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News & Notes - March/April 2010

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March/April 2012 issue of News & Notes Newsletter. Published by the Down Syndrome Aim High Resource Center.
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N N EW EW S S an an d d N N OTES OTES a publication of Down Syndrome Down Syndrome Aim High Resource Center, Inc. Aim High Resource Center, Inc. Providing parent-to-parent and professional services and support to individuals with Down syndrome and their families and educating the broader community about Down syndrome. VOLUME 28, NUMBER 1 VOLUME 28, NUMBER 1 MARCH/APRIL 2010 MARCH/APRIL 2010 Announcing the 2010 Annual Beyond our Wildest Dreams Conference! Announcing the 2010 Annual Beyond our Wildest Dreams Conference! Registration is now open for the Registration is now open for the DSAHRC conference DSAHRC conference and this year and this year you can register you can register on-line on-line at at www.dsahrc.org www.dsahrc.org !!! !!! The theme of this year’s conference is Teamwork and the Conference Committee “Team” has put together yet another great event! Here are just a few highlights… Here are just a few highlights… Educational workshops on literacy, transition, inclusive education, executive functioning and much, much more! It’s all taking place Friday and Saturday, April 23-24, at the Holiday Inn Albany and it’s not too late to register! For more information about the Conference or the Family Dance, please contact the DSAHRC at (518) 438-1113 or [email protected] And don’t forget the And don’t forget the Family Dance Family Dance featuring the live music of featuring the live music of Potential Unlimited, Inc. Potential Unlimited, Inc. taking place the night before taking place the night before the Conference! the Conference! Because siblings play an important role in the lives of people with Down syndrome... ...we have two national speakers who will conduct a day long program for brothers and sisters of individuals with Down syndrome. Dr.Brian Skotko, MD, MPP, who is himself a sibling, and Susan Levine, MA, CSW, are co-authors of the book, Fasten Your Seatbelt: A Crash Course On Down Syndrome for Brothers and Sisters. They will conduct a fabulous program for siblings. They’ll also present the Plenary Session to let parents know what goes on in the hearts and minds of these great kids! Jason Kingsley and Mitchell Levitz, co-authors of the book “Count Us In”, as our keynote speakers. They will share their stories of growing up with Down syndrome and working together to publish a written documentary of their friendship as well as their individual accomplishments.
Transcript
Page 1: News & Notes - March/April 2010

NNNNEEWWEEWW SSSS aannaann dddd NNNNOOTTEESSOOTTEESSa publication of

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Providing parent-to-parent and professional services and support to individuals with Down syndrome and their families and educating the broader community about Down syndrome.

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AAnnnnoouunncciinngg tthhee 22001100 AAnnnnuuaall BBeeyyoonndd oouurr WWiillddeesstt DDrreeaammss CCoonnffeerreennccee!!AAnnnnoouunncciinngg tthhee 22001100 AAnnnnuuaall BBeeyyoonndd oouurr WWiillddeesstt DDrreeaammss CCoonnffeerreennccee!!RReeggiissttrraattiioonn iiss nnooww ooppeenn ffoorr tthhee RReeggiissttrraattiioonn iiss nnooww ooppeenn ffoorr tthhee DDSSAAHHRRCC ccoonnffeerreenncceeDDSSAAHHRRCC ccoonnffeerreennccee aanndd tthhiiss yyeeaarr aanndd tthhiiss yyeeaarr

yyoouu ccaann rreeggiisstteerr yyoouu ccaann rreeggiisstteerr oonn--lliinneeoonn--lliinnee aattaatt wwwwww..ddssaahhrrcc..oorrggwwwwww..ddssaahhrrcc..oorrgg !!!!!!!!!!!!

The theme of this year’s conference is Teamworkand the Conference Committee “Team” has put

together yet another great event!

HHeerree aarree jjuusstt aa ffeeww hhiigghhlliigghhttss……HHeerree aarree jjuusstt aa ffeeww hhiigghhlliigghhttss……

EEdduuccaattiioonnaall wwoorrkksshhooppss

oonn lliitteerraaccyy,, ttrraannssiittiioonn,,

iinncclluussiivvee eedduuccaattiioonn,,

eexxeeccuuttiivvee ffuunnccttiioonniinngg

aanndd mmuucchh,, mmuucchhmmoorree!!

It’s all taking place Friday and Saturday, April 23-24, at the Holiday Inn Albany

and it’s not too late to register!For more information about the Conference or

the Family Dance, please contact the DSAHRC at (518) 438-1113 or [email protected]

AAnndd ddoonn’’tt ffoorrggeett tthhee AAnndd ddoonn’’tt ffoorrggeett tthhee FFaammiillyy DDaannccee

FFaammiillyy DDaanncceeffeeaattuurriinngg tthhee lliivvee mmuussiicc ooff

ffeeaattuurriinngg tthhee lliivvee mmuussiicc ooff PPootteennttiiaall UUnnlliimmiitteedd,, IInncc..

PPootteennttiiaall UUnnlliimmiitteedd,, IInncc..ttaakkiinngg ppllaaccee tthhee nniigghhtt bbeeffoorree

ttaakkiinngg ppllaaccee tthhee nniigghhtt bbeeffoorree tthhee CCoonnffeerreennccee!!tthhee CCoonnffeerreennccee!!

BBeeccaauussee ssiibblliinnggss ppllaayy aann iimmppoorrttaanntt rroollee iinn tthhee lliivveess

ooff ppeeooppllee wwiitthh DDoowwnn ssyynnddrroommee......

...we have two national speakers who will conduct a day long

program for brothers and sisters of individuals with

Down syndrome. Dr.Brian Skotko, MD, MPP, who is himself a sibling,

and Susan Levine, MA, CSW, are co-authors of the book, Fasten Your

Seatbelt: A Crash Course On Down Syndrome for Brothers and

Sisters. They will conduct a fabulous program for siblings. They’ll also

present the Plenary Session to let parents know what goes on in the

hearts and minds of these great kids!

JJaassoonn KKiinnggsslleeyy aanndd MMiittcchheellll LLeevviittzz,,ccoo--aauutthhoorrss ooff tthhee bbooookk ““CCoouunntt UUssIInn””,, aass oouurr kkeeyynnoottee ssppeeaakkeerrss..They will share their stories of growing upwith Down syndrome and working together to publish a written documentaryof their friendship as well as their individual accomplishments.

Page 2: News & Notes - March/April 2010

I’ve been spending more time than usual at the DSAHRC recentlyand I’ve got to tell you – it’s a busy place! On a given day, Diane Langand I were figuring out how to print newsletters on the spiffy new officecopying machine, while an educational seminar was taking place in themain meeting space, phones were ringing, and people were picking upor dropping off raffle tickets and/or raffle money – it was a bustlinghotbed of activity! Some days you’ll find a playgroup at the DSAHRC, orMarietta Velvis and self-advocates Pat Morgan, Brie Nobis or DougRogers, preparing presentations to be given at schools. It’s great to seethis space being used in so many ways, bringing folks together to helpeach other, problem-solve, and support the works of our organization.

As I was putting together this issue of News and Notes I was againstruck by how busy the DSAHRC is, and not just at 1 Marcus Boulevard.Our staff and volunteers, family and friends, have been all over theCapital District this past year, as the Annual Review on pages 6-9 will tellyou. You’ll also see that 2010 promises to be just as busy, reaching outto our membership in new, exciting ways as our staff grows (see page 4)and programs are created or expanded. Our Self-Advocates are moreactive than ever (page 5). On April 26th we will elect a new Board,including five new officers and directors. New blood, fresh ideas, greatenergy, while parent-to-parent support and knowledgeable staff continueto provide the help and encouragement we’ve come to expect and need.

Busy times, exciting times, good times!

PPAAGGEE 22 NNEEWWSS AANNDD NNOOTTEESS MMAARRCCHH//AAPPRRIILL 22001100

Statement of Policy and DisclaimerThis newsletter reports items of interest relating to Down syndrome and will provide a forum for others. The Down Syndrome Aim High Resource Center (DSAHRC) does not promote or recommend any therapy, treatment, educational setting, etc. We will not espouse any particular political or religious view. Individuals or organizations referred to do not necessarily endorse this publication or its editors. We wish to bring together thoseinterested in Down syndrome and attempt to create an optimistic outlook and attitude.

In material submitted for publication, the editor reserves the right to make corrections as appropriate and in accord with established editorial practice.

Printing of ArticlesWe welcome articles from parents, individuals with Down syndrome, professionals, and other interested parties. Please send material for consideration to the mailing address (at left).

Contents may be reproduced if credit is given to the author and News and Notes; kindly send us acopy. Please note that for material which News and Notes reprinted with specific permission, you must contact the original source.

is published six times a year byDown Syndrome Aim High Resource Center, Inc.

1 Marcus Blvd., Suite 105, Albany, NY 12205Phone: (518) 438-1113 Website: www.dsahrc.org

Editor: Carol Rowell, (518) 438-1113, [email protected]

Publications Committee Chair: Brian Collier, (518) 439-5964

Staff: Diane E. Lang, Jody Nicholls Murphy,Ann Nobis, Brianne Nobis

NNNNEEWWEEWW SSSS aannaann dddd NNNNOOTTEESSOOTTEESS

Conference and Dance.....Front Cover

Upcoming Events............................... 3

President’s Message..........................4New Respite Option............................4Self-Advocates Update.......................52009 Annual Review........................6-9

Thanks, DSAHRC Seminars............10

Board Elections, Help!.......Back Cover

IINNSSIIDDEE TTHHIISS IISSSSUUEEIINNSSIIDDEE TTHHIISS IISSSSUUEE

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Don’t forget to contribute to KevinCarmody’s Bar Mitzvah project!

With the help of his dad, Mike, he’s collecting returnables in support of the

DSAHRC, so save your cans and bottles and call (518) 459-3676 or

email [email protected]

for pickup at your home or office.

You can also bring your empties to

19A Vatrano Road, Albany

or drop them off at the DSAHRC!

OOnn tthhee IInntteerrnneett......OOnn tthhee IInntteerrnneett......In an effort to share information and ideas that we’ve picked up from the

ever-fascinating Internet, we’ll be passing along websites that come recommended by our readers.

Gayle Farman, DSAHRC Board member, Conference Chair, and, most importantly, Mom, suggests checking out www.symbolworld.org – a very cool

website that offers free stories, movie reviews, and even a magazine on currentevents. Everything is told through symbols and words, it’s colorful and

attention-grabbing, and readers are encouraged to send in their own symbolstories, recipes, etc. Lastly, it’s free, so check it out!

Page 3: News & Notes - March/April 2010

MMAARRCCHH//AAPPRRIILL 22001100 NNEEWWSS AANNDD NNOOTTEESS PPAAGGEE 33

DSAHRC SEMINAR – Thursday, April 15 – 6:30-8:30 pm – Julie Keegan, Esq. will present The Scoop on Special

Ed Services & Extended School Year. See page 10 for more details.

DSAHRC SELF-ADVOCATES BOWLING – Saturday, April 17 – 12:30-2:30 pm – Food, friends and fun at Spare TimeBowling in Latham! See page 5 for more information.

DSAHRC SEMINAR – Thursday, April 22 – 6:30-8:30 pm – JulieKeegan, Esq. will present Meaningfully Participating in CSE

Meetings. See page 10 for more details.

DSAHRC FAMILY DANCE, RAFFLE DRAWING AND ANNUALCONFERENCE – Friday and Saturday, April 23 and 24 – Be there!

DSAHRC GENERAL MEMBERSHIP MEETING AND ELECTIONS –Monday, April 26 – 6:30 pm – Please note special date! All DSAHRCmembers are encouraged to attend! See back cover for details.

DSAHRC SEMINAR – Wednesday, May 12 – 6-8 pm – William VanEvera, CLU, ChFC, and Tara Ann Pleat, Esq. will present Special

Care Planning: What Happens When.... Details on page 10.

DSAHRC BOARD MEETING – Monday, June 7 – 6:30 pm – Join us!

UUPPCCOOMMIINNGG EEVVEENNTTSSUUPPCCOOMMIINNGG EEVVEENNTTSS--LLooccaallllyy aanndd NNaattiioonnaallllyy--LLooccaallllyy aanndd NNaattiioonnaallllyy

For up-to-date information on items of interest check out the Calendar of Eventson the DSAHRC website at www.dsahrc.org

PPPPllaayy GGrroouupp GGaatthheerriinnggss aanndd SSuuppppoorrtt GGrroouupp MMeeeettiinnggssllaayy GGrroouupp GGaatthheerriinnggss aanndd SSuuppppoorrtt GGrroouupp MMeeeettiinnggssSocial groups are a great source of fun and support. Got a gang that gets together regularly? Want to start one?

Let the DSAHRC know and we’ll be glad to promote your ideas!Triple Play – For parents of babies, toddlers and preschoolers with Down syndrome. Meets the last Friday of themonth in various locations. Contact person: Kirin Buckley at [email protected].

Tri’d and True Friends – Meets on Saturdays/Sundays in Saratoga/Wilton area. No age limit to participants –everyone’s welcome! Contact person: Joni Rhodes at (518) 695-4627 or at [email protected].

Loving Up the Downs (LUDS) – Parent-driven support network in the Oneonta area, currently serving Otsego,Chenango, and Delaware counties. Contact person: Lisa Depperman at (607) 433-6260.

May 1st is the deadline for the next issue of News and Notes. Please contact Carol Rowell at the DSAHRC at (518) 438-1113 or at [email protected] for information on submitting items. Thanks!

Unless otherwise stated, all activities take place at the DSAHRC office, 1 Marcus Blvd., Suite 105, (just off Wolf Roadnear the Holiday Inn). Look for listings of play groups and support meetings in box below!!

PPPPLLEEAASSEELLEEAASSEE HHHHEELLPPEELLPP OOOOUURRUURRFFFFAAMMIILLIIEESSAAMMIILLIIEESS!!!!

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wweerree iinn aa sseerriioouuss ccaarr aacccciiddeennttwweerree iinn aa sseerriioouuss ccaarr aacccciiddeennttaanndd aarree ffaacciinngg mmoonntthhss ooffaanndd aarree ffaacciinngg mmoonntthhss ooff

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PPlleeaassee ccoonnssiiddeerr hheellppiinngg tthheesseePPlleeaassee ccoonnssiiddeerr hheellppiinngg tthheesseeffaammiilliieessffaammiilliieess –– –– ccoonnttaacctt tthheeccoonnttaacctt tthhee

DDSSAARRHHCC ttoo lleeaarrnn mmoorree..DDSSAARRHHCC ttoo lleeaarrnn mmoorree..

Capital District Bike Camp – July 5-9 at theAchilles Ice Arena at Union College in Schenectady

DSAHRC Night with the ValleyCats – Tuesday, August 3rd

at the Joe Bruno Stadium in Troy

DSAHRC Family Picnic – Saturday, August 21st

at Colonie Town Park

14th Annual DSAHRC Buddy Walk – Sunday, October 3rd

at Central Park in Schenectady

DSAHRC Gala – Friday, October 22nd

at the Canfield Casino in Saratoga Springs

SSSSAA

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Page 4: News & Notes - March/April 2010

AA MMeessssaaggee FFrroomm tthhee PPrreessiiddeenntt,, HHaarrmm VVeellvviissAA MMeessssaaggee FFrroomm tthhee PPrreessiiddeenntt,, HHaarrmm VVeellvviiss ......““DDSSAAHHRRCC SSttaaffff AAddddiittiioonnss,, tthhee BBeeggiinnnniinngg ooff aa NNeeww EErraa””““DDSSAAHHRRCC SSttaaffff AAddddiittiioonnss,, tthhee BBeeggiinnnniinngg ooff aa NNeeww EErraa””

The DSAHRC is very pleased to announce the expansion of the Staff with the brand-new additions of anEducation Coordinator and an Events Coordinator.

Namita Modasra has joined the Staff as the DSAHRC Education Coordinator. Hiring an Education Coordinatorhas been a dream for the DSAHRC ever since its inception and will be a critical addition to help our children have an

appropriate, successful, and meaningful education experience. Namita has beenactively involved with Aim High and the DSAHRC for many years. Her initial involvement was with social activities, but over the years her focus was increasinglyon education. Namita has counseled numerous families, organized many educationseminars, and co-organized the Reading Tutorial program. She has developed anin-depth knowledge of the spectrum of education issues and has developed a wideregional network of connections and partnerships. Namita’s career objectives, in herown words, are: “to support and strengthen other parents’ abilities to understand andnavigate our complex education system and effectively advocate for their children

and obtain appropriate education and community supports.” Namita will be at the office Monday through Thursday from9:30 am to 1:30pm and will have some limited evening hours. Namita can be reached at the office at 438-1113 or by e-mail at [email protected]. Welcome, Namita, in your new and exciting role!

Julie Koenig has joined the DSAHRC as the Events Coordinator. Julie may be new to the DSAHRC, but she certainly is not new to organizing major fundraisers. She has an impressive resume and the DSAHRC is very fortunate towelcome her to our organization. Julie will be working closely with the Events Committee organizing the Buddy Walk andwith the Fundraising Committee organizing the first Annual DSAHRC Gala. You can contact Julie at the office at 438-1113or by e-mail at [email protected]. We are very happy to welcome Julie to our DSAHRC family!

This is truly an exciting time for the DSAHRC. We are very fortunate to have generous community support toallow for these staff additions. It places us in a position to more fully support people with Down syndrome, their families, and the professionals involved in their care. The excitement is also generated by the upcoming annual Beyond

Our Wildest Dreams conference on Saturday, April 24th. The program for this year’s Conference is simply amazingwith superb keynote speakers, exciting break-out sessions, and amazing programs for both the self-advocates and the siblings. There is just NO WAY in the world anyone could possibly miss this Conference (or for that matter, the Family

Dance on Friday, April 23rd). Did I mention before that you can still buy raffle tickets and/or volunteer to sell raffle tickets? First prize is $15,000! Join in the excitement!

PPAAGGEE 44 NNEEWWSS AANNDD NNOOTTEESS MMAARRCCHH//AAPPRRIILL 22001100

“...places us in a position to more fully support

people with Down syndrome,their families, and the

professionals involved in their care.

AA NNeeww SSuummmmeerr OOppppoorrttuunniittyy OOppeennss iinn tthhee NNoorrtthheeaassttAA NNeeww SSuummmmeerr OOppppoorrttuunniittyy OOppeennss iinn tthhee NNoorrtthheeaassttThe DSAHRC recently received this information about a new respite program in Canada...

Spring is here and it’s not too early to investigate summer vacation options. Vacations are for rest and relaxationOR learning and experiencing new things. A new active living option for summer vacations has opened in Quinte West nearBelleville, Ontario, about two hours east of Toronto. It’s a working farm that has professional staff and welcomes guests(adults from 18-50 years) with developmental disabilities, including Down syndrome, high functioning autism and aspergers. It’s a new concept! “RESPITALITY” – country hospitality for respite guests. We are a private respite destination. We are ahistoric bicentennial property that used to be an apiary but now we raise meat goats, meat chicken, egg laying hens, andcattle. Overseeing all this is Farmer George and Sami, our guard donkey. The programming isdesigned for multiple choices and fun. Water activities, off-site trips, games, barn chores and animal care, gardening, and camping are all aspects of our new learning series.

Heartfit Respite accepts only eight guests a week. For more information visit their websiteat www.heartfitrespite.com. Contact Cristina Milner, Director, Heartfit Respite Inc., at 613-968-2428 or [email protected]

“You are offering an incredible opportunity here to families touched bydevelopmental disability. I can’t think of a more ideal setting for ourloved one. Once you get an established clientele and they go back yearafter year, you will be set. Your farm will be a model for many others, I hope, in the future.” - Donna Hiscott, mother of a Heartfit Respite guest

Page 5: News & Notes - March/April 2010

SSeellff--AAddvvooccaatteess OOnn SSnnoowwsshhooeess aanndd OOnn aa CCoolllleeggee CCaammppuuss!!SSeellff--AAddvvooccaatteess OOnn SSnnoowwsshhooeess aanndd OOnn aa CCoolllleeggee CCaammppuuss!!Happy Spring!

Self-Advocates beat the winter blahs on February 7, 2010, at Five RiversEnvironmental Center with a marvelous winter Snowshoe hike and tour. Although there wasn’t too much snow outside at the time, it didn’t seem to make any difference – a greattime was had by all! Along with our tour guide, we practiced walking and falling in

snowshoes, as well as reading the signs of life in the snow and woodsaround us. Our walk was followed by a lovely reception with hot chocolate,snacks and dinner by the woodstove at the Velvis home. Thank you sovery much for your gracious hospitality, Marietta, Harm and Mariah!!

Twelve self-advocates have been able to participate in a series of classes at the College of St. Rose (CSR) under the direction of Dr. TerriWard and her students. On four Friday evenings in February and March,from 6:30-8:30 pm, classes were offered on the topics of dorm and apartment living, budgeting, menu planning and personal safety. Collegestudents Brianna, Maria, Erin and Lisa did a marvelous job! What a fantastic

opportunity for our self-advocates!! More classes will follow this April on Computer Technology and Social Networking.These sets of classes will be repeated in the Fall of this year. Look for information to follow!

Other news: Look for a bowling party on April 17th at Spare Time Bowling in Latham (see below), and classes onpersonal fitness/exercise coming up this spring!! Hey! Are you at least 16 years of age? Come join our Self-AdvocatesGroup!! Contact Rose at [email protected] or at 453-8813 to learn more.

Best to you all, Rose Hargrave, Brie Nobis and Patrick Morgan, Self-Advocates Co-Chairs

MMAARRCCHH//AAPPRRIILL 22001100 NNEEWWSS AANNDD NNOOTTEESS PPAAGGEE 55

Campussecurity and

police talkabout safety

with self-advocates at

the Collegeof St. Rose

The Self-Advocates Group, along with some family and friends, had a great time snowshoeing and/or

hiking at Five Rivers Environmental Center in February. They even found some snow for their photo!

AA BBoowwlliinngg PPaarrttyy iiss OOuurr NNeexxtt SSeellff--AAddvvooccaatteess EEvveenntt!!AA BBoowwlliinngg PPaarrttyy iiss OOuurr NNeexxtt SSeellff--AAddvvooccaatteess EEvveenntt!!HHeeyy SSeellff--AAddvvooccaatteess!! CCoommee jjooiinn tthhee ffuunn!!!!HHeeyy SSeellff--AAddvvooccaatteess!! CCoommee jjooiinn tthhee ffuunn!!!!

Springtime Bowling at Spare Time Bowling and Fun Center in Latham on Saturday, April 17th from 12:30-2:30 pm.

Pizza, soda, two games and bowling shoes included for $5 per person.

RSVP to Rose by April 14th – [email protected] – See you there!!!

Rose, Brie and Patrick, Co-chairs of the Self-Advocates Group

Page 6: News & Notes - March/April 2010

PPAAGGEE 66 NNEEWWSS AANNDD NNOOTTEESS MMAARRCCHH//AAPPRRIILL 22001100

LLLLIITTEERRAACCYYIITTEERRAACCYY CCCCAAMMPPAAMMPP AATTAATT TTHHEETTHHEECCCCOOLLLLEEGGEEOOLLLLEEGGEE OOFFOOFF SSSSTTTT.. RR.. RROOSSEEOOSSEE

The 2nd Annual Summer Camp at the College of St. Rose was held during themonths of June and July. Many of the participants were from the Aim High community.The program was overseen by Dr. Terri Ward and was designed to give individuals ahead start on engaging with books that enhance their learning. Participants were taughtby certified teachers seeking their masters degrees in special education. The theme ofthe 2009 camp was studying how to make ethical choices. The students were brokeninto three age groups, each studying one of three books: To Kill A Mockingbird, TouchingSpirit Bear, and My Brother Sam is Dead. Using a variety of reading techniques, including The 4-Blocks, reader’s theatre, use of PowerPoint accessible books, and mental imaging, students were able to investigate history and keep a journal of their thoughts regarding the book. The six-session program culminated in a live performance where the students acted out a scene from their books. We lookforward to more exciting Summer Camps at the College of St. Rose!

TTTTHHEEHHEE 22000099 AA22000099 AANNNNUUAALLNNNNUUAALL RRRREEVVIIEEWWEEVVIIEEWW

TThhee DDSSAAHHRRCC hhaaddTThhee DDSSAAHHRRCC hhaaddaa bbuussyy yyeeaarr......aa bbuussyy yyeeaarr......

The 2009 Beyond Our

Wildest Dreams featured the

whimsical theme of the

Wizard of Oz

The Aim High Scholarship

was awarded in 2009 to Erin

Montrello, pictured here with

schoolmate Maggie Rowell

The 4th Annual Capital

District Bike Camp produced

many happy campers and

volunteers!

FFooccuuss oonn......FFooccuuss oonn......

Claire Connally and

Maddie Swart act out a

scene from “My Brother

Sam is Dead”

The DSAHRC office space served not only as a

meeting place, but it also hosted playgroups,

parties, and even a yoga session in 2009!

Page 7: News & Notes - March/April 2010

MMAARRCCHH//AAPPRRIILL 22001100 NNEEWWSS AANNDD NNOOTTEESS PPAAGGEE 77

DDSSAAHHRRCC FFDDSSAAHHRRCC FFAAMMIILLYYAAMMIILLYY PPPPIICCNNIICCIICCNNIICCThe 4th Annual Down Syndrome Aim High Resource Center Family BBQ

was held on August 22nd at Colonie Town Park. While most of us held our breath just waiting for the rain to begin, wewere quite pleased that there was not a drop of rain to be seen for the entire event!

Fun was had by all of the 200 picnic-goers….the kids enjoyed the BouncyBounce and visits from Dora the Explorer, Clifford the Big Red Dog, Sponge Bob,Barney, Tweety Bird, Mickey and Minnie Mouse and the ever-popular DisneyPrincesses. The entire crowd danced along to the music of DJ Charlie Sims, andenthusiastically sang along with Elvis! The food was delicious and the company wasunbeatable, too!

This event is organized by the Mayhew and Mazzacco families and held annually. The funds raised are donated to the DSAHRC in memory of AshleyMazzacco’s grandfather, Phil Mayhew. This year, over $5,000 was raised! TheDSAHRC says “THANK YOU!” to the Mayhew and Mazzacco families for working so hard to make this event such a blast and for making us part of their family!

This just in - Maria Mayhew reports that the Colonie Town Park, Pavilion 1, hasbeen reserved for the next DSAHRC Family Picnic, so save this date – Saturday, August 21, 2010 – and plan toattend! Elvis promises to be there, too!

aanndd aa vveerryy ggoooodd yyeeaarr!!aanndd aa vveerryy ggoooodd yyeeaarr!!

FFooccuuss oonn......FFooccuuss oonn......

Don and Danielle Baldwin

hang out with Dora the

Explorer at the 2009 Picnic

Team Coco, named after Coco

Connally (far right), was just one of

the many large, colorful groups that

participated in the 2009 Buddy Walk

FFiirrsstt AAnnnnuuaall TT..PP.. GGoollff TToouurrnnaammeennttFFiirrsstt AAnnnnuuaall TT..PP.. GGoollff TToouurrnnaammeennttThe First Annual T.P. Open Golf Tournament was held in September at the

Cedar Lake Golf Club in Clayville, NY, to benefit both the DSAHRC and the Mohawk Valley Down Syndrome Awarenessand Support Group. This tournament was organized by Scott Miller, who lives in Utica. Scott is the uncle of ChristopherMiller, a gentleman with Down syndrome who lives in the Capital District. Scott wanted to do something to raise funds fororganizations that serve individuals who have Down syndrome, and he thought that holding a golf tournament would be agood idea. Amazingly, he put the entire thing together in only five weeks!!! We are so very appreciative to the MillerFamilies for holding this event and raising funds for our organization. We look forward to this year’s tournament!!

A big thank you to the following sponsors of the event:

FFooccuuss oonn......FFooccuuss oonn......

Carbone Hyundai NissanDuffy’s Food Equipment Service & PartsLiberty Travel

Mum FarmTony’s Pizza in ClintonWalmart Supercenter

Jennifer Lang with members of the golf-loving Miller family:

Christopher, Doug, Bob and Scott

Page 8: News & Notes - March/April 2010

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TTTTHHEEHHEE 22000099 AA22000099 AANNNNUUAALLNNNNUUAALL RRRREEVVIIEEWWEEVVIIEEWW CCOONNTTIINNUUEEDDCCOONNTTIINNUUEEDD............

MMMMUURRDDEERRUURRDDEERR MMMMOOSSTTOOSSTT RRRROOYYAALLOOYYAALL

The King of Wurtlevania has been killed and we are all witnesses – it’s up to theDSAHRC audience to figure out whodunit! That was the premise of Murder Most Royal, a fun-filled evening inNovember at the Carondelet Hospitality House in Latham, created just for the DSAHRC. As they entered the hall, guestswere “received” by the Royal Family of the imaginary European country. It didn’t take long to detect some animosityamongst the parents, their offspring and staff who were, in fact, actors from Murder By Design. While dining, the Royalsmingled within the crowd, answering questions and hinting of their true feelings about their nearest and dearest. Manyfolks in the audience, particularly a number of our self-advocates, enjoyed solving the mystery of the murder of the king– it really was an interactive evening of intrigue and delight, as well as a wonderful fundraiser! A big thank you goes toSteve and Diane O’Connor of Murder By Design for so generously donating the proceeds of the evening to the DSAHRC!

FFooccuuss oonn......FFooccuuss oonn......

PatronsV. James AloiseDr. Jack & Vilma FarmanWilliam & Kathy Golderman

SupportersGayle & Peter FarmanFrancis & Judy HelionS & L Building & Development LLC

Jim & Debbie AloiseBarbara Brinkerhoff & Robert AnslowDr. Jack & Vilma FarmanDiane E. LangJames Lang

Marlene McKenna & Jim GreenoughWilliam and Terry Van EveraHarm & Marietta VelvisDavid Yule

AFSCO Fence Supply Company, Inc.Capital District Pediatric

Cardiology Associates

Girvin & Ferlazzo, P.C.Premium Financing SpecialistsRosch General Contractors

Amy BellingerSally EspeyJill & Mark EvanchuckFriends of Assemblyman TediscoGeorge & Teshia GutchellKiddie Car Nursery School, IncKathryn MalinowskiAnne Kuppinger & Daniel Liebert

Alan & Charlene MapesEdmund & Elizabeth MashmannDwight MathusaMichael & Ellin O’MalleyWilliam & Deborah PrimePaul & Karen WajdaDonna & Theodore Ware

Murder By Design Honorary Committee

Murder By Design Ad Space

FriendsThe Royal Family of Wurtlevania, including

the Royal Physician and the Prime Minister,

with some new friends

Requests for Family Services

Categories of Requests in 2009

1600

0

1600

0

Education(570)

Community(775)

Information(235)

Medical (96) Psychiatric/Behavioral(17)

Requests for Professional Svcs.

200920032003 2009

The growing need for

support for families and

professionals, particularly

in the education and

community categories,

has justified the DSAHRC

hiring a new Education

Coordinator.

The goal of the Down Syndrome Aim High Resource Center isto provide parent-to-parent and professional services and support

to individuals with Down syndrome and their families and educating the broader community about Down syndrome.How? Here are just a few of the things that happened

in 2009 to attain that goal...16 Seminars - 3 Professional Presentations - 73 books/other

materials loaned to families from the DSAHRC Library - $4,271disbursed to families through Direct Impact Grants -Sunshine

Baskets sent to 9 families of children who were sick or hospital-ized - activities for Self-Advocates, including the Reading Tutorial

Program, Self-Advocates Conference at Beyond Our WildestDreams Annual Conference, a PowerPoint Program developed by

Self-Advocates for presentations in the community, and dancesand other fun stuff - increasing awareness through events, the

Aiming High Calendar, DSAHRC jewelry, participating in the Schuylerville Turning Point Parade and at the

Saratoga Barnes & Noble’s Heart and Soul Day...For a more complete list, contact the DSAHRC to see

the official Annual Report 2009!

Page 9: News & Notes - March/April 2010

MMAARRCCHH//AAPPRRIILL 22001100 NNEEWWSS AANNDD NNOOTTEESS PPAAGGEE 99

IItt wwaass aa IItt wwaass aa VVEERRYYVVEERRYY ggoooodd yyeeaarr!!ggoooodd yyeeaarr!!

TTTTEEAARRIINNGGEEAARRIINNGG UUUUPPPP TTHHEETTHHEE TTTTUURRFFUURRFF FFFFOORROORR TTTTIIMMOOTTHHYYIIMMOOTTHHYYAANNDDAANNDD HHIISSHHIISS FFRRIIEENNDDSSFFRRIIEENNDDSS WWIITTHHWWIITTHH DDOOWWNNDDOOWWNN SSYYNNDDRROOMMEESSYYNNDDRROOMMEE!!!!

On September 20th, 152 golfers gathered at the Fairways of Halfmoon Golf Course to raise money for the DSAHRC.As has been the case for seven years in a row, the sun was shining and not a cloud was in the sky for the tournament.The proceeds from this event, over $60,000 in 2009 alone, helps fund DSAHRC education projects, including theReading Tutorial Program, which provides one-on-one reading tutorials with certified reading specialists for individuals,ages five and above, who have Down syndrome. The DSAHRC sincerely thanks Bruce Tanski, owner of Fairways,

and the Van Heusen Family for all their hard work and continued dedication to the DSAHRC, as well as the

following individuals and organizations for making this such a great event!

FFooccuuss oonn......FFooccuuss oonn......

Team SponsorsABC Nursery School Allied Building Products Amato FinancialD & N Excavating Fascia FlooringFuccillo Chevrolet HMS Agency Ianniello, Anderson & Reilly Key Bank Lansing EngineeringScale Service SupplyTD BanknorthTironi 1 RealtyWilliam Kirvin Insurance

Prize Table RaffleComfort InnThe Dennis FamilyElite VacuumHealthplexJohn Lucarelli & SonsKinetic DetailingRED-KAP SalesSnyder’s RestaurantBruce TanskiWilliam Kirvin Insurance

$5000Bellevue Builders$3000Decrescente Distributors$2000Stewart’s Corp.Fuccillo Chevy of East Greenbush

Carola, Bagnoli, & TollisenHarold CropseyDagostino Building BlocksMark & Ann DejnozkaCraig Farnsworth

IR ContractingScott and Amy MacCaullKathy MarchioneAlan and Patty ScottSue Singer

Absolute Seamless GuttersAllen’s Snow PlowingBank of BenningtonJohn and Diane BoydellButler Custom CabinetryCapital District Pediatric

CardiologyCapital StorageClifton Park PizzaD’Raymonds Restaurant

Fascia FlooringFirst NiagaraHomestead Funding Corp.Invisible Fence of Northern NYMartin Brothers SealcoatingMcKnickers, LLCOak Brook CommonsScale Service and Supply Co.William Kirvin Insurance

Contest SponsorsClifton Park Glass & Mirrors Jay’s AutoStevens Sealcoating and Pavement Marking

Beverage Cart Sponsor County Waste and Recycling

Tournament SponsorsBellevue BuildersDeCrescente DistributingBruce Tanski

$1000Albany Fire ProtectionAlbany Mechanical ServicesAmato FinancialBA Construction Services, LLCBest Paving and SealcoatingC & S SidingCapital PlumbingClifton Court ApartmentsCommunity Preservation Corp.

D’Agostino Concrete Inc.D & N ExcavatingHalfmoon HeritageHalfmoon Republican ClubIaniello, Anderson, & Reilly, PCKingsley ArmsMarshall and SterlingMcGregor Village ApartmentsTroy Sand & Gravel

$600Jay’s Auto RepairTD Banknorth

$500The Spillane Family CBK of Troy, Ltd.

Corporate Sponsors

Tee Sponsors

Cash Donations

Other

Special Thanks to all the wonderful volunteers, and also to: ALL-U for donating the printing on the Tearing Up the Turf t-shirts; to DaveAshley of Empire Signs & Graphics for the tournament signs; to Scott

Quenneville of Red Kap Sales for the Mobil “Speedpass” Cooler Bags; and toDebbie Pailey, Tammy Selva, Kris Poole, and Jonna Foster for their help in

recruiting tournament sponsors and donations!

ttoo tthhee ssuuppppoorrtt tthhee DDSSAAHHRRCC rreecceeiivveess ffrroomm oouurr ccoommmmuunniittyy,, aass nnootteeddttoo tthhee ssuuppppoorrtt tthhee DDSSAAHHRRCC rreecceeiivveess ffrroomm oouurr ccoommmmuunniittyy,, aass nnootteeddiinn tthheessee ppaaggeess,, oouurr oorrggaanniizzaattiioonn iiss aabbllee ttoo ggiivvee bbaacckk ttoo oouurr iinn tthheessee ppaaggeess,, oouurr oorrggaanniizzaattiioonn iiss aabbllee ttoo ggiivvee bbaacckk ttoo oouurr ccoommmmuunniittyy aass wweellll.. EEdduuccaattiioonn,, aawwaarreenneessss,, aanndd ssoocciiaall eevveennttss,, oouurrccoommmmuunniittyy aass wweellll.. EEdduuccaattiioonn,, aawwaarreenneessss,, aanndd ssoocciiaall eevveennttss,, oouurr

wweebbssiittee,, vvaarriioouuss ppuubblliiccaattiioonnss,, aanndd tthhee pprrooffeessssiioonnaall,, ccoommppaassssiioonnaattee vvooiicceess aannsswweerriinngg tthheewweebbssiittee,, vvaarriioouuss ppuubblliiccaattiioonnss,, aanndd tthhee pprrooffeessssiioonnaall,, ccoommppaassssiioonnaattee vvooiicceess aannsswweerriinngg tthheepphhoonnee mmaaddee ffoorr aa bbuussyy aanndd ssuucccceessssffuull 22000099..pphhoonnee mmaaddee ffoorr aa bbuussyy aanndd ssuucccceessssffuull 22000099..

TThhaannkkssTThhaannkkss

Page 10: News & Notes - March/April 2010

PPAAGGEE 1100 NNEEWWSS AANNDD NNOOTTEESS MMAARRCCHH//AAPPRRIILL 22001100

TThhaannkk YYoouu,, TThhaannkk YYoouu,, CCoorrppoorraattee SSppoonnssoorrss,, ffoorrCCoorrppoorraattee SSppoonnssoorrss,, ffoorr

SSuuppppoorrttiinngg tthhee DDSSAAHHRRCC!!SSuuppppoorrttiinngg tthhee DDSSAAHHRRCC!!

SchoolhouseRoad PediatricAssociates, Inc.81 Schoolhouse Rd., Albany, NY

(518) 456-1211

TTHHAANNKK YYOOUU!!TTHHAANNKK YYOOUU!!A sincere thank you to the following individuals, families, and organizations for your generous donations. All gifts are greatly appreciated and assist the DSAHRC in achieving its mission.

of Northeastern New York, LLP35 Hackett Blvd., Albany, NY 12208(518) 262-5575

Keybank Foundation Matching Gift Program

Cindy BarfordWells Fargo Community Support Campaign

United Way campaign from Mary Alice Niday

In Honor of Danielle Baldwin

Ken Udle & Ruth Saunders

In Memory of Harry Baldwin

Ken Udle & Ruth Saunders

In Honor of Ava Charbonneau

Nora Bouchard

In Honor of Vicki Charbonneau

Association Development Group, Inc.

In Memory of Steven Signore

Anna Signore

In Honor of Jack Hughston Waring

Patricia Rodenhausen Kay

Tori BauerScarlett Duncan

Daniel EsperPeter & Christina GrenisRenee & Peter Hallock

Iron Worker’s Local Union No. 12

Marilyn Lenkowsky/ Billy SpillmanCristina Muranyvarimilner

Jenny & John O’NeillStephen Principe

Chandler & Carol Rowell

Frederick & Joyce SchorkMichael Stammel

Brian & Carolyn TemperineKandi & Daniel Terry

Harm & Marietta Velvis K & I Young

General Donations

Stewart’s Foundation Holiday Match Program

SSpprriinngg DDSSAAHHRRCC SSeemmiinnaarrss SSpprriinngg DDSSAAHHRRCC SSeemmiinnaarrss The Preparing for Your Child’s Annual Review series with presenter Julie Keegan, Esq. of the Parent Network of the

Capital Region concludes this spring with two seminars at the Down Syndrome Aim High Resource Center.

The Scoop on Special Ed Services & Extended School Year Meaningfully Participating in CSE Meetings

Thursday, April 15, 6:30-8:30 pm – RSVP by April 8 Thursday, April 22, 6:30-8:30 pm – RSVP by April 15

Special Care Planning: What Happens When....

Wednesday, May 12 – 6-8 pm – RSVP by May 5presented by William Van Evera, CLU, ChFC, and Tara Ann Pleat, Esq.

Topics to be covered include: The Special Care Planning Process • Basic Estate Planning Tools • Special Needs Trusts• Planning Mistakes We've Seen • Guardianships • Letters of Intent

Visit the DSAHRC website formore details on these seminars!

Page 11: News & Notes - March/April 2010

MMAARRCCHH//AAPPRRIILL 22001100 NNEEWWSS AANNDD NNOOTTEESS PPAAGGEE 1111

BBOOAARRDD OOFF DDIIRREECCTTOORRSSPresident . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Harm VelvisVice-President . . . . . . . . . . . . . . . . . . . . . . .Bill Van EveraSecretary . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Mary GraceTreasurer . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Dave YuleAdministrative/Membership Chair . . . . . . . . . .Mary GraceConference/Seminar Chair . . . . . . . . . . . . . .Gayle FarmanEducation Chairs . . . . . . . . . . . . . . . . . .Virginia MacPhee

. . . . . . . . . . . . . . . . . . .Namita ModasraEvents Chair . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Fundraising Chairs . . . . . . . . . . . . . . . . .Brian Temperine

. . . . . . . . . . . . . . . . . . .Bill Van Evera . . . . . . . . . . . . . . . . . . .Eddie Affinito

Legislative/PR Chair . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Publications Chair . . . . . . . . . . . . . . . . . . . .Brian CollierSelf-Advocates Chairs . . . . . . . . . . . . . . . .Patrick Morgan

. . . . . . . . . . . . . . . .Brianne Nobis . . . . . . . . . . . . . . .Rose Hargrave

Currently all Officers and Board members, with one exception,either have a family member with Down syndrome or they themselves have Down syndrome. The ages of our childrenrange from infancy through adult years. Our Board membershave had various life experiences. No two of us have chosenthe same path or made the same decisions. Our diverse experiences help us as we plan programs and activities for theDSAHRC community.

Board meetings are held at 6:30 pm on the first Monday ofeach month at the DSAHRC office, 1 Marcus Blvd., Suite 105,in Albany. Everyone is welcome to attend – please call aheadto make sure the meeting is taking place as scheduled.

OOUUTTRREEAACCHH PPRROOGGRRAAMMSSDo you know someone with Down syndrome who is sick or hospitalized and

could use some cheer? The Sunshine Committee provides baskets of goodies to help during difficult times. Would you like information about

Direct Impact Grants? Need to talk to a New Parent Contact? Have a question only a grandparent can answer?

Then please contact the DSAHRC at (518) 438-1113 or at [email protected] to learnmore about these and the many other programs we offer to assist families.

DDSSAAHHRRCC OOFFFFIICCEE IINNFFOOWe’re open Monday-Friday, 8:00-4:00, but sometimes our work takes us

out of the office – kindly call before coming! Other hours available by appointment – please come see us!

1 Marcus Boulevard, Suite 105, Albany, NY 12205 Phone: (518) 438-1113; Fax: (518) 438-2716

Website: www.dsahrc.org

Executive Director: Diane E. Lang, [email protected] Assistant: Debbie Baldwin,[email protected]

Events Coordinator: Julie Koenig, [email protected] Coordinator: Namita Modasra, [email protected]

Publications: Carol Rowell, [email protected] Development Coordinator: Marietta Schork Velvis, [email protected]

President of the Board of Directors: Harm Velvis, [email protected]

The DSAHRC office space is available for meetings, social events, etc.and is conveniently located off Wolf Road, near the Holiday Inn.

BBee aa PPaarrtt ooff tthhee DDSSAAHHRRCCBBee aa PPaarrtt ooff tthhee DDSSAAHHRRCC -- UUssee tthhiiss ffoorrmm ttoo jjooiinn oorr ttoo rreenneeww yyoouurr mmeemmbbeerrsshhiipp ttooddaayy!!

NAME: PHONE:

STREET: APT #:

CITY: STATE: ZIP:

CHILD’S NAME: BIRTH DATE: MALE FEMALEE-MAIL ADDRESS:CATEGORY (circle one): Parent Grandparent Family Friend Newsletter Exchange Self-Advocate

Professional Affiliation

Would you like a DSAHRC staff member to contact you?In what format would you like to receive News & Notes? Electronic Paper Both Versions

ANNUAL DUES: Family – $25.00, Self-Advocates – $10.00I am proud to enclose an additional tax-deductible donation of $

Amount Enclosed: $

I have enclosed a check made payable to DSAHRC

Please charge my credit card (circle one) Visa MC AMEX DISCCard # Exp. Date Sec #

Please mail to: DSAHRC, 1 Marcus Blvd., Suite 105, Albany, NY 12205 TThhaannkk yyoouu!!TThhaannkk yyoouu!!

Please contact me about volunteering with the following committees:

Administrative/MembershipConferenceEducationEventsFundraisingLegislative/Public RelationsPublications/CalendarSelf-AdvocatesOther

New Phoneand FaxNumbers!

Page 12: News & Notes - March/April 2010

Non-Profit Org.

US POSTAGEPAID

Permit No. 759

Albany, NY

MOVING? Don’t miss an issue of News and Notes due to an address change! The Post Office does not forward the newsletter and it charges the DSAHRC for each undeliverable newsletter, so please call, write, or e-mail us to update your information – thanks!

Or Current Resident

1 Marcus Blvd., Suite 105Albany, NY 12205

SSSSLLAATTEELLAATTEE OOFFOOFF CCCCAANNDDIIDDAATTEESSAANNDDIIDDAATTEESS FFOORRFFOORR TTHHEETTHHEE DDSSAAHHRRCCDDSSAAHHRRCCBBBBOOAARRDDOOAARRDD OOFFOOFF DDDDIIRREECCTTOORRSSIIRREECCTTOORRSS FFOORRFFOORR 22001100--2200111122001100--22001111

The General Membership Meeting will take place on Monday, April 26, 2010, 6:30 pm, at the Down Syndrome Aim High Resource Center (DSAHRC), 1 Marcus Blvd., Albany, NY, at which time

members in good standing of the DSAHRC will elect the Officers and Board of Directors.

President: Harm VelvisVice-President: Gayle Farman

Treasurer: Joyce SankowskiSecretary: Mary Grace

Lisa ConnallyRose HargraveVirginia MacPhee

Mike MassaroniPatrick Morgan

Doug MillerBrianne Nobis

Brian TemperineKimberly VernerDave Yule

CCoommmmiitttteeeess aarree BBuussyy WWoorrkkiinngg oonn OOuurr FFaallll EEvveennttss -- CCaann YYoouu HHeellpp??CCoommmmiitttteeeess aarree BBuussyy WWoorrkkiinngg oonn OOuurr FFaallll EEvveennttss -- CCaann YYoouu HHeellpp??The DSAHRC Events Committee and Fundraising Committee are currently putting together

our annual Buddy Walk and – new this year! – our first annual Gala, both taking place in October, Down Syndrome Awareness Month.

Whether you choose to help over the next several months or can only put in a few hours the day of theevent, your assistance will be much appreciated. Please contact our new Events Coordinator, Julie

Koenig, at 438-1113 or [email protected], the Buddy Walk Chairperson, Lisa Connally, at [email protected], or the Gala Chairperson, Bill Van Evera, at 370-1712,

and let them know how you’d like to get involved.

October promises to be a busy but very fun time for our organization – won’t you please be part of it?

OOFFFFIICCEERRSS::OOFFFFIICCEERRSS::

DDIIRREECCTTOORRSS::DDIIRREECCTTOORRSS::

All DSAHRC members are welcomeand encouraged to attend!

The By-laws require the membership be notified of any proposed amendments to the By-laws. The followingamendment to the By-laws is proposed and will be voted on at the General Membership Meeting: Article III,Section 5: CURRENTLY: Officers shall be eligible to serve three (3) consecutive terms of one (1) year. PRO-

POSED CHANGE (AMENDMENT): Officers shall be eligible to serve five (5) consecutive terms of one (1) year.


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