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Fall 2009 Issue of News & Notes Newsletter. Published by the Down Syndrome Aim High Resource Center
Citation preview
NNNNEEWWEEWW SSSS aannaann dddd NNNNOOTTEESSOOTTEESSa publication of
DDoowwnn SSyynnddrroommeeDDoowwnn SSyynnddrroommeeAAiimm HHiigghh RReessoouurrccee CCeenntteerr,, IInncc..AAiimm HHiigghh RReessoouurrccee CCeenntteerr,, IInncc..
Providing parent-to-parent and professional services and support to individuals with Downsyndrome and their families and educating the broader community about Down syndrome.
VVOOLLUUMMEE 2277,, NNUUMMBBEERR 44 �� FFAALLLL 22000099
BBuuddddyy WWaallkkBBuuddddyy WWaallkk22000099!!22000099!!
TThheerree wweerree BBaalllloooonnss......TThheerree wweerree BBaalllloooonnss......
BBaannnneerrss......BBaannnneerrss......
aanndd BBaabbiieess!!aanndd BBaabbiieess!!
From top: MattCalautti sportssome fancy head-gear; the crowdwinds its wayaround IroquoisLake in CentralPark; Brandy Swift relaxes with herdaughter Ameilia;Full page: Sparkles,the Stilt-WalkingJuggler
TTTTHHEERREEHHEERREE ’’’’SSSS MMUUCCHHMMUUCCHH MMOORREEMMOORREEIINNIINN TTHHIISSTTHHIISS SSPPEECCIIAALLSSPPEECCIIAALL IISSSSUUEEIISSSSUUEEOOFFOOFF NNNNEEWWSSEEWWSS AANNDDAANNDD NNNNOOTTEESSOOTTEESS !!!!
PPAAGGEE 22 NNEEWWSS AANNDD NNOOTTEESS FFAALLLL 22000099
Statement of Policy and DisclaimerThis newsletter reports items of interest relating to Down syndrome and will provide a forumfor others. The Down Syndrome Aim High Resource Center (DSAHRC) does not promoteor 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 asappropriate and in accord with established editorial practice.
Printing of ArticlesWe welcome articles from parents, individuals with Down syndrome, professionals, and otherinterested 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 sendus a copy. 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, editor@dsahrc.org
Publications Committee Chair: Brian Collier, (518) 439-5964
Staff: Diane E. Lang, Jody Nicholls Murphy,Ann Nobis, Brianne Nobis
Printer: Ludani Printing, Inc.
Several weeks have now come and gone since the Capital Region Buddy
Walk took place. Going over the photographs and articles, I have had the greatopportunity to slowly process what took place on that gorgeous fall day. At thetime, there was a veritable feast for the senses – friends, music, food, speeches,colorful shirts and balloons, voices of babies and laughing children, the walkitself – all to be digested in just a few marvelous hours. One of the goals of theBuddy Walk Chair, Kandi Terry, was to involve more of the DSAHRC communityin the production stages. The excitement of the day, but also the efforts thatwent into it ahead of time, are part of the fun you’ll get as you read this specialissue of News and Notes. Enjoy!
Here’s hoping you’ll all be able to slow down and enjoy the the next severalhectic, but magical weeks. Happy, healthy holidays everyone!
BBuuddddyy WWaallkk BBuuddddyy WWaallkk BBBBaalllloooonnss,, BBaannnneerrss,,aalllloooonnss,, BBaannnneerrss,,BBaabbiieess......aanndd mmuucchh,, mmuucchh mmoorree!!BBaabbiieess......aanndd mmuucchh,, mmuucchh mmoorree!!--ffrroomm tthhee ddeesskk ooff tthhee EEddiittoorr--ffrroomm tthhee ddeesskk ooff tthhee EEddiittoorr
NNNNEEWWEEWW SSSS aannaann dddd NNNNOOTTEESSOOTTEESS
Upcoming Events............................... 3
President’s Message..........................4Triple Play Families.............................4DS Awareness Month.........................5Words That Walk Winners...............6-7
Buddy Walk 2009!.........................8-11
Conference 2010 Update..................12
Aiming High 2010 Calendar..............12
Dietary Supplement Study................13
Direct Impact Grant Update..............13
Thank You!........................................14Family Holiday Party.........Back Cover
IINNSSIIDDEE TTHHIISS IISSSSUUEEIINNSSIIDDEE TTHHIISS IISSSSUUEE
Sparkles the Stilt-WalkingJuggler makes a new friend
AA SSppeecciiaall TThhaannkkss......AA SSppeecciiaall TThhaannkkss......to the official Buddy Walk photographer, Lacey Stratton, and toDSAHRC members Juergen Klingenberg, Rich Dzintars, Vicki
Charbonneau, Lisa Connally, Erin Massaroni, and Jill Squires forproviding this editor with such great pictures from the event!
NNeeww ffeeaattuurree iinn uuppccoommiinngg NNeewwssNNeeww ffeeaattuurree iinn uuppccoommiinngg NNeewwss aannddaanndd NNootteess!!NNootteess!!Legislative issues and medical developments that may have an impacton individuals with Down syndrome are two areas in which we’d like tokeep our readers better informed. We also feel we can never give you
enough information on education! In an effort to get more of this kind ofnews to you, we’ll be featuring an internet website or two that we’vefound to be helpful, starting with the next issue of News and Notes.
Do you know of a website that’s especially informative? Please share!
FFAALLLL 22000099 NNEEWWSS AANNDD NNOOTTEESS PPAAGGEE 33
DSAHRC BOARD MEETING – Monday, December 7 – 6:30 pm – Everyone’s welcome to attend – come andfind out what’s next for the DSAHRC!
DSAHRC FAMILY HOLIDAY PARTY – Tuesday, December 8 –
6:00 pm – Fun at the TreePaad Fun Center! See back coverto learn more. Ho! Ho! Hope to see you there!
DSAHRC SEMINAR – Thursday, December 10 – 6:30 pm –
Diane Woodward, Director of Transition Services at Wildwood
School, will present Transition Planning. Contact NamitaModasra at nmodasra@dsahrc.org for details.
THE DAD’S PLACE AT PARENT-TO-PARENT – Monday,
December 14 – 6-8 pm – Support for dads and other male relatives of people with special needs. Holiday party withcrafts for dads and kids! Contact Jim Swart at 381-4350 orjmswart1@verizon.net for more information.
DSAHRC BOARD MEETING – Monday, January 4 – 6:30 pm
– Open to everyone – Bring your ideas and learn more aboutyour organization!
SSaavvee tthheessee DDaatteess iinn 22001100!!SSaavvee tthheessee DDaatteess iinn 22001100!!
Friday, April 23rd and Saturday, April 24th, at the HolidayInn in Albany – Annual Family Dance followed the next day bythe DSAHRC’s “Beyond Our Wildest Dreams!” Conference
Friday, October 22 at the Canfield Casino in SaratogaSprings – DSAHRC Gala!
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 ofthe month in various locations. Contact person: Kirin Buckley at kirinqilin@gmail.com.
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 pcjoni@localnet.com.
Loving Up the Downs (LUDS) – Parent-driven support network in the Oneonta area, currently servingOtsego, Chenango, and Delaware counties. Contact person: Lisa Depperman at (607) 433-6260.
December 1st is the deadline for the next issue of News and Notes. Please contact Carol Rowell at theDSAHRC at (518) 438-1113 or at editor@dsahrc.org for information on submitting items. Thanks!
Unless otherwise stated, all activities take place at the DSAHRC office, 1 Marcus Blvd., Suite 105, (just offWolf Road near the Holiday Inn). Look for listings of play groups and support meetings in box below!!
WWWWEEAARRIINNEEAARRIINN’’ ’’ OOFFOOFF TTHHEETTHHEE RRRREEDDEEDD!!!!TThhee SSeellff--AAddvvooccaatteess aarreeTThhee SSeellff--AAddvvooccaatteess aarree
HHaavviinngg aa HHoolliiddaayy DDaannccee!!HHaavviinngg aa HHoolliiddaayy DDaannccee!!FFrriiddaayy FFrriiddaayy ���� DDeecceemmbbeerr 1188 DDeecceemmbbeerr 1188 ���� 66--99 ppmm66--99 ppmmAAllbbaannyy--SShhaakkeerr RRooaadd FFiirreehhoouusseeAAllbbaannyy--SShhaakkeerr RRooaadd FFiirreehhoouussee
-- ffoorr aaggeess 1133 aanndd uupp --
Hang out with friends and dance to the
great sounds of DJ Charlie Sims!
Pizza, salad, drinks and dessert will
be provided
Please bring a canned food item
for the food pantry!
RSVP by contacting Rose Hargrave at
453-8813 or rosehargrave.nycap.rr.com
by December 14th
HHooppee ttoo sseeee yyoouu tthheerree!!HHooppee ttoo sseeee yyoouu tthheerree!!
FFAALLLL 22000099 NNEEWWSS AANNDD NNOOTTEESS PPAAGGEE 33
AA MMeessssaaggee FFrroomm tthhee PPrreessiiddeenntt,, HHaarrmm VVeellvviiss......AA MMeessssaaggee FFrroomm tthhee PPrreessiiddeenntt,, HHaarrmm VVeellvviiss......““22000099 CCaappiittaall RReeggiioonn BBuuddddyy WWaallkk””““22000099 CCaappiittaall RReeggiioonn BBuuddddyy WWaallkk””
The 2009 Capital Region Buddy Walk was fantastic and an event to remember. Well organized, wellattended, and filled with positive energy and fun. The success of the event can be credited to Kandi Terry, theEvent Committee, and all the volunteers. There were so many quality components to the event: the Words that Walk writing campaign, the inspirationalwords from Brie Nobis, congressman Paul Tonko, and NY Senator Hugh Farley,the singing voice of Rose Hargrave, the Pledge of Allegiance from Patrick
Morgan, the complete line-up of entertainment, the beautiful walk around thelake, the food and drinks, the community support, the teams and, of course, theperfect weather. The attendance, estimated at around 800 participants, was larger than ever before. There was magic in the air. Everyone was involved, connecting with old friends and meeting new friends. There was a lot of interaction between the many new families and families with more years of experience under their belts. There was a constant exchange of ideas and ofmutual support. The kids did not get tired of dancing. The positive energy thatcould be felt throughout the event sent a strong message to the community at theevent, in the Daily Gazette article, and on TV and radio stations around theregion. For the first time our local Buddy Walk served as a fundraiser and theparticipants came through big time raising around $20,000. In short, the bestBuddy Walk ever (and I know we have had many great Buddy Walks before),meeting all its goals of supporting individuals and families, raising awareness inthe community, portraying a positive image of people with Down syndrome, andraising money. Thank you so much Kandi. Thank you volunteers, sponsors,
and participants.
PPAAGGEE 44 NNEEWWSS AANNDD NNOOTTEESS FFAALLLL 22000099
Buddy Walk Chair KandiTerry with her husband,
Dan, and son Nathan
TThhoouugghhttss ooff aa VVeerryy PPrroouudd GGrraannddmmaa::TThhoouugghhttss ooff aa VVeerryy PPrroouudd GGrraannddmmaa::Our darling, Anna Callie, is now 6-1/2 months old.
Whatever joy the initial diagnosis might have taken awayhas been replaced by a vibrant, loving and absolutely beautiful little girl.Watching her grow and thrive often takes my breath away. Her smilesand giggles make my day. Here’s some photos to show you what I mean.
Love,Anne-Marie Seery
Right: Proud grandma Anne-MarieSeery with her granddaughter
TTrriippllee PPllaayy GGrroouupp CCoonnttiinnuueess ttoo GGrrooww!!TTrriippllee PPllaayy GGrroouupp CCoonnttiinnuueess ttoo GGrrooww!!Kirin Buckley reports that Triple Play, a social group for parents of infants, toddlers, and
pre-schoolers who have Down syndrome, is up to 30 families! This very active group has decided to put together a directory of participating families which will include contact
information, the school district in which they live, and experiences they’ve had (for instance, medical, daycare, or sibling issues) that they’d be willing to discuss. Questionnaires have been mailed out – if you’d like to be part of this great project, pleasereturn yours by November 30th. Kirinhopes to have these available to TriplePlay families by the end of the year.
aaaanndd ssppeeaakkiinngg ooff oouurr nndd ssppeeaakkiinngg ooff oouurr TTrriippllee PPllaayy ffaammiilliieess......TTrriippllee PPllaayy ffaammiilliieess......
EmmieLautenschlager
says, “I’m going tobe in the Triple PlayFamily Directory –
why not join me?”
Left: AnnaCallie withher mom anddad, SheilaSeery andVince Romeo
DDDDOOWWNNOOWWNN SSSSYYNNDDRROOMMEEYYNNDDRROOMMEE AAAAWWAARREENNEESSSSWWAARREENNEESSSS MMMMOONNTTHHOONNTTHH 22000099......22000099......ggrroouuppss aanndd ffaammiilliieess ppaarrttiicciippaatteedd iinn aa nnuummbbeerr ooff wwaayyss......ggrroouuppss aanndd ffaammiilliieess ppaarrttiicciippaatteedd iinn aa nnuummbbeerr ooff wwaayyss......
FFAALLLL 22000099 NNEEWWSS AANNDD NNOOTTEESS PPAAGGEE 55
TTTTHHEEHHEE SSSSEELLFFEELLFF--AA--AADDVVOOCCAATTEESSDDVVOOCCAATTEESS GGGGRROOUUPPRROOUUPP ggaatthheerreedd oonneeggaatthheerreedd oonneeSSaattuurrddaayy mmoorrnniinngg aatt tthhee HHaarrggrraavvee hhoommee ttooSSaattuurrddaayy mmoorrnniinngg aatt tthhee HHaarrggrraavvee hhoommee ttoottiiee--ddyyee tt--sshhiirrttss ffoorr tthhee mmaannyy vvoolluunntteeeerrss wwhhoottiiee--ddyyee tt--sshhiirrttss ffoorr tthhee mmaannyy vvoolluunntteeeerrss wwhhoowwoouulldd bbee wwoorrkkiinngg aatt tthhee BBuuddddyy WWaallkk..wwoouulldd bbee wwoorrkkiinngg aatt tthhee BBuuddddyy WWaallkk..
Maggie Rowell and Gayle Farman prepare a shirt for tie-dyeing, as Billy Spillman
works at another “paint station”.
TTTTHHEEHHEE SSSSIIBBLLIINNIIBBLLIINNGGGGSSSS GGGGRROOUUPPRROOUUPP
ssttuuffffeedd hhuunnddrreeddss ooff ssttuuffffeedd hhuunnddrreeddss ooff ssppoorrttppaacckkss ffoorr BBuuddddyyssppoorrttppaacckkss ffoorr BBuuddddyyWWaallkk aatttteennddeeeess wwhhoo rraaiisseeddWWaallkk aatttteennddeeeess wwhhoo rraaiisseeddffuunnddss ffoorr tthhee DDSSAAHHRRCC..ffuunnddss ffoorr tthhee DDSSAAHHRRCC..
Above: Sibs included Kelsey Wein, DevinMahoney, Luke Temperine, Genny Rowell,
Ryan Mahoney, Claire Connally, Eunu Song,Dan Lang, Justine Aloise, and Greg Lang;
right: James Yooha Song helped!
CCCCOONNNNAALLLLYYOONNNNAALLLLYY FFFFAAMMIILLYYAAMMIILLYY SSSSPPRREEAADDSSPPRREEAADDSS TTHHEETTHHEE WWWWOORRDDOORRDDOctober 12, 2008 – that’s the day we began spreading
awareness about Down syndrome. It’s the day that Coco wasborn and the day that our family set out on a new journey.Spreading awareness about Down syndrome is a family effortthat is embraced by all, and an effort that we will continue.
We quickly started educating and preparing our two oldest children, Claire, age 11,and Owen, age 9, to become advocates for their sister, but more importantly for all individuals with disabilities. In celebration of Down Syndrome Awareness Month, wewanted to do something in school that would help promote awareness. We came upwith the idea to make Coco’s Buddy Bracelets. The bracelets are made from threestrands of yellow thread and three strands of blue thread, knotted together to become a friendship bracelet that all kids love to wear. It is our hope that their classmates willwear these bracelets in celebration of Coco and all individuals with Down syndrome.
PPAAGGEE 66 NNEEWWSS AANNDD NNOOTTEESS FFAALLLL 22000099
FFiirrsstt PPllaaccee WWiinnnneerr iiss FFiirrsstt PPllaaccee WWiinnnneerr iiss 1100--yyeeaarr oolldd KKaayyllyynnnnee EEnnllooee,,1100--yyeeaarr oolldd KKaayyllyynnnnee EEnnllooee,,aa 55tthh ggrraaddeerr aatt NNeeww SSccoottllaanndd aa 55tthh ggrraaddeerr aatt NNeeww SSccoottllaanndd
EElleemmeennttaarryy SScchhooooll!!EElleemmeennttaarryy SScchhooooll!!
““EEvvaann,, MMyy BBaabbyy BBrrootthheerr’’ ““EEvvaann,, MMyy BBaabbyy BBrrootthheerr’’ bbyy KKaayyllyynnnnee EEnnllooeebbyy KKaayyllyynnnnee EEnnllooee
My mother says “All children are special”. Evan was born on August 30, 2006. He was born 13 days early. He was supposed to be born on September 12th.Evan was born two days before my brother A.J.’s 5th birthday.
Evan has special needs. He has Down syndrome. Down syndrome means that he has an extra chromosome. He has three chromosome 21’s which means he may learn a little bit slower than someone whodoesn‘t have Down syndrome. He does things like walk and talk but he does it in his own time. We are verylucky because he is very healthy. Most kids born with Down syndrome are not as healthy as he is. Sometimesthey have breathing or heart problems.
Evan is getting Early Intervention Services. Early Intervention Services are for kids with special needs. Itis designed to teach them age appropriate skills. He gets speech therapy, physical therapy, occupational therapy and special instruction. That means people who work with kids with special needs come to our houseand spend time with Evan. They teach him every day skills he needs to know.
My mom doesn’t like it when you say, “Down syndrome people”, she prefers when people say, “peoplewith Down syndrome”.
I love my baby brother a lot. I love to play with him, I love his smile, and I love his laugh. Evan loves toplay. He will wrestle, play cars, dance, do ring around the rosie, and sometimes he chases me. He loves tocuddle and snuggle. He loves kisses and hugs. Evan loves to eat. When he sees my mom cooking he yellsbecause he wants food. Evan is like any other child, he just needs a little more help than children without special needs. So, before you make fun of someone with special needs you should think of how you would feelif you had special needs and someone made fun of you. It is easier to get to know a person than to make fun ofthem. I would not change anything about my baby brother because he is very special to me and my family.
And just like my mother says, “All Children Are Special.”
Kaylynne Enloe (left) receives her prize fromDSAHRC president Harm Velvis and Buddy WalkChairperson Kandi Terry (far right); Diane Lang
and NYS Senator Hugh Farley look on.
SSSSTTUUDDEENNTTSSTTUUDDEENNTTSS PPPPEENNEENN WWWWOORRDDSSOORRDDSS TTTTHHAATTHHAATT WWWWAALLKKAALLKK............
In advance of our 2009 Buddy Walk, we invited Capital Region students to participate
in the first annual “Words that Walk” Summer Inspirational Writing Campaign.
This summer, usually a time when kids can get away from homework and writing, the DSAHRC
encouraged students willing to step up to a seasonal challenge to help inspire their peers.
Students submitted various entries, from poems to songs....some short, some long.
The paper (or the computer in many cases) was their canvas.
Judging focused on the criteria that the words should promote acceptance of all students – since each and
every student has various strengths and in some cases, challenges – and help to inspire others.
Congratulations to our top three winning entries and to all the students who participated!!!
AAAANNDDNNDD TTHHEETTHHEE WWWWIINNNNEERRSSIINNNNEERRSS AAAARREERREE............
FFAALLLL 22000099 NNEEWWSS AANNDD NNOOTTEESS PPAAGGEE 77
WWWWOORRDDSSOORRDDSS MMMMAAKKIINNGGAAKKIINNGG AA DDAA DDIIFFFFEERREENNCCEEIIFFFFEERREENNCCEE
WWee rreecceeiivveedd ssoommee ggrreeaatt eennttrriieess ttoo oouurr WWoorrddss tthhaatt WWaallkk ccaammppaaiiggnn aanndd wwaanntteedd ttoo sshhaarreeWWee rreecceeiivveedd ssoommee ggrreeaatt eennttrriieess ttoo oouurr WWoorrddss tthhaatt WWaallkk ccaammppaaiiggnn aanndd wwaanntteedd ttoo sshhaarreejjuusstt aa ffeeww hhiigghhlliigghhttss ooff ssoommee ooff tthhee ootthheerr eennttrriieess tthhaatt wweerree ssuubbmmiitttteedd...... jjuusstt aa ffeeww hhiigghhlliigghhttss ooff ssoommee ooff tthhee ootthheerr eennttrriieess tthhaatt wweerree ssuubbmmiitttteedd......
“I love my brother because he… is one-of-a-kind!”“Yes, I think I will have many times to experience the joys and pains of walking throughout my life.”
“We all have our challenges, we all have our pains.We are all different but the same.”
WWhhiillee iitt iiss iimmppoossssiibbllee ttoo iinncclluuddee aallll tthhee eennttrriieess iinn tthhiiss iissssuuee,, eevveerryy oonnee ooff oouurr WWhhiillee iitt iiss iimmppoossssiibbllee ttoo iinncclluuddee aallll tthhee eennttrriieess iinn tthhiiss iissssuuee,, eevveerryy oonnee ooff oouurr ssttuuddeennttss ddiidd aa ggrreeaatt jjoobb aanndd wwee tthhaannkk tthheemm ffoorr tthheeiirr wwoorrddss ooff iinnssppiirraattiioonn!!!!!!ssttuuddeennttss ddiidd aa ggrreeaatt jjoobb aanndd wwee tthhaannkk tthheemm ffoorr tthheeiirr wwoorrddss ooff iinnssppiirraattiioonn!!!!!!
SSeeccoonndd PPllaaccee WWiinnnneerr iiss 99--yyeeaarr oolldd JJaarreedd GGrreeggoorr ooff CClliiffttoonn PPaarrkk!!SSeeccoonndd PPllaaccee WWiinnnneerr iiss 99--yyeeaarr oolldd JJaarreedd GGrreeggoorr ooff CClliiffttoonn PPaarrkk!!““MMyy FFrriieenndd wwiitthh DDoowwnn SSyynnddrroommee”” bbyy JJaarreedd GGrreeggoorr““MMyy FFrriieenndd wwiitthh DDoowwnn SSyynnddrroommee”” bbyy JJaarreedd GGrreeggoorr
Did you know that one out of every 800 people have Down syndrome? One of them is my friend NicholasIzzo. When you see him, he may only look like he is three or four but he is really nine years old!
Most people can’t understand Nick, so that makes them think he can’t understand them, But he can! Forexample if I ask him to play a video game with me, he will come play with me.
Nick is in a Down syndrome group. His Down syndrome group meets everyonce in a while, with other kids that have Down syndrome. They do fun activities likethey draw pictures, play with toy cars, play ball, and watch movies.
Don’t worry Down syndrome is not a cold, virus, or disease. You have to beborn with it.
In the beginning I sort of ignored Nick, but last summer I found out he likes toplay and do some of the same stuff as me and my brothers. Nicholas likes to watchSpongeBob and ride in a wagon. Nick is not a boring kid that just sits around all day.
Nick likes to do some funny things too. He once rode a skateboard on hisbrother’s back. Nick has a twin brother named Jason, and a younger sister named
Rosemarie. They do not have Down syndrome. He likes to play with his brother and sister.
Nick’s mom said, “Kids with Down syndrome may look different on the outside, but on the inside they arethe same. They can think, they have feelings, they can be happy, they can be sad.”
You should not think that kids with Down syndrome are scary, maybe next time you see someone with Down syndrome you should hang out with them.
TThhiirrdd PPllaaccee WWiinnnneerr iiss AAnntthhoonnyy RRaauuss,, aann 88tthh ggrraaddeerr TThhiirrdd PPllaaccee WWiinnnneerr iiss AAnntthhoonnyy RRaauuss,, aann 88tthh ggrraaddeerr aatt AAllggoonnqquuiinn MMiiddddllee SScchhooooll iinn AAvveerriillll PPaarrkk!!aatt AAllggoonnqquuiinn MMiiddddllee SScchhooooll iinn AAvveerriillll PPaarrkk!!
““KKiiddss aarree SSppeecciiaall”” bbyy AAnntthhoonnyy RRaauuss““KKiiddss aarree SSppeecciiaall”” bbyy AAnntthhoonnyy RRaauussAll k ids are special in their own way.
Some are black, white, Asian and other races.
We are different sizes, shapes and ages and we all have different talents and like different things.
Some may be slower than others but that doesn’t matter because they are getting the help they need.
Though there are some kids with disabilities they are just like you and me and should be treated the same way.
If we were all alike the world would be a boring place.
All kids are special and I am glad for that.
Second place winnerJared Gregor is cheeredon by Diane Lang of the
DSAHRC.
Third placewinnerAnthony Raus
PPAAGGEE 88 NNEEWWSS AANNDD NNOOTTEESS FFAALLLL 22000099
OOnn aa bbeeaauuttiiffuull ddaayy iinn eeaarrllyy OOccttoobbeerr,, aallmmoosstt 11000000 ppeeoopplleeOOnn aa bbeeaauuttiiffuull ddaayy iinn eeaarrllyy OOccttoobbeerr,, aallmmoosstt 11000000 ppeeoopplleettooookk aa jjooyyffuull wwaallkk aarroouunndd tthhee llaakkee iinn CCeennttrraall PPaarrkk ttoottooookk aa jjooyyffuull wwaallkk aarroouunndd tthhee llaakkee iinn CCeennttrraall PPaarrkk ttoocceelleebbrraattee iinnddiivviidduuaallss lliivviinngg wwiitthh DDoowwnn ssyynnddrroommee........cceelleebbrraattee iinnddiivviidduuaallss lliivviinngg wwiitthh DDoowwnn ssyynnddrroommee........
Ava Charbonneau isamazed by her school teacher dressed uplike a clown – Chris S. of Spotted Zebra
State Senator Paul Tonkochats with Craig Van Evera The Marines were at the Buddy
Walk, including DSAHRC dad,SSgt Donald Toro, pictured herein the center
FFAALLLL 22000099 NNEEWWSS AANNDD NNOOTTEESS PPAAGGEE 99
WWWWAALLKKIINNGGAALLKKIINNGG TTOOTTOO PPPPRROOMMOOTTEERROOMMOOTTEE IIIINNDDIIVVIIDDUUAALLIITTYYNNDDIIVVIIDDUUAALLIITTYY AANNDDAANNDD IIIINNCCLLUUSSIIOONNNNCCLLUUSSIIOONNA thousand families, friends and neighbors kicked off Down Syndrome Awareness Month by participating in
the Capital Region Buddy Walk, our one-mile inspirational pledge walk to raise awareness and funds to supportfamilies with Down syndrome.
This year’s Walk, supported by presenting sponsor the NYS Correctional Officers and Police BenevolentAssociation and several other sponsors, was a huge success in so many ways. Vital funds were raised to continue our mission, attendance was nearly doubled from previous years, there was a large media turnout and,most of all, fun was had by all.
Families embraced the day, forming teams and donning fun t-shirts and balloon hats.
“Our hope is to inspire those touched by Down syndrome and all of our youth to reach their fullest potentialand become active members of their communities,” said Kandi Terry, event organizer. “This year’s Buddy Walkfar surpassed our goals and offered a day of inspiration and celebration to the community.”
The newest additions to this year’s Walk included performances by Sparkles, the stilt-walking juggler, andDiane the Butterfly Clown, along with a visit from Rowdy, the Albany River Rats’ mascot.
A special “thank you!” to everyone who attended and gave pledge funds and donations. Your support allowsus to make this event and other programs better every year!
Rowdy, the AlbanyRiver Rats mascot, hangs outwith his new buddy, Lily Foy
Christopher Hogan leads thecrowd in a dance
It was a fun time for all!
PPAAGGEE 1100 NNEEWWSS AANNDD NNOOTTEESS FFAALLLL 22000099
MMaannyy ssppeecciiaall tthhaannkkss aarree dduuee ttoo aallll tthhee ffoollkkss wwhhooMMaannyy ssppeecciiaall tthhaannkkss aarree dduuee ttoo aallll tthhee ffoollkkss wwhhoowwoorrkkeedd ssoo hhaarrdd ttoo mmaakkee tthhee BBuuddddyy WWaallkk ssuucchh aa ggrreeaattwwoorrkkeedd ssoo hhaarrdd ttoo mmaakkee tthhee BBuuddddyy WWaallkk ssuucchh aa ggrreeaattssuucccceessss aanndd ttoo tthhee SSppoonnssoorrss wwhhoossee ggeenneerroouuss ddoonnaattiioonnssssuucccceessss aanndd ttoo tthhee SSppoonnssoorrss wwhhoossee ggeenneerroouuss ddoonnaattiioonnss
aaddddeedd ssoo mmuucchh ttoo tthhee ddaayy iinn ssoo mmaannyy wwaayyss......aaddddeedd ssoo mmuucchh ttoo tthhee ddaayy iinn ssoo mmaannyy wwaayyss......
AA ssppeecciiaall tthhaannkk yyoouu ttoo oouurr iinn--kkiinndd ssppoonnssoorrss AA ssppeecciiaall tthhaannkk yyoouu ttoo oouurr iinn--kkiinndd ssppoonnssoorrss ffoorr tthheeiirr ddoonnaattiioonnss ooff ffoooodd aanndd pprroodduuccttss tthhaatt hheellppeeddffoorr tthheeiirr ddoonnaattiioonnss ooff ffoooodd aanndd pprroodduuccttss tthhaatt hheellppeedd
mmaakkee tthhiiss yyeeaarr’’ss WWaallkk oouurr bbeesstt eevveerr!!mmaakkee tthhiiss yyeeaarr’’ss WWaallkk oouurr bbeesstt eevveerr!!
Albany River RatsBJ’s Wholesale Club
Bountiful BreadCarioto ProduceClasse Catering
Deli WarehouseFreihofers
Garelick FarmsHannafordParty City
Party Warehouse
Sam’s ClubStarbucksStewart’sSubwayWalmart
WWWWAATTEERRAATTEERR BBBBOOTTTTLLEEOOTTTTLLEE
SSSSPPOONNSSOORRPPOONNSSOORRSSSSPPOORRTTPPAACCKKPPOORRTTPPAACCKK
SSSSPPOONNSSOORRPPOONNSSOORR
AAAACCTTIIVVIITTIIEESSCCTTIIVVIITTIIEESS
SSSSPPOONNSSOORRPPOONNSSOORR
HHHHEEAALLTTHHEEAALLTTHH AANNDDAANNDD
WWWWEELLLLNNEESSSSEELLLLNNEESSSS SSSSPPOONNSSOORRPPOONNSSOORR
WWWWAALLKKAALLKK KKKKIICCKKIICCKK--OO--OOFFFFFFFF SSSSPPOONNSSOORRPPOONNSSOORR
PPPPRREESSEENNTTIINNGGRREESSEENNTTIINNGGSSSSPPOONNSSOORRPPOONNSSOORR
SSSSPPEECCIIAALLPPEECCIIAALL TTTTHHAANNKKSSHHAANNKKSS GGOOEESSGGOOEESS
TTOOTTOO PPPPEETTEETT SSSSPPAASSPPAASS OOFFOOFF
AAAAMMEERRIICCAAMMEERRIICCAA FFOORRFFOORR
SSSSPPOONNSSOORRIINNGGPPOONNSSOORRIINNGG
WWWWOORRDDSSOORRDDSS TTTTHHAATTHHAATT WWWWAALLKKAALLKK!!!!
Thanks to all the volunteers who organizedus, cheered for us, and, of course, fed us!Buddy Walk food servers included FawnMcclintock, Susan Brink and Lori Smith.
AA BBAA BBIIGGIIGG TTTTHHAANNKKHHAANNKK YYYYOOUUOOUU
TTOOTTOO
EEEERRIICCRRIICC MMMMAASSOONNAASSOONNFFOORRFFOORR OONNCCEEOONNCCEE AAGGAAIINNAAGGAAIINN
PPRROOVVIIDDIINNGGPPRROOVVIIDDIINNGG TTHHOOSSEETTHHOOSSEE
GGRREEAATTGGRREEAATT SSNNOOSSNNOO----CCOONNEESSCCOONNEESS!!!!
LLLLAASSTTLLYYAASSTTLLYY ,, ,, TTHHAANNKKSSTTHHAANNKKSS TTOOTTOO TTHHEETTHHEE
BBBBUUDDDDYYUUDDDDYY WWWWAALLKKAALLKK CCCCOOMMMMIITTTTEEEEOOMMMMIITTTTEEEEFFOORRFFOORR TTHHEETTHHEE MMAANNYYMMAANNYY HHOOUURRSSHHOOUURRSS ,, ,, CCRREEAATTIIVVEECCRREEAATTIIVVEE IIDDEEAASSIIDDEEAASS ,,,,
AANNDDAANNDD TTRREEMMEENNDDOOUUSSTTRREEMMEENNDDOOUUSS EENNEERRGGYYEENNEERRGGYY TTHHEEYYTTHHEEYY PPUUTTPPUUTT
IINNTTOOIINNTTOO TTHHIISSTTHHIISS WWOONNDDEERRFFUULLWWOONNDDEERRFFUULL EEVVEENNTTEEVVEENNTT !!!!
FFAALLLL 22000099 NNEEWWSS AANNDD NNOOTTEESS PPAAGGEE 1111
LLaassttllyy,, hhuuggee tteeaammss ooff ffaammiilliieess aanndd ffrriieennddss wweerree aa pprreesseennccee aattLLaassttllyy,, hhuuggee tteeaammss ooff ffaammiilliieess aanndd ffrriieennddss wweerree aa pprreesseennccee aatttthhiiss BBuuddddyy WWaallkk.. HHeerree aarree ttaalleess ooff ttwwoo ooff tthhoossee ffaammiilliieess -- oonneetthhiiss BBuuddddyy WWaallkk.. HHeerree aarree ttaalleess ooff ttwwoo ooff tthhoossee ffaammiilliieess -- oonneewwiitthhwwiitthh aaaa nneewwbboorrnn,,nneewwbboorrnn,, tthheetthhee ootthheerrootthheerr wwiitthhwwiitthh aannaann aallmmoosstt--tteeeenn......aallmmoosstt--tteeeenn......
Dear Braden,When you were in your mommy’s belly, we all kept saying how excited we were to meet you. The second I put my hand on your mom’s stomach to feel your kick, I knew that I loved you.The night that we found out that you were coming, I was so excited! I was finallygoing to meet you. We were all saying what a beautiful and perfect baby you weregoing to be.The next day when I heard my mom on the phone, I knew that something waswrong. When she told me that you had Down syndrome, my heart hurt.I asked my mom if you were going to be okay and she said “we are going to make Braden the happiest person that he can be.”
When I heard the news, I wanted to meet youso bad. You were the cutest thing I had everseen. Your hair was so soft and your fingerswere so long and smooth.As we were leaving, I was thinking about howwe said that you were going to be beautiful and perfect….well both of those things came true.I love you,Your Cousin ~ Olivia
Ryan has been mainstreamed since he was in kindergarten at Jefferson Elementary School within theSchalmont School District. He has a wonderful group of friends who encourage him and treat him like anyother friend. I swear Ryan knows more people in Rotterdam than I do! He is always greeted with hellos
and high fives everywhere wego. I was so worried this yearwith Ryan moving up to middleschool because you hear storiesabout how kids change in middle school; our experiencehas been nothing but positive.The friends he established inelementary school are still hisfriends. Ryan has such a greatpersonality that everyone wantsto be around him. He is veryloving and kind and mixed withthe typical roughness of boys.
Ryan has an older brother,Dan, who is a junior and all of his friends are equally as great to Ryan. One friend he became close with lastyear, Kennedy Cronk, heard about the Buddy Walk and decided to ask a few friends to walk and raisemoney. This was something she did on her own with little help from her parents. She sent letters to some ofRyan’s closest friends and there was such a positive response – everyone wanted to be a part of it. TeamSquires consisted of 36 friends and family and we raised over $1400. I know many of his classmatesthought the experience was awesome and can’t wait to do it again next year.
- Jill Squires, Ryan’s mom
Team Squires - that’s Ryan sitting on his dad’s knee
Olivia Bobarakis andBraden Massaroni
Team Massaroni
PPAAGGEE 1122 NNEEWWSS AANNDD NNOOTTEESS FFAALLLL 22000099
SSAAVVEE TTHHEE DDAATTEE!!SSAAVVEE TTHHEE DDAATTEE!!““BBeeyyoonndd OOuurr WWiillddeesstt DDrreeaammss CCoonnffeerreennccee”” wwiillll bbee hheelldd oonn ““BBeeyyoonndd OOuurr WWiillddeesstt DDrreeaammss CCoonnffeerreennccee”” wwiillll bbee hheelldd oonn
AApprriill 2244,, 22001100 wwiitthh tthhee tthheemmee:: TTEEAAMMWWOORRKK!!AApprriill 2244,, 22001100 wwiitthh tthhee tthheemmee:: TTEEAAMMWWOORRKK!!The DSAHRC Conference Committee worked hard this summer to identify a conference theme and
speakers to make the 2010 conference better than ever! We are pleased to announce that we will be back at theHoliday Inn on Wolf Road in Albany on Saturday, April 24, 2010, and we will continue our recent tradition of havinga Family Dance the night before on April 23rd.
The theme of the upcoming conference will be “Teamwork”. We have issued a Callfor Presentations outlining topics relevant to this theme including: Teamwork in education settings, the work world, community living, the work environment, our religious communities,social activities, health and medical needs, sports and much, much more!
In an effort to broaden our Sibling Program, and to emphasize the critical role of siblings on the team across the life span of individuals with Down syndrome, the Committee is honored to announce that we have secured Brian Skotko, M.D., M.P.P. as one of our expert speakers.
Brian Skotko is a genetics fellow at Children’s Hospital Boston, MassachusettsGeneral Hospital, and Brigham & Women’s Hospital, who has dedicated his professional energies toward children with cognitive and developmental disabilities. In 2001 he co-authored
the national award-winning book, Common Threads: Celebrating Life with Down Syndrome and, most recently,Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters. He is a graduate of DukeUniversity, Harvard Medical School, and Harvard’s John F. Kennedy School of Government. Brian recentlyauthored major research on how physicians deliver a diagnosis of Down syndrome to new and expectant parents.He has been featured in The Wall Street Journal, The New York Times, The Washington Post, The L.A. Times,National Public Radio’s On Point, and ABC’s Good Morning America. Brian serves on the Board of Directors for theMassachusetts Down Syndrome Congress, the National Down Syndrome Society, and Band of Angels Foundation.He further serves on the Professional Advisory Council to the National Down Syndrome Congress.
Dr. Skotko brings first-hand knowledge to his workshops as a sibling of an adult with Down syndrome. Dr. Skotko and his colleague, Sue Levine, have been leading all-day and multi-day workshops for brothers and sisters who have siblings with disabilities at local and national conferences. In these workshops, brothers and sisters have opportunities, through interactive exercises, games, and role-playing scenarios, to learn more aboutdisabilities in an accepting and confidential environment with peers. Brothers and sisters come away from theworkshops with more information, social connections with peers, and early lessons on advocacy.
We will continue to update you on the exciting additions to the 2010 Beyond Our Wildest DreamsConference! Mark your calendars and tell members of your personal own “teams” all about it!
Dr. BrianSkotko
Pho
to b
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Ide
FFAALLLL 22000099 NNEEWWSS AANNDD NNOOTTEESS PPAAGGEE 1133
RRaattiioonnaall GGeennee TTaarrggeettiinngg,, WWiitthh DDiieett,, iinn TTrreeaattiinngg RRaattiioonnaall GGeennee TTaarrggeettiinngg,, WWiitthh DDiieett,, iinn TTrreeaattiinngg DDoowwnn SSyynnddrroommeeDDoowwnn SSyynnddrroommee
TTaarraa RReennnnaa,, SShhaazzaaaann HHuusshhmmeennddyy,, DDeevvaanngg BBhhooiiwwaallaa,, AAlleexx MMaatthheeww aanndd DDaannaa CCrraawwffoorrdd ((CCeenntteerr ffoorr IImmmmuunnoollooggyy aanndd MMiiccrroobbiiaall DDiisseeaassee,, AAllbbaannyy MMeeddiiccaall CCoolllleeggee,, AAllbbaannyy,, NNYY))
Many dietary treatments have been tried to improve the symptoms of Down syndrome. These go back asfar as the so-called “U-series” over 50 years ago. This mixture of 48 ingredients claimed to improve the intelligence and appearance of children with Down syndrome, but no benefit was ever proven. The most notablesuccessors to the U-series include Warner’s Hap Caps, MSB, andNutrivene products, all products that are currently still on the market. Inaddition to these, there are many anecdotal stories claiming improvementsfrom the use of different supplements although, for each of these, othersusing the same supplements observe no effect.
Based on this lack of scientifically-proven benefit, the NationalDown Syndrome Society has decided not to endorse the use of vitamin-related therapies to treat Down syndrome. In addition, a recentstudy published in the British Medical Journal concludes that giving babies with Down syndrome antioxidants andnutrients does not help their condition improve at all, and states that until evidence of any benefit of expensive vitamin supplements is available, they cannot be recommended. Despite this lack of convincing scientific evidence, however, the use of vitamin and mineral supplements is widespread in Europe and the USA, in part dueto claims that commercial preparations have substantial benefits.
Our laboratory has considered a novel dietary approach to treating Down syndrome; namely, targeting thegenes responsible for this condition. An extra (or partial) chromosome 21 is responsible for Down syndrome, leading to an excess of its approximately 300 or so gene products. Recently, two of these genes have been identified as key and possibly even most important to this syndrome – RCAN1 and DYRK1A. Our lab co-discovered RCAN1 and has been studying it for the last ten years.
We reason that if the products of these two key genes, which are elevated in Down syndrome, can bereduced toward those levels observed in the general population, that there will be a substantial improvement in thiscondition, including cognition. We call this approach “rational gene targeting”. To achieve this goal, we have chosen to test dietary supplements with known health benefits, since their use would be simple, healthy, and cost-effective. Unlike the U-series and other products currently on the market, the healthy dietary supplements thatwe would recommend as treatment must prove able to decrease the product levels of these two key genes(RCAN1 and DYRK1A). We have recently screened a number of such agents in mice including fish oil, grapeextract, curcumin, ginkgo, fruit extract, garlic and others. We observe that fish oil and possibly grape extractappear to reduce RCAN1 significantly, and thus may have potential use in the treatment of Down syndrome pending additional studies.
At this stage, it would be valuable to hear from the local Down syndrome community regarding their experience with fish oil, grape extract, or any other such supplement. Such feedback might contribute to the selection – or even exclusion – of specific supplements from our study. We thank the greater Capital Region Downsyndrome community in advance for their comments and suggestions on this matter.
Dana Crawford, PhD(518) 262-6652 crawfod@mail.amc.edu
IImmppoorrttaanntt 22000099 DDiirreecctt IImmppaacctt GGrraanntt UUppddaatteeIImmppoorrttaanntt 22000099 DDiirreecctt IImmppaacctt GGrraanntt UUppddaatteeDue to the overwhelming number of requests received by the DSAHRC for Direct Impact Grants, the 2009 budgetallocation for this program has been exceeded. As a result, no more reimbursements will be considered for the
remainder of 2009 for grant requests for Personal Development Grants and Conference Scholarship Grants.However, you may still request reimbursement for Swim Lessons/Water Therapy Classes for 2009.
Any member wishing to be considered for a Direct Impact Grant for programs that occur in 2010 can download the application off the website, or contact the DSAHRC.
...it would be valuable to hearfrom the local Down syndrome
community regarding their experience with fish oil,
grape extract, or any other such supplement.
TThhaannkk YYoouu,, CCoorrppoorraatteeTThhaannkk YYoouu,, CCoorrppoorraatteeSSppoonnssoorrss,, ffoorr SSuuppppoorrttiinnggSSppoonnssoorrss,, ffoorr SSuuppppoorrttiinnggtthhee DDSSAAHHRRCC!!tthhee DDSSAAHHRRCC!!
SchoolhouseRoad PediatricAssociates, Inc.81 Schoolhouse Rd., Albany, NY
(518) 456-1211of Northeastern New York, LLP35 Hackett Blvd., Albany, NY 12208(518) 262-5575
PPAAGGEE 1144 NNEEWWSS AANNDD NNOOTTEESS FFAALLLL 22000099
TTHHAANNKK YYOOUU!!TTHHAANNKK YYOOUU!! A sincere thank you to the following individuals, families, and organizations for their generous donations. All gifts are greatly appreciated and assist the DSAHRC in achieving its mission.
Bonesteel, Donna & LawrenceBrunswick Center United Methodist
Church Sunday SchoolThomas & Holly Cole
District 3 Road Division AMAFraternal Order of Police
Margaret Hems Diane E. Lang
Beatrice LaClair & Geraldine GriswoldGerald & Lorraine Looney
Margaret Maney W. Daniel & Elaine McIntyre
Suzanne Lawlor Morlock John & Barbara Nottke
Elaine Naylor Timothy & Joanne O’Hara
Michael & Phyllis Ricci Michelle Scavo
John & Marie Stasiak
In Memory of Jason Anthony Scavo, Jr.
General DonationAlan AgardiScarlett DuncanJack & Vilma Farman Albert & Katherine Frazee
In Memory of Gabriel AgardiJudith Falcone Miller
In Memory of Maureen TheresaEnglish by MIckey EnglishGold’s Gym-Latham
In Honor of EmilyLautenschlagerLacey & Eric Lautenschlager
In Honor of Michael LobbKaren’s Flower ShopRichards Funeral Home of the
Mid-Hudson Valley, Inc.
In Honor of Lillian MabeeFrancis & Judy Helion
In Tribute to Dennis MeyerCharles & Anna Lobosco
In Honor of Mary Alice NidayWells Fargo Community Support
Campaign
In Honor of Ryan SquiresElinor Squires
In Memory of Thomas UnserLes & Kimberly DunsterDave Lifford
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 . . . . . . . . . . . . . . . . . . . . . . . . .Kandi TerryFundraising 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. Do you want
information about Direct Impact Grants? Need to talk to a New ParentContact? Have a question only a grandparent can answer? Then please
contact the DSAHRC at (518) 438-1113 or at info@dsahrc.org 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 – please 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.orgExecutive Director: Diane E. Lang
dlang@dsahrc.orgAdministrative Assistant: Debbie Baldwin
dbaldwin@dsahrc.orgProgram Development Coordinator: Marietta Schork Velvis
msvelvis@dsahrc.orgNewsletter Editor: Carol Rowell
editor@dsahrc.orgPresident of the Board of Directors: Harm Velvis
hvelvis@dsahrc.orgThe 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: Would you like to receive News & Notes electronically? YES NO CATEGORY (circle one): Parent Grandparent Family Friend Newsletter Exchange Self-Advocate
Professional AffiliationWould you like a DSAHRC staff member to contact you?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 DSAHRCPlease 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!!
New Phoneand FaxNumbers!
Please contact me about volunteering with the following committees:
Administrative/MembershipConferenceEducationEventsFundraisingLegislative/Public RelationsPublications/CalendarSelf-AdvocatesOther
FFAALLLL 22000099 NNEEWWSS AANNDD NNOOTTEESS PPAAGGEE 1155
Non-Profit Org.
US POSTAGEPAID
Permit No. 759
Albany, NY
1 Marcus Blvd., Suite 105Albany, NY 12205
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!
CCCCEELLEEBBRRAATTEEEELLEEBBRRAATTEE TTHHEETTHHEE HHHHOOLLIIDDAAYYSSOOLLIIDDAAYYSS WWIITTHHWWIITTHH DDSSAAHHRRCC FFDDSSAAHHRRCC FFRRIIEENNDDSSRRIIEENNDDSS!!!!
CCoommee PPaarrttyy aatt tthhee TTrreeeePPaaaadd FFuunnCCoommee PPaarrttyy aatt tthhee TTrreeeePPaaaadd FFuunn CCeenntteerr!!CCeenntteerr!!TTuueessddaayy TTuueessddaayy ���� DDeecceemmbbeerr 88 DDeecceemmbbeerr 88 ���� 66--88::3300 ppmm66--88::3300 ppmm
Plan to join DSAHRC families and friends for a fun time at the TreePaad in
Malta this coming holiday season! There’ll be snacks, games, a special guest of honor*, and
all the great activities you usually find at the TreePaad.
*Santa will be there for an hour. Bring a wrapped gift with your child’s name on it if you’d like he
or she to receive a present from Santa. Photos with Santa will be available, too!
$10 per person covers 2 ½ hours of unlimited access to the Center, including Fort
Ballocity, Rock Climbing Wall, Spider Zone, LaserTag, and the Toddler Softplay Area…
good for kids from toddlers to adults!
For each ticket sold, the TreePaad Fun Center will donate $3 to the DSAHRC!
Tickets are required and can be purchased at the Treepaad’s website, www.treepaad.com,
at the DSAHRC office, or through the DSAHRC website at www.dsahrc.org
TreePaad Fun Center is located at
2381 Route 9 in Malta
(518) 289-5475
HHOO!! HHOO!! HHOOPPEE TTOO SSEEEE YYOOUU TTHHEERREE!!
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