them plus I feel strong and alert Yeah this definitely helps

me to be the Mom I want to be

Q What is your kidsrsquo diet like

A Well since Irsquove always believed that eating healthy was important my kids are given plenty of fruits and

vegetables and very little sugar I did have to deal with quite a bit of criticism from some friends and family who felt

like they were kids and I should just let them lsquoeat like kidsrsquo but I knew that they were my kids and I was committed to

raising them with healthy food as a priority Once my children were diagnosed with Angelman syndrome I knew it

was even more important to keep their diet healthy It hasnrsquot been easy to endure the criticism for my decision but I

feel really good about sticking with a good eating plan I donrsquot want to worry about childhood obesity or diabetes and

high blood pressure that I hear are happening with our children today Plus my kids are big over eaters and other

people in our lives donrsquot always understand that they must be made to stop eating Once my angels got into an entire

cake at a relatives house ate the whole thing They did not feel well after that and just laid around for the rest of the

day If I donrsquot monitor what they eat and how much they will become sick and Irsquom concerned that they could face

future disability as a result of the excess weight

Healthy and Fit with 5 kids 3 Angels No Time For Health and Fitness Because You Have an Angel

Let me introduce you to a very special Texan Mom with five children Jessica Included in

her five kid count is Jessicarsquos 10 year old son Yeshua (typical) who likes to help his

mom with the babies and who loves spending time with all of his siblings Next in line is 8

year old Jeremiah (Angel) who is a more solitary boy who knows what he likes and what

he doesnrsquot like and he will always let you know Then there is Jerusha age 7 (Angel)

very social and lively girl who keeps mom on her toes That brings us to the babies baby

1 is 23 month old Isiah Isiah has not yet been officially diagnosed with AS but he

laughs at everything and is slow to develop at the same rate as his older angel siblings

so mom is certain that she has been blessed with a third angel here Then there is baby

2 the animated on the go little Sarah (typical) who tries to get her partner in crime


34

Q How is the health of your children

A Well they are all pretty healthy I really canrsquot complain My daughter had some symptoms of seizure activity starting

about 3 years ago but I didnrsquot recognize this trembling as being related to seizures It became apparent a year ago

when she had her first drop seizure at home and I rushed her to the ER it was there that I was first told she was having

seizures The neurologist prescribed just one seizure medication and it has been working very well for her Today she

is healthy and seizure free I feel really lucky that my two other angels have never had seizures

Q What was one of your proudest moments as an angel mom

A Well I had been working for a long time to teach my kids sign language I couldnrsquot tell whether they were even paying

a bit of attention to me They didnrsquot seem to be catching on and were never using the signs that I was teaching them

But one day I took my daughter to the grocery store and she completely blew me away and brought me to tears when

she signed cookie cracker and milk with absolutely NO prompting from me It was an amazing day for me and I often

wished that I had been able to record that moment This experience made me realize that I just have to keep working

with them because even when I donrsquot think they are ldquogetting itrdquo they just might be

Q Is there anything else that you would like to share with our readers about your family or your experience with

Angelman syndrome

A For me it was always important that my children be well behaved and well mannered This means that I was sure to

be strict with them My children have to eat properly at the table with their backs straight and using utensils In past

years some of my family members would say ldquoyour too hard on them theyrsquore specialrdquo I felt like I was preparing them for

life Today those same family members now tell me what a good mom they think I am I guess that they now see that

they are well behaved and well mannered kids Now they understand why I had to enforce rules with them I feel really

supported by my family now I also have a church family who calls and checks on me and asks if I have everything that I

need Itrsquos great to feel supported

Note from the writer I found this motherrsquos story so inspirational and

the message here is to take really good care of yourself even when

itrsquos not so easy You might be a better mother for it or at least yoursquoll

feel good while doing it I know the next time that I feel too stressed to

workout or there is not enough time to eat a healthy meal I will think

of Jessica and I will certainly feel inspired to have a good workout and

meal

-Karen VanPuyenbroeck

J

e

s

s

i

c

a


LIKE US ON FACEBOOK Connect with us at facebookcomangelmantoday to get

advice talk with other parents and find out about upcoming

giveaways

35

benefits of WaterWayBabies becomes just as important as the physical stimulation your child will experience

Angelman syndrome is difficult to detect at birth and is often not diagnosed until 6 to 12 months of age or later

WaterWayBabies is an excellent way to help your infant catch up on missed milestones Regular and consistent use

of the neck ring in the small WWB pool will strengthen trunk and neck muscles for rolling over sitting standing or

walking This is a fun activity that you the parent can provide in the comfort of your own home

Difficulty sleeping is a common occurrence for individuals with Angelman syndrome One of the first noticeable

aspects of using the WaterWayBabies System may help improved sleep pattern which means parents get more

rest too

Infants with Angelman syndrome often have feeding difficulties affecting weight gain and growth Strengthening the

neck muscles has been noted to improve swallowing coordination and one child was even noted to have acquired a

coughgag reflex (when there was none) after 6 months of daily swimming in the neck ring Seizure medications

often slow bowel activity waterrsquos gentle hydrostatic pressure on the abdomen stimulates peristalsis (healthy GI

motility) so that constipation is relieved and digestion enhanced As your Angel ages obesity can become an issue

swimming is an excellent activity for overall fitness

Strabismus (crossing of the eyes) is common in Angelman syndrome Ophthalmologists have noted vision benefits

from the rotational spinning a child does in the neck ring The bright green color of the Waterway pool stimulates

visual perception as does placing brightly colored water toys within armrsquos reach Additionally if your Angel has light

pigmentation of the eyes (and skin) the Waterway System will protect from the sunrsquos harmful rays along with the

benefit of avoiding the high chlorine content of a public pool

Most individuals with Angelman syndrome make steady developmental progress and do not regress The three

sizes of neck rings will fit infants as young as two months and through young adulthood Encouraging independence

as much as possible is mutually beneficial Make learning a game by treating your Angel to WaterWayBabies

wwwwaterwaybabiescom

Angels Make A Splash With WaterWayBabies Chances are your Angel likes to spend time in the water Water play seems to be

especially appealing to most individuals with Angelman syndrome making swim

therapy a popular option Now with WaterWayBabies parents can provide their child

the simplest least expensive easiest way to experience immense joy and sense of

freedom The WaterWayBabies neck ring allows independence and safety Arms

move freely without the binding restriction of a life jacket And the body is held upright

not back-floating as with other bulky head floats So your child can join in the fun

playing comfortably in the water with friends or swimming freely on herhis own With

your Angelsrsquo strong desire for personal interaction with others the socialization

Herersquos what Angel Mom Isabel Orellana of Guatemala had to say about the product

ldquoEddyto has been using the Waterway Babies neck ring for almost one year and loves using it It

gives him a lot of independence in the pool and tub (always supervised of course) and has helped

him strengthen his hypotonic muscles We love itrdquo


36

Marital Stress in an Angelman Syndrome Family By Marc Bissonnette

86 90 double the national average ldquosignificantly higherrdquo - All those are applied often to the divorce rate amongst families

of the multiply disabled There is some debate amongst researchers about the true rate of divorce but they often focus on a

specific disability or on a generic syndrome such as Autism (I say ldquogenericrdquo because some aspects of Angelman Syndrome

falls within the Autism spectrum) ndash Whichever you believe there is no denying that stress levels and anxiety in a family caring

for one (or more) children with Angelman Syndrome (AS) are high

We know anecdotally that the divorce rate in the AS community certainly is high We have a large number of single mothers

and fathers as well a many blended families where the one of the parents is not biologically related to the Angel

This essay is not intended to look into the causes of divorce but into the stresses within an AS family marriage and how to deal

with them The divorce rate is mentioned because that is the ultimate fear of many and often the end result of those stresses

winning out over the reasons the couple married in the first place

What are those stresses They are different for every family with just as wide a variety as our Angels themselves As a partial

(and I do mean partial) list here are a few

middot sleep deprivation

middot constant messes

middot frequent breakage of items around the house

middot seizures

middot GGJNGNJ tubes

middot multiplefrequent surgeries

middot Childrens Aid involvement

middot unhelpfulnon-understanding family andor friends

middot finances

middot lack of respite

middot worry about future for Angel

hellip The list goes on ndash If you reading this are an Angel parent you know Ive missed out on a TON of stressors in a marriage

It is important to point something out right away Very few of the stresses above are going to go away They will always be with

you as long as your child lives with you ndash In fact even if they move to a dedicated home many of these stresses will not go

away What this is about is dealing with the stresses between each other man and woman husband and wife (or husband and

husband or wife and wife) in a marriage that has an AS child in the mix

The question though is how do you deal with these stresses Not just in your own headspace but with those around you Your

spouse your children and your friends and family

We all deal with stress differently Some internalize everything appearing as if they are unflappable and invincible Others ldquofly

off the handlerdquo yelling throwing things or a general foul disposition This article is about how we deal with stress and take it out

on our spouses

More often than not one spouse will feel like they are ldquodoing morerdquo in the marriage This often leads to resentment anger and

an unpleasant atmosphere in the home It can also lead to negative health effects such as high blood pressure ulcers and

headaches to name but a few What is often surprising to the spouse that feels they are doing more is that their partner the

one they may think of as ldquothat lazy bumrdquo - feels the same way No doubt some reading this will snort in disgust thinking that

with all that happens in their day their spouse could not possibly think they even approach their contribution but Your

contribution to the marriage is entirely subjective Unless your spouse is unemployed and literally sits staring at the walls all

day the chances are good that their perception of the distribution of contribution in the marriage is very different from how you

may think it is

I am not saying that the disgruntled spouse is always wrong about their perception ndash but they are not always right either

So what does this mean Is there some magical solution to all of this that would get rid of at least that one stressor that would

even out the perception of unequal work around the home

Yes there is indeed a solution but it is anything but magical

Communication


37

Yes its a tired old clicheacute but heres the thing about clicheacutes They are often rooted in fact Heres the other thing about

communication Its a two way dialog It Is not a ldquobashing sessionrdquo it is not a lecture scolding ultimatum or whine fest It is

often uncomfortable because a true dialog about what is stressing you out about your spouse means listening to what

stresses them out about you and accepting it

Heres an interesting fact Most marriage counselors will tell you this (in fact many will tell you this before they hear you speak

at all) No marriage exists where all the problems are caused by one individual None Nada Not one No exceptions

For many this is not only uncomfortable but difficult to accept as true I know this because I was one of those people who

thought I was ldquodoing it all rightrdquo and all the sources of problems were not coming from me

I Was Wrong

Until you accept this basically that you are not perfect the stress in your marriage will not go away In fact if you are

thinking right now that this is wrong that your spouse is the single sole cause of all the issues in your marriage you should

stop reading right now You have not reached the stage of personal development where you are capable of having a truly

equal marriage

So heres the thing There is a reason for each of your spouses annoying behaviors To be perfectly fair some of those

reasons may be silly some of them may be petty and some of them may be selfish Of course some of them may also be

very very valid as well but youre not going to learn those unless you communicate with your ldquoother halfrdquo

Very often that ldquoreasonrdquo they are not doing something that you would like them to do is ndash surprise The same reason you do

not do things they would like you to do Imagine that Men and women more equal than not Of course this often leads to

revealing that the couple is engaged in a very bad habit The tally system

The tally system is quite simple Most of us with siblings did this as children ldquoWell I did X and Y and she only did Z therefore

I dont have to do anything else until she doesrdquo - Whats surprising to most is that the partner feels the identical way Heres

the secret There can be no tally system in a marriage There will be days where the wife does more than the husband

There will be days where the husband does more than the wife There will even be weeks where both of these are true

However You cant ldquoadd up your tallyrdquo on a weekly or even monthly basis You have to look at it over the course of the entire

marriage Yep Im talking 50 60 or even more years

You can not however look at this ldquooverall tallyrdquo with only your eyes As mentioned above the chances are extremely good

that if you are the one feeling you do more your spouse feels the same way Heres the shocker When you actually sit down

and have the conversation about what each person feels they contribute not only might you find it surprising that they feel

they contribute a lot but that they are correct

So how do you go about having this ldquocommunicationrdquo thing

First you have to use truth No ldquobeating around the bushrdquo no roundabout ways of getting to the point no subtleties just the

plain unvarnished truth (Mind you this is not a license to be rude or unfeeling either)

Often it can be started something like this

ldquoHoney weve been going around in circles getting on each others backs and getting angry and annoyed at each other more

often than we are happy with each other We need to get back on a level playing field Can we sit down this Friday evening

after the kids are in bed and have a frank discussion with each other rdquo

How you ask is just as important as asking itself You dont want to ldquoambushrdquo your partner so asking to have the discussion

ldquoright nowrdquo isnt fair ndash In other words youve had time to think about it yet the idea is new to them The tone is important too

It is vitally important to emphasize that you feel that you both have issues that need correcting not just that you feel they are

the ones that need to change (If you really do feel they are the only ones that need to change the chance is near 100 that

you are incorrect) ndash Finally set a time when you are least likely to be interrupted by kids life or the need to get up early the

next morning Obviously with an Angel in the house this is never a guarantee but you can pick a ldquomost likelyrdquo time

When you do sit down with them ndash or even when they ask you right away what this is all about start off with what you know

has been annoying them about you This is important because you will be showing a willingness right up front that this isnt

about criticizing only them and that you realize that you are just as much a part of the issue ndash and the solution


38

Your goal is to achieve having a partner that is ldquoyour other halfrdquo - Someone to be strong when you need to be weak and someone

you can be strong for when they need you to be strong That cannot happen if one feels like a martyr like theyre the only ldquosuper

parentrdquo or if they feel theyre being used as a babysitter and a maid (Or heck all three)

Now that youve planned this discussion what is it exactly that you talk about

It is often easy to start off with a little thing Something you know you can do and you know your partner can do Often it can be a

tiny but annoying little habit they have that if only they would stop it would be one less frown in the day It really doesnt have to

be a big thing In my case it turned out that my wife and I each had a habit that really bugged the other Me I would leave

cupboard doors open all the time ndash It drove my wife absolutely batty My wife she would leave a damp towel on the bed after a

shower ndash It made my skin crawl Just changing those two little annoying habits which certainly didnt seem like a big deal to each

of us ended up making a very pleasant change in our daily lives If this sounds simplistic it is because it is Human beings tend

to resist change ndash They resist it even more when it is someone else asking the change This is why it is important to not only start

small but be equally willing to make a similar change You are not only showing your partner that it is possible but you are

showing yourself that it is possible ndash and that it has positive results

It is also necessary to get off your chest that which weighs on you most often Frequently it is the feeling that one partner

contributes more to the marriage It can be hard to get this across without sounding like an accusation or like nagging It is both

the words you choose as well as your tone that makes the difference

For example saying

ldquoI am doing all the bloody work around here I cook I clean I stay up with our daughter all night I go to all the doctors

appointments and what do you do You sit your hind end on the chair and drink beerrdquo

Is very different from ldquoI am feeling a little overwhelmed right now From my perspective I do an awful lot around the home I cook

and clean for our family I stay up with our daughter at night so you can get to work in the morning and I go to all the doctors

appointments It feels to me like your work day ends at five oclock when you get home but mine seems to have no end ndash Im not

saying that Im putting more into the marriage but I have to admit there are times especially after a rough day when I do

sometimes feel that wayrdquo

At the end of the day both partners are facing ndash and dealing with ndash daily stresses that most people absolutely could not

handle That fact alone should be enough to make you look at your partner and think ldquoIm going to make him smile today no

matter whatrdquo - It should warm your heart and make you think ldquoShes obviously just had a really bad day ndash Im going to turn this

evening into something shell remember forever with a smilerdquo

Because folks you chose your partner Your partner chose you You are both raising an Angelman child together and that even

though this has so many worries frustrations and terrible moments also has many many moments of joy triumph and pride

TO BE CONTINUEDhellip

September edition


39

Happy

Canada

Day


40


41


42


43

Thank you for checking out the first edition of Angelman Today

Great Resource Serving the

Needs of the

Angelman Community

We are just getting started

We would like to hear from you

If you would like to submit an article for Angels in Action or tell us

about a therapy that is working very well please email your story

to us at angelmantodaygmailcom

Next Month will feature Back to School topics more research more foundations Angels in Action

helpful tips and resources to help you and your family TODAY

wwwangelmantodaycom

PRICELESS Information

Delivered Digitally to you

for

FREE

44

Letter From The Editor

The Motivation

It all began with a thought a series of events like International Angelman Day and meeting other passionate parents After

receiving my sonrsquos diagnosis I immediately developed this strong desire to learn as much as I could about his genetic

condition Since there is currently no lsquotreatmentrsquo available I asked myself ldquowhat can I do to help my son todayrdquo

As I learned of the advancements in research and the wonderful work that the foundations do across the globe I was filled

with gratitude and hope But my time is limited as yours is I wondered how I could stay current with this information

Inspired by IAD I sat down to write a blog post on wwwMeetTheFamaliesofASblogspotcom and the words never came

Instead ideas of a simple resource that can give us information in the quickest way possible directly in the palm of our

hands An online magazine As I talked with Angel Moms they thought it was perfect and had the same idea It felt as

though our conversations on how we are helping our kids was leading up to this

My name is Lizzie Sordia and my son Nathan was diagnosed with Angelman Syndrome shortly after his second birthday

Our story starts out very similar to many of yours It was July to be exact Itrsquos funny how I find myself in this position just 3

years after his diagnosis But I guess this is what happens when you light the fire of a Mother Lion Donrsquot tell me what my

son canrsquot do he will show you what he can do In our journey with Nathan the hardest times were before we received his

diagnosis I knew immediately after birth something wasnrsquot right He was transported to the NICU (Neonatal Intensive Care

Unit) within 24 hours of being born After seizures started we practically lived in the hospital He was so sick and had

uncontrollable seizures that almost took him from us Doctors and specialist didnrsquot know what was wrong Fragile X tests

and others were inconclusive We faced our darkest time alone with the unknown I did not yet know of this wonderful and

helpful community that was waiting for me

Having a sick child and unanswered questions was the most helpless feeling for me and my family and I donrsquot want anyone

to feel the way we did no matter where they are on this planet It is my personal goal to reach them and provide them with

comfort or information which ever they are looking for

Nathan almost received a diagnosis of Autism thatrsquos what they were whispering around the hospital but no one wanted to

officially diagnose him He had many of the same symptoms Thanks to those whispers it lead me to find the brightest

people who knew how to help Nathan and make a difference in his life in a very short time I can now say Nathan is healthy

he walks has a few words says ldquoMamardquo everyday (melts my heart) a few signs sleeps through the night and is making

gains every day

Like most children with AS Nathan (del+) did not start off sleeping very well so since I was up I put that time to good use

I researched and reached out to AS families and learned from their experiences I am going to share my team of experts

with you as well as many others I have met along the way The best news is that there are things we can do for our kids

TODAY Many of you are doing them already

Now more than any other time in history has it been easier to unite people on a global level We are working on translating

this magazine in every language so we can all communicate freely and quickly I want to bring you the brightest minds in the

field of AS including researchers and practitioners who treat our children everyday Doctors that practice functional medicine

and Bio-Medical treatments All of these efforts will equal real suggestions that we can apply and see what will work for our

individual children TODAY Having options is important because there is a lot more going on with many of our kids then just

chromosome 15 and some doctors are missing it the way they missed the diagnosis or they blame AS for some symptomshellip

We will share with you experiences from families everywhere There is nothing more powerful than an experience

Anyone who would like to share their story CAN and you (the reader) can take what you would like from it and use it to help

you on your journey (or not)

This is our life our journey to learn and grow Itrsquos going to be wonderful terrible filled with love hugs and tears We are in it

together to help

Sincerely

Lizzie Sordia

Editor-in-Chief 2


Cover Credits

Kaylee Fingold

AS UBE3A

Photographed by



Angels in

Action

Social

Security

Benefits









Classes of Angelman

Syndrome








GF

27 Gluten Free



those with Angelman



unnoticed

15 Angels in Action





endearing called

ldquoAngelsrdquo

In Every Issue

5 Contributors

AS Research









8 Words of Wisdom

Quotes from parents




Features



4 Our Journey



Intervention







3







In finding the cure



4

Contributors


Isabel Orellana

Marc Bissonnette

Sybille Kraft

Bellamy


Angelman Today






5








AS














Dr Charles Williams


6

Welcome To Holland

Welcome To Holland

by

Emily Perl Kingsley





















planned


loss




7

















































Simon - 23 yrs AS

Words Of

Wisdom


8














Journal Bone




Abstract










Germany

Abstract











homeostasis

Journal PLoS One



America 9

Abstract



















UK mxo988bhamacuk

Abstract












Journal J Neurosci



Abstract











10


By Lois Carroll










Thank you

Grandma Lois

Sophies Smocks










11

























































13




















-Violeta Giurgi


14

Angels in Action





















Heres how we did it
















15


























speech













Written by



Associate Editor





16

17



















accordingly




















18


Welfare payments


veterans

Food stamps

Disaster assistance

















disability benefits


















19



benefits






application for SSI









20












communication









Syndrome

++++++++++++++






wide research on AS

++++++++++++++





+++++++++++++++









Non-profit page


etwork

Informal group


6089609200


22





























Angels in Action


23















one another










24


25

Reflexology




























participate happily


take their roots









Gluten Free Living

By Isabel Orellana











What is gluten



processing facility








management











Conclusion






GF


27









Helpful links





httpwwwceliaccom



































Angels in Action


29






acceptable choices










language








was upset



















30

































longer with us














































32

Happy 4th

of July


33











































34















Angelman syndrome














meal


J

e

s

s

i

c

a




giveaways

35








rest too






























36

















middot seizures





middot finances












on our spouses








may think it is





Communication


37









I Was Wrong




equal marriage


































38

















For example saying















September edition


39

Happy

Canada

Day


40


41


42


43



Needs of the

Angelman Community








wwwangelmantodaycom



for

FREE

44


Cover Credits

Kaylee Fingold

AS UBE3A

Photographed by



Angels in

Action

Social

Security

Benefits









Classes of Angelman

Syndrome








GF

27 Gluten Free



those with Angelman



unnoticed

15 Angels in Action





endearing called

ldquoAngelsrdquo

In Every Issue

5 Contributors

AS Research









8 Words of Wisdom

Quotes from parents




Features



4 Our Journey



Intervention







3







In finding the cure



4

Contributors


Isabel Orellana

Marc Bissonnette

Sybille Kraft

Bellamy


Angelman Today






5








AS














Dr Charles Williams


6

Welcome To Holland

Welcome To Holland

by

Emily Perl Kingsley





















planned


loss




7

















































Simon - 23 yrs AS

Words Of

Wisdom


8














Journal Bone




Abstract










Germany

Abstract











homeostasis

Journal PLoS One



America 9

Abstract



















UK mxo988bhamacuk

Abstract












Journal J Neurosci



Abstract











10


By Lois Carroll










Thank you

Grandma Lois

Sophies Smocks










11

























































13




















-Violeta Giurgi


14

Angels in Action





















Heres how we did it
















15


























speech













Written by



Associate Editor





16

17



















accordingly




















18


Welfare payments


veterans

Food stamps

Disaster assistance

















disability benefits


















19



benefits






application for SSI









20












communication









Syndrome

++++++++++++++






wide research on AS

++++++++++++++





+++++++++++++++









Non-profit page


etwork

Informal group


6089609200


22





























Angels in Action


23















one another










24


25

Reflexology




























participate happily


take their roots









Gluten Free Living

By Isabel Orellana











What is gluten



processing facility








management











Conclusion






GF


27









Helpful links





httpwwwceliaccom



































Angels in Action


29






acceptable choices










language








was upset



















30

































longer with us














































32

Happy 4th

of July


33











































34















Angelman syndrome














meal


J

e

s

s

i

c

a




giveaways

35








rest too






























36

















middot seizures





middot finances












on our spouses








may think it is





Communication


37









I Was Wrong




equal marriage


































38

















For example saying















September edition


39

Happy

Canada

Day


40


41


42


43



Needs of the

Angelman Community








wwwangelmantodaycom



for

FREE

44







In finding the cure



4

Contributors


Isabel Orellana

Marc Bissonnette

Sybille Kraft

Bellamy


Angelman Today






5








AS














Dr Charles Williams


6

Welcome To Holland

Welcome To Holland

by

Emily Perl Kingsley





















planned


loss




7

















































Simon - 23 yrs AS

Words Of

Wisdom


8














Journal Bone




Abstract










Germany

Abstract











homeostasis

Journal PLoS One



America 9

Abstract



















UK mxo988bhamacuk

Abstract












Journal J Neurosci



Abstract











10


By Lois Carroll










Thank you

Grandma Lois

Sophies Smocks










11

























































13




















-Violeta Giurgi


14

Angels in Action





















Heres how we did it
















15


























speech













Written by



Associate Editor





16

17



















accordingly




















18


Welfare payments


veterans

Food stamps

Disaster assistance

















disability benefits


















19



benefits






application for SSI









20












communication









Syndrome

++++++++++++++






wide research on AS

++++++++++++++





+++++++++++++++









Non-profit page


etwork

Informal group


6089609200


22





























Angels in Action


23















one another










24


25

Reflexology




























participate happily


take their roots









Gluten Free Living

By Isabel Orellana











What is gluten



processing facility








management











Conclusion






GF


27









Helpful links





httpwwwceliaccom



































Angels in Action


29






acceptable choices










language








was upset



















30

































longer with us














































32

Happy 4th

of July


33











































34















Angelman syndrome














meal


J

e

s

s

i

c

a




giveaways

35








rest too






























36

















middot seizures





middot finances












on our spouses








may think it is





Communication


37









I Was Wrong




equal marriage


































38

















For example saying















September edition


39

Happy

Canada

Day


40


41


42


43



Needs of the

Angelman Community








wwwangelmantodaycom



for

FREE

44

Contributors


Isabel Orellana

Marc Bissonnette

Sybille Kraft

Bellamy


Angelman Today






5








AS














Dr Charles Williams


6

Welcome To Holland

Welcome To Holland

by

Emily Perl Kingsley





















planned


loss




7

















































Simon - 23 yrs AS

Words Of

Wisdom


8














Journal Bone




Abstract










Germany

Abstract











homeostasis

Journal PLoS One



America 9

Abstract



















UK mxo988bhamacuk

Abstract












Journal J Neurosci



Abstract











10


By Lois Carroll










Thank you

Grandma Lois

Sophies Smocks










11

























































13




















-Violeta Giurgi


14

Angels in Action





















Heres how we did it
















15


























speech













Written by



Associate Editor





16

17



















accordingly




















18


Welfare payments


veterans

Food stamps

Disaster assistance

















disability benefits


















19



benefits






application for SSI









20












communication









Syndrome

++++++++++++++






wide research on AS

++++++++++++++





+++++++++++++++









Non-profit page


etwork

Informal group


6089609200


22





























Angels in Action


23















one another










24


25

Reflexology




























participate happily


take their roots









Gluten Free Living

By Isabel Orellana











What is gluten



processing facility








management











Conclusion






GF


27









Helpful links





httpwwwceliaccom



































Angels in Action


29






acceptable choices










language








was upset



















30

































longer with us














































32

Happy 4th

of July


33











































34















Angelman syndrome














meal


J

e

s

s

i

c

a




giveaways

35








rest too






























36

















middot seizures





middot finances












on our spouses








may think it is





Communication


37









I Was Wrong




equal marriage


































38

















For example saying















September edition


39

Happy

Canada

Day


40


41


42


43



Needs of the

Angelman Community








wwwangelmantodaycom



for

FREE

44








AS














Dr Charles Williams


6

Welcome To Holland

Welcome To Holland

by

Emily Perl Kingsley





















planned


loss




7

















































Simon - 23 yrs AS

Words Of

Wisdom


8














Journal Bone




Abstract










Germany

Abstract











homeostasis

Journal PLoS One



America 9

Abstract



















UK mxo988bhamacuk

Abstract












Journal J Neurosci



Abstract











10


By Lois Carroll










Thank you

Grandma Lois

Sophies Smocks










11

























































13




















-Violeta Giurgi


14

Angels in Action





















Heres how we did it
















15


























speech













Written by



Associate Editor





16

17



















accordingly




















18


Welfare payments


veterans

Food stamps

Disaster assistance

















disability benefits


















19



benefits






application for SSI









20












communication









Syndrome

++++++++++++++






wide research on AS

++++++++++++++





+++++++++++++++









Non-profit page


etwork

Informal group


6089609200


22





























Angels in Action


23















one another










24


25

Reflexology




























participate happily


take their roots









Gluten Free Living

By Isabel Orellana











What is gluten



processing facility








management











Conclusion






GF


27









Helpful links





httpwwwceliaccom



































Angels in Action


29






acceptable choices










language








was upset



















30

































longer with us














































32

Happy 4th

of July


33











































34















Angelman syndrome














meal


J

e

s

s

i

c

a




giveaways

35








rest too






























36

















middot seizures





middot finances












on our spouses








may think it is





Communication


37









I Was Wrong




equal marriage


































38

















For example saying















September edition


39

Happy

Canada

Day


40


41


42


43



Needs of the

Angelman Community








wwwangelmantodaycom



for

FREE

44

Welcome To Holland

Welcome To Holland

by

Emily Perl Kingsley





















planned


loss




7

















































Simon - 23 yrs AS

Words Of

Wisdom


8














Journal Bone




Abstract










Germany

Abstract











homeostasis

Journal PLoS One



America 9

Abstract



















UK mxo988bhamacuk

Abstract












Journal J Neurosci



Abstract











10


By Lois Carroll










Thank you

Grandma Lois

Sophies Smocks










11

























































13




















-Violeta Giurgi


14

Angels in Action





















Heres how we did it
















15


























speech













Written by



Associate Editor





16

17



















accordingly




















18


Welfare payments


veterans

Food stamps

Disaster assistance

















disability benefits


















19



benefits






application for SSI









20












communication









Syndrome

++++++++++++++






wide research on AS

++++++++++++++





+++++++++++++++









Non-profit page


etwork

Informal group


6089609200


22





























Angels in Action


23















one another










24


25

Reflexology




























participate happily


take their roots









Gluten Free Living

By Isabel Orellana











What is gluten



processing facility








management











Conclusion






GF


27









Helpful links





httpwwwceliaccom



































Angels in Action


29






acceptable choices










language








was upset



















30

































longer with us














































32

Happy 4th

of July


33











































34















Angelman syndrome














meal


J

e

s

s

i

c

a




giveaways

35








rest too






























36

















middot seizures





middot finances












on our spouses








may think it is





Communication


37









I Was Wrong




equal marriage


































38

















For example saying















September edition


39

Happy

Canada

Day


40


41


42


43



Needs of the

Angelman Community








wwwangelmantodaycom



for

FREE

44

















































Simon - 23 yrs AS

Words Of

Wisdom


8














Journal Bone




Abstract










Germany

Abstract











homeostasis

Journal PLoS One



America 9

Abstract



















UK mxo988bhamacuk

Abstract












Journal J Neurosci



Abstract











10


By Lois Carroll










Thank you

Grandma Lois

Sophies Smocks










11

























































13




















-Violeta Giurgi


14

Angels in Action





















Heres how we did it
















15


























speech













Written by



Associate Editor





16

17



















accordingly




















18


Welfare payments


veterans

Food stamps

Disaster assistance

















disability benefits


















19



benefits






application for SSI









20












communication









Syndrome

++++++++++++++






wide research on AS

++++++++++++++





+++++++++++++++









Non-profit page


etwork

Informal group


6089609200


22





























Angels in Action


23















one another










24


25

Reflexology




























participate happily


take their roots









Gluten Free Living

By Isabel Orellana











What is gluten



processing facility








management











Conclusion






GF


27









Helpful links





httpwwwceliaccom



































Angels in Action


29






acceptable choices










language








was upset



















30

































longer with us














































32

Happy 4th

of July


33











































34















Angelman syndrome














meal


J

e

s

s

i

c

a




giveaways

35








rest too






























36

















middot seizures





middot finances












on our spouses








may think it is





Communication


37









I Was Wrong




equal marriage


































38

















For example saying















September edition


39

Happy

Canada

Day


40


41


42


43



Needs of the

Angelman Community








wwwangelmantodaycom



for

FREE

44














Journal Bone




Abstract










Germany

Abstract











homeostasis

Journal PLoS One



America 9

Abstract



















UK mxo988bhamacuk

Abstract












Journal J Neurosci



Abstract











10


By Lois Carroll










Thank you

Grandma Lois

Sophies Smocks










11

























































13




















-Violeta Giurgi


14

Angels in Action





















Heres how we did it
















15


























speech













Written by



Associate Editor





16

17



















accordingly




















18


Welfare payments


veterans

Food stamps

Disaster assistance

















disability benefits


















19



benefits






application for SSI









20












communication









Syndrome

++++++++++++++






wide research on AS

++++++++++++++





+++++++++++++++









Non-profit page


etwork

Informal group


6089609200


22





























Angels in Action


23















one another










24


25

Reflexology




























participate happily


take their roots









Gluten Free Living

By Isabel Orellana











What is gluten



processing facility








management











Conclusion






GF


27









Helpful links





httpwwwceliaccom



































Angels in Action


29






acceptable choices










language








was upset



















30

































longer with us














































32

Happy 4th

of July


33











































34















Angelman syndrome














meal


J

e

s

s

i

c

a




giveaways

35








rest too






























36

















middot seizures





middot finances












on our spouses








may think it is





Communication


37









I Was Wrong




equal marriage


































38

















For example saying















September edition


39

Happy

Canada

Day


40


41


42


43



Needs of the

Angelman Community








wwwangelmantodaycom



for

FREE

44

Abstract



















UK mxo988bhamacuk

Abstract












Journal J Neurosci



Abstract











10


By Lois Carroll










Thank you

Grandma Lois

Sophies Smocks










11

























































13




















-Violeta Giurgi


14

Angels in Action





















Heres how we did it
















15


























speech













Written by



Associate Editor





16

17



















accordingly




















18


Welfare payments


veterans

Food stamps

Disaster assistance

















disability benefits


















19



benefits






application for SSI









20












communication









Syndrome

++++++++++++++






wide research on AS

++++++++++++++





+++++++++++++++









Non-profit page


etwork

Informal group


6089609200


22





























Angels in Action


23















one another










24


25

Reflexology




























participate happily


take their roots









Gluten Free Living

By Isabel Orellana











What is gluten



processing facility








management











Conclusion






GF


27









Helpful links





httpwwwceliaccom



































Angels in Action


29






acceptable choices










language








was upset



















30

































longer with us














































32

Happy 4th

of July


33











































34















Angelman syndrome














meal


J

e

s

s

i

c

a




giveaways

35








rest too






























36

















middot seizures





middot finances












on our spouses








may think it is





Communication


37









I Was Wrong




equal marriage


































38

















For example saying















September edition


39

Happy

Canada

Day


40


41


42


43



Needs of the

Angelman Community








wwwangelmantodaycom



for

FREE

44


By Lois Carroll










Thank you

Grandma Lois

Sophies Smocks










11

























































13




















-Violeta Giurgi


14

Angels in Action





















Heres how we did it
















15


























speech













Written by



Associate Editor





16

17



















accordingly




















18


Welfare payments


veterans

Food stamps

Disaster assistance

















disability benefits


















19



benefits






application for SSI









20












communication









Syndrome

++++++++++++++






wide research on AS

++++++++++++++





+++++++++++++++









Non-profit page


etwork

Informal group


6089609200


22





























Angels in Action


23















one another










24


25

Reflexology




























participate happily


take their roots









Gluten Free Living

By Isabel Orellana











What is gluten



processing facility








management











Conclusion






GF


27









Helpful links





httpwwwceliaccom



































Angels in Action


29






acceptable choices










language








was upset



















30

































longer with us














































32

Happy 4th

of July


33











































34















Angelman syndrome














meal


J

e

s

s

i

c

a




giveaways

35








rest too






























36

















middot seizures





middot finances












on our spouses








may think it is





Communication


37









I Was Wrong




equal marriage


































38

















For example saying















September edition


39

Happy

Canada

Day


40


41


42


43



Needs of the

Angelman Community








wwwangelmantodaycom



for

FREE

44

























































13




















-Violeta Giurgi


14

Angels in Action





















Heres how we did it
















15


























speech













Written by



Associate Editor





16

17



















accordingly




















18


Welfare payments


veterans

Food stamps

Disaster assistance

















disability benefits


















19



benefits






application for SSI









20












communication









Syndrome

++++++++++++++






wide research on AS

++++++++++++++





+++++++++++++++









Non-profit page


etwork

Informal group


6089609200


22





























Angels in Action


23















one another










24


25

Reflexology




























participate happily


take their roots









Gluten Free Living

By Isabel Orellana











What is gluten



processing facility








management











Conclusion






GF


27









Helpful links





httpwwwceliaccom



































Angels in Action


29






acceptable choices










language








was upset



















30

































longer with us














































32

Happy 4th

of July


33











































34















Angelman syndrome














meal


J

e

s

s

i

c

a




giveaways

35








rest too






























36

















middot seizures





middot finances












on our spouses








may think it is





Communication


37









I Was Wrong




equal marriage


































38

















For example saying















September edition


39

Happy

Canada

Day


40


41


42


43



Needs of the

Angelman Community








wwwangelmantodaycom



for

FREE

44












































13




















-Violeta Giurgi


14

Angels in Action





















Heres how we did it
















15


























speech













Written by



Associate Editor





16

17



















accordingly




















18


Welfare payments


veterans

Food stamps

Disaster assistance

















disability benefits


















19



benefits






application for SSI









20












communication









Syndrome

++++++++++++++






wide research on AS

++++++++++++++





+++++++++++++++









Non-profit page


etwork

Informal group


6089609200


22





























Angels in Action


23















one another










24


25

Reflexology




























participate happily


take their roots









Gluten Free Living

By Isabel Orellana











What is gluten



processing facility








management











Conclusion






GF


27









Helpful links





httpwwwceliaccom



































Angels in Action


29






acceptable choices










language








was upset



















30

































longer with us














































32

Happy 4th

of July


33











































34















Angelman syndrome














meal


J

e

s

s

i

c

a




giveaways

35








rest too






























36

















middot seizures





middot finances












on our spouses








may think it is





Communication


37









I Was Wrong




equal marriage


































38

















For example saying















September edition


39

Happy

Canada

Day


40


41


42


43



Needs of the

Angelman Community








wwwangelmantodaycom



for

FREE

44




















-Violeta Giurgi


14

Angels in Action





















Heres how we did it
















15


























speech













Written by



Associate Editor





16

17



















accordingly




















18


Welfare payments


veterans

Food stamps

Disaster assistance

















disability benefits


















19



benefits






application for SSI









20












communication









Syndrome

++++++++++++++






wide research on AS

++++++++++++++





+++++++++++++++









Non-profit page


etwork

Informal group


6089609200


22





























Angels in Action


23















one another










24


25

Reflexology




























participate happily


take their roots









Gluten Free Living

By Isabel Orellana











What is gluten



processing facility








management











Conclusion






GF


27









Helpful links





httpwwwceliaccom



































Angels in Action


29






acceptable choices










language








was upset



















30

































longer with us














































32

Happy 4th

of July


33











































34















Angelman syndrome














meal


J

e

s

s

i

c

a




giveaways

35








rest too






























36

















middot seizures





middot finances












on our spouses








may think it is





Communication


37









I Was Wrong




equal marriage


































38

















For example saying















September edition


39

Happy

Canada

Day


40


41


42


43



Needs of the

Angelman Community








wwwangelmantodaycom



for

FREE

44

Angels in Action





















Heres how we did it
















15


























speech













Written by



Associate Editor





16

17



















accordingly




















18


Welfare payments


veterans

Food stamps

Disaster assistance

















disability benefits


















19



benefits






application for SSI









20












communication









Syndrome

++++++++++++++






wide research on AS

++++++++++++++





+++++++++++++++









Non-profit page


etwork

Informal group


6089609200


22





























Angels in Action


23















one another










24


25

Reflexology




























participate happily


take their roots









Gluten Free Living

By Isabel Orellana











What is gluten



processing facility








management











Conclusion






GF


27









Helpful links





httpwwwceliaccom



































Angels in Action


29






acceptable choices










language








was upset



















30

































longer with us














































32

Happy 4th

of July


33











































34















Angelman syndrome














meal


J

e

s

s

i

c

a




giveaways

35








rest too






























36

















middot seizures





middot finances












on our spouses








may think it is





Communication


37









I Was Wrong




equal marriage


































38

















For example saying















September edition


39

Happy

Canada

Day


40


41


42


43



Needs of the

Angelman Community








wwwangelmantodaycom



for

FREE

44


























speech













Written by



Associate Editor





16

17



















accordingly




















18


Welfare payments


veterans

Food stamps

Disaster assistance

















disability benefits


















19



benefits






application for SSI









20












communication









Syndrome

++++++++++++++






wide research on AS

++++++++++++++





+++++++++++++++









Non-profit page


etwork

Informal group


6089609200


22





























Angels in Action


23















one another










24


25

Reflexology




























participate happily


take their roots









Gluten Free Living

By Isabel Orellana











What is gluten



processing facility








management











Conclusion






GF


27









Helpful links





httpwwwceliaccom



































Angels in Action


29






acceptable choices










language








was upset



















30

































longer with us














































32

Happy 4th

of July


33











































34















Angelman syndrome














meal


J

e

s

s

i

c

a




giveaways

35








rest too






























36

















middot seizures





middot finances












on our spouses








may think it is





Communication


37









I Was Wrong




equal marriage


































38

















For example saying















September edition


39

Happy

Canada

Day


40


41


42


43



Needs of the

Angelman Community








wwwangelmantodaycom



for

FREE

44

17



















accordingly




















18


Welfare payments


veterans

Food stamps

Disaster assistance

















disability benefits


















19



benefits






application for SSI









20












communication









Syndrome

++++++++++++++






wide research on AS

++++++++++++++





+++++++++++++++









Non-profit page


etwork

Informal group


6089609200


22





























Angels in Action


23















one another










24


25

Reflexology




























participate happily


take their roots









Gluten Free Living

By Isabel Orellana











What is gluten



processing facility








management











Conclusion






GF


27









Helpful links





httpwwwceliaccom



































Angels in Action


29






acceptable choices










language








was upset



















30

































longer with us














































32

Happy 4th

of July


33











































34















Angelman syndrome














meal


J

e

s

s

i

c

a




giveaways

35








rest too






























36

















middot seizures





middot finances












on our spouses








may think it is





Communication


37









I Was Wrong




equal marriage


































38

















For example saying















September edition


39

Happy

Canada

Day


40


41


42


43



Needs of the

Angelman Community








wwwangelmantodaycom



for

FREE

44



















accordingly




















18


Welfare payments


veterans

Food stamps

Disaster assistance

















disability benefits


















19



benefits






application for SSI









20












communication









Syndrome

++++++++++++++






wide research on AS

++++++++++++++





+++++++++++++++









Non-profit page


etwork

Informal group


6089609200


22





























Angels in Action


23















one another










24


25

Reflexology




























participate happily


take their roots









Gluten Free Living

By Isabel Orellana











What is gluten



processing facility








management











Conclusion






GF


27









Helpful links





httpwwwceliaccom



































Angels in Action


29






acceptable choices










language








was upset



















30

































longer with us














































32

Happy 4th

of July


33











































34















Angelman syndrome














meal


J

e

s

s

i

c

a




giveaways

35








rest too






























36

















middot seizures





middot finances












on our spouses








may think it is





Communication


37









I Was Wrong




equal marriage


































38

















For example saying















September edition


39

Happy

Canada

Day


40


41


42


43



Needs of the

Angelman Community








wwwangelmantodaycom



for

FREE

44


Welfare payments


veterans

Food stamps

Disaster assistance

















disability benefits


















19



benefits






application for SSI









20












communication









Syndrome

++++++++++++++






wide research on AS

++++++++++++++





+++++++++++++++









Non-profit page


etwork

Informal group


6089609200


22





























Angels in Action


23















one another










24


25

Reflexology




























participate happily


take their roots









Gluten Free Living

By Isabel Orellana











What is gluten



processing facility








management











Conclusion






GF


27









Helpful links





httpwwwceliaccom



































Angels in Action


29






acceptable choices










language








was upset



















30

































longer with us














































32

Happy 4th

of July


33











































34















Angelman syndrome














meal


J

e

s

s

i

c

a




giveaways

35








rest too






























36

















middot seizures





middot finances












on our spouses








may think it is





Communication


37









I Was Wrong




equal marriage


































38

















For example saying















September edition


39

Happy

Canada

Day


40


41


42


43



Needs of the

Angelman Community








wwwangelmantodaycom



for

FREE

44



benefits






application for SSI









20












communication









Syndrome

++++++++++++++






wide research on AS

++++++++++++++





+++++++++++++++









Non-profit page


etwork

Informal group


6089609200


22





























Angels in Action


23















one another










24


25

Reflexology




























participate happily


take their roots









Gluten Free Living

By Isabel Orellana











What is gluten



processing facility








management











Conclusion






GF


27









Helpful links





httpwwwceliaccom



































Angels in Action


29






acceptable choices










language








was upset



















30

































longer with us














































32

Happy 4th

of July


33











































34















Angelman syndrome














meal


J

e

s

s

i

c

a




giveaways

35








rest too






























36

















middot seizures





middot finances












on our spouses








may think it is





Communication


37









I Was Wrong




equal marriage


































38

















For example saying















September edition


39

Happy

Canada

Day


40


41


42


43



Needs of the

Angelman Community








wwwangelmantodaycom



for

FREE

44












communication









Syndrome

++++++++++++++






wide research on AS

++++++++++++++





+++++++++++++++









Non-profit page


etwork

Informal group


6089609200


22





























Angels in Action


23















one another










24


25

Reflexology




























participate happily


take their roots









Gluten Free Living

By Isabel Orellana











What is gluten



processing facility








management











Conclusion






GF


27









Helpful links





httpwwwceliaccom



































Angels in Action


29






acceptable choices










language








was upset



















30

































longer with us














































32

Happy 4th

of July


33











































34















Angelman syndrome














meal


J

e

s

s

i

c

a




giveaways

35








rest too






























36

















middot seizures





middot finances












on our spouses








may think it is





Communication


37









I Was Wrong




equal marriage


































38

















For example saying















September edition


39

Happy

Canada

Day


40


41


42


43



Needs of the

Angelman Community








wwwangelmantodaycom



for

FREE

44

22





























Angels in Action


23















one another










24


25

Reflexology




























participate happily


take their roots









Gluten Free Living

By Isabel Orellana











What is gluten



processing facility








management











Conclusion






GF


27









Helpful links





httpwwwceliaccom



































Angels in Action


29






acceptable choices










language








was upset



















30

































longer with us














































32

Happy 4th

of July


33











































34















Angelman syndrome














meal


J

e

s

s

i

c

a




giveaways

35








rest too






























36

















middot seizures





middot finances












on our spouses








may think it is





Communication


37









I Was Wrong




equal marriage


































38

















For example saying















September edition


39

Happy

Canada

Day


40


41


42


43



Needs of the

Angelman Community








wwwangelmantodaycom



for

FREE

44





























Angels in Action


23















one another










24


25

Reflexology




























participate happily


take their roots









Gluten Free Living

By Isabel Orellana











What is gluten



processing facility








management











Conclusion






GF


27









Helpful links





httpwwwceliaccom



































Angels in Action


29






acceptable choices










language








was upset



















30

































longer with us














































32

Happy 4th

of July


33











































34















Angelman syndrome














meal


J

e

s

s

i

c

a




giveaways

35








rest too






























36

















middot seizures





middot finances












on our spouses








may think it is





Communication


37









I Was Wrong




equal marriage


































38

















For example saying















September edition


39

Happy

Canada

Day


40


41


42


43



Needs of the

Angelman Community








wwwangelmantodaycom



for

FREE

44















one another










24


25

Reflexology




























participate happily


take their roots









Gluten Free Living

By Isabel Orellana











What is gluten



processing facility








management











Conclusion






GF


27









Helpful links





httpwwwceliaccom



































Angels in Action


29






acceptable choices










language








was upset



















30

































longer with us














































32

Happy 4th

of July


33











































34















Angelman syndrome














meal


J

e

s

s

i

c

a




giveaways

35








rest too






























36

















middot seizures





middot finances












on our spouses








may think it is





Communication


37









I Was Wrong




equal marriage


































38

















For example saying















September edition


39

Happy

Canada

Day


40


41


42


43



Needs of the

Angelman Community








wwwangelmantodaycom



for

FREE

44


25

Reflexology




























participate happily


take their roots









Gluten Free Living

By Isabel Orellana











What is gluten



processing facility








management











Conclusion






GF


27









Helpful links





httpwwwceliaccom



































Angels in Action


29






acceptable choices










language








was upset



















30

































longer with us














































32

Happy 4th

of July


33











































34















Angelman syndrome














meal


J

e

s

s

i

c

a




giveaways

35








rest too






























36

















middot seizures





middot finances












on our spouses








may think it is





Communication


37









I Was Wrong




equal marriage


































38

















For example saying















September edition


39

Happy

Canada

Day


40


41


42


43



Needs of the

Angelman Community








wwwangelmantodaycom



for

FREE

44

Reflexology




























participate happily


take their roots









Gluten Free Living

By Isabel Orellana











What is gluten



processing facility








management











Conclusion






GF


27









Helpful links





httpwwwceliaccom



































Angels in Action


29






acceptable choices










language








was upset



















30

































longer with us














































32

Happy 4th

of July


33











































34















Angelman syndrome














meal


J

e

s

s

i

c

a




giveaways

35








rest too






























36

















middot seizures





middot finances












on our spouses








may think it is





Communication


37









I Was Wrong




equal marriage


































38

















For example saying















September edition


39

Happy

Canada

Day


40


41


42


43



Needs of the

Angelman Community








wwwangelmantodaycom



for

FREE

44

Gluten Free Living

By Isabel Orellana











What is gluten



processing facility








management











Conclusion






GF


27









Helpful links





httpwwwceliaccom



































Angels in Action


29






acceptable choices










language








was upset



















30

































longer with us














































32

Happy 4th

of July


33











































34















Angelman syndrome














meal


J

e

s

s

i

c

a




giveaways

35








rest too






























36

















middot seizures





middot finances












on our spouses








may think it is





Communication


37









I Was Wrong




equal marriage


































38

















For example saying















September edition


39

Happy

Canada

Day


40


41


42


43



Needs of the

Angelman Community








wwwangelmantodaycom



for

FREE

44









Helpful links





httpwwwceliaccom



































Angels in Action


29






acceptable choices










language








was upset



















30

































longer with us














































32

Happy 4th

of July


33











































34















Angelman syndrome














meal


J

e

s

s

i

c

a




giveaways

35








rest too






























36

















middot seizures





middot finances












on our spouses








may think it is





Communication


37









I Was Wrong




equal marriage


































38

















For example saying















September edition


39

Happy

Canada

Day


40


41


42


43



Needs of the

Angelman Community








wwwangelmantodaycom



for

FREE

44






























Angels in Action


29






acceptable choices










language








was upset



















30

































longer with us














































32

Happy 4th

of July


33











































34















Angelman syndrome














meal


J

e

s

s

i

c

a




giveaways

35








rest too






























36

















middot seizures





middot finances












on our spouses








may think it is





Communication


37









I Was Wrong




equal marriage


































38

















For example saying















September edition


39

Happy

Canada

Day


40


41


42


43



Needs of the

Angelman Community








wwwangelmantodaycom



for

FREE

44






acceptable choices










language








was upset



















30

































longer with us














































32

Happy 4th

of July


33











































34















Angelman syndrome














meal


J

e

s

s

i

c

a




giveaways

35








rest too






























36

















middot seizures





middot finances












on our spouses








may think it is





Communication


37









I Was Wrong




equal marriage


































38

















For example saying















September edition


39

Happy

Canada

Day


40


41


42


43



Needs of the

Angelman Community








wwwangelmantodaycom



for

FREE

44

































longer with us














































32

Happy 4th

of July


33











































34















Angelman syndrome














meal


J

e

s

s

i

c

a




giveaways

35








rest too






























36

















middot seizures





middot finances












on our spouses








may think it is





Communication


37









I Was Wrong




equal marriage


































38

















For example saying















September edition


39

Happy

Canada

Day


40


41


42


43



Needs of the

Angelman Community








wwwangelmantodaycom



for

FREE

44









































32

Happy 4th

of July


33











































34















Angelman syndrome














meal


J

e

s

s

i

c

a




giveaways

35








rest too






























36

















middot seizures





middot finances












on our spouses








may think it is





Communication


37









I Was Wrong




equal marriage


































38

















For example saying















September edition


39

Happy

Canada

Day


40


41


42


43



Needs of the

Angelman Community








wwwangelmantodaycom



for

FREE

44

Happy 4th

of July


33











































34















Angelman syndrome














meal


J

e

s

s

i

c

a




giveaways

35








rest too






























36

















middot seizures





middot finances












on our spouses








may think it is





Communication


37









I Was Wrong




equal marriage


































38

















For example saying















September edition


39

Happy

Canada

Day


40


41


42


43



Needs of the

Angelman Community








wwwangelmantodaycom



for

FREE

44











































34















Angelman syndrome














meal


J

e

s

s

i

c

a




giveaways

35








rest too






























36

















middot seizures





middot finances












on our spouses








may think it is





Communication


37









I Was Wrong




equal marriage


































38

















For example saying















September edition


39

Happy

Canada

Day


40


41


42


43



Needs of the

Angelman Community








wwwangelmantodaycom



for

FREE

44















Angelman syndrome














meal


J

e

s

s

i

c

a




giveaways

35








rest too






























36

















middot seizures





middot finances












on our spouses








may think it is





Communication


37









I Was Wrong




equal marriage


































38

















For example saying















September edition


39

Happy

Canada

Day


40


41


42


43



Needs of the

Angelman Community








wwwangelmantodaycom



for

FREE

44








rest too






























36

















middot seizures





middot finances












on our spouses








may think it is





Communication


37









I Was Wrong




equal marriage


































38

















For example saying















September edition


39

Happy

Canada

Day


40


41


42


43



Needs of the

Angelman Community








wwwangelmantodaycom



for

FREE

44

















middot seizures





middot finances












on our spouses








may think it is





Communication


37









I Was Wrong




equal marriage


































38

















For example saying















September edition


39

Happy

Canada

Day


40


41


42


43



Needs of the

Angelman Community








wwwangelmantodaycom



for

FREE

44









I Was Wrong




equal marriage


































38

















For example saying















September edition


39

Happy

Canada

Day


40


41


42


43



Needs of the

Angelman Community








wwwangelmantodaycom



for

FREE

44

















For example saying















September edition


39

Happy

Canada

Day


40


41


42


43



Needs of the

Angelman Community








wwwangelmantodaycom



for

FREE

44

Happy

Canada

Day


40


41


42


43



Needs of the

Angelman Community








wwwangelmantodaycom



for

FREE

44


41


42


43



Needs of the

Angelman Community








wwwangelmantodaycom



for

FREE

44


42


43



Needs of the

Angelman Community








wwwangelmantodaycom



for

FREE

44


43



Needs of the

Angelman Community








wwwangelmantodaycom



for

FREE

44



Needs of the

Angelman Community








wwwangelmantodaycom



for

FREE

44

Date post:	23-Mar-2016
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Angelman Today July - August Edition 2013

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