Full 2000 NADS Annual Report with History of Down Syndrome Organization

8/14/2019 Full 2000 NADS Annual Report with History of Down Syndrome Organization

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contentswelcomeorso family.....programs ....................resourcelibrary...............fundraising ..................conferences&seminars.........milerfamlly.................. 6publications.................. 7behaviorretreat...............8tellofamily................... 9adult down syndrome center..... 10parent support program ......... 10public awareness program ....... 11mentoring ................... 11financials....................12officers & directors.....,...... 12

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publicationsWehavedvdopL-.lprintedniaieriaLi:indvideotapeswhichsupporiihcworknfourorg.iniz:nion.Thi: are avai1:ible nOI onl)' wour members hut also 10 other parciirfadvoca-cysroups. profl$iol1ab. and members of thecommuoicyatl:rgc.NADS Neivr - an iiiform:uive bi-monthlynewslcucr provides our members wiih currCniinformadon on Down .\yndromc and NADS:iciivitics.A Baby Fint -:i beautiful bookler which Weprovidcioallouriicwparcnts.Avail:blcinboth Eni;!ish andSp:iliish,ii is,ilsnmcdbysupportgrouplthroughomthcUniicdSi:ite5.c.-inada, and orhercounirit:.NA web site- www.ii:ids.orgThe Inrcrnctirfilli: wiih an:imostcndh:s.sourccofinformadon,rcfcrcnccmaicrial,andpeople with whom you em correspond. Ourwchsitcisanoihcrwaj'wcprovidc\'ciuahleinform,aionon Down 5)udroliietu,lbruadaudiencc.

NADSArr!iu- a 30.minuli' c.~ercise vidoo_t~pe fe~iiring teens and adult wiih Down 5)n-dromc pankipatiiig iii a ~nmpl~te aerobicworkom. This iapc i~ u$Cd :1\ a hnme o;~rci5eguide and in groul'cxcrciic progr;im,.PottcrScrcs-e.ichoftlicse.iix po~rcrsfca.turcs a young persoii Wiih Down syidrnme pcr-fnrmini;anactI't)'ordispJayiligatalemwiihthe iheme "Don't Be Slltpriscd.~ We disiibliciliepo5teriio.lchoo1s:idcornmunitynrgani7_i_tiomasamc:imofprumlltingpu.iiivel'ublicawarclicssofDowlisyndromc.

"A BAY FIRST... "


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behaviorretreat(li:iddiiiol1 (ocdebr:uinglhc:succe5i:ofour children nod adult with Down 5)'1-droim" NADS i., cxircmdy coiiccrm:dalioullhoscwhoh.ivcmorcsignifiClltcli:illcngc."Somcchildrcnh:ivcadditionaldiig1105C",Sucli:LI Anendon DdcirlI-rpcr:ictiviij' D.,order (ADHD), POD(Auii"ii)01 olhcrhdi:iviororncurologic:di,OldcIS.inordcrrnl'lfi'idc')UPpOrlioihcscf:iii.lie, and hdi i.l,'dop coping irl"m:gics, wehddollt im Bdi;iviorl':cm:ai in March1991.hi,lddirin"",l'wviding,..uahlcIIform:ijoii,md insiglii.thc Einiilic,wcrcabkio.,haicwiilic;,di oihcrand workiogcdiCluiiihdrl'riihlcii",111 Apri! 2UUOI,'1l Eimjjie, parl;il'alCd iiiour third IIclt",ii He!r",H alU!ag,lin it was"t'r:' U~'C,~l-,,1. h, addiiiolllU work,hopsfor d" pan"m, ihdi diildrni wcr~ wdl-L',ir~d !orb'a.rclLp"rCxpcicIlCcd,mm_ .ll;ricdrc"l'ia'worhr"

"1 was able to share my worries anddisappointments with people whounderstood what we have beengoing through, "


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adult downsyndrome centeri

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NADS was instrumental in the development ofthe Adult Down Syndrome Center of LumernGeneral Hospital in Park Ridge, Ilinois. TheCenter opened in January 1992 and initiallyserved patients 2 mornings a momh. However,because of the high demand (over a thousandpatients have been served), patients are nowseen 5 days a week. Some people use theCenter for basic health CLC, others forannual physicals while some come for specificproblems such as depression, changes inbehavior or when they have experienced asignificant loss. Regardless of their needs,members of the Center's multi-disciplinaryteam treat each patient with dignity andrespect.

psychosocial cae. Therefore a member of ourOutreach Team visits them at home. The olderpopulation that we serve was, to a large extent,hidden within their F.ilics; many had notreceived basic services such as heathca oreducation. We care deeply abollt our oldercitizens most of whom were not as forrunate asour friend, iuc, whose story appears bdow.NADS is involved in many ways at the Center.In addirion to our Resource Center, we have anoffce where Ann jonaius, our ResourceCoordinator, is based. We are also responsiblefor the Parent Advocate position, part of theOutreach Program and a ponion ofPsychosocial services.

parentsupportProviding SUPPOH to parents of newly diag.nosed infants with Down sydrome is trulyone of our most import services. Afer the ini-tial referra, our Family Support Coordinator,Kim Xidas, arranges for one of our supportvolunteers ro contact the f.mily. Volumeersvisit the new parents in the hospital or in thefamily's home. In addition to the one-an-onesupport, volunteers organize informal gather-ings so that new parents ca meet each otherand share their experiences. We provide anew-parem packet, which includes up-to.date books on Down sydrome as well asinfrmation about community service suchas parent suppOrt groups, early interventionprograms, medica resources and respite care.

To bew:r serve ourHispanic families,NADS publishes itsParent Support

brochure in Spanish

materials in Spanish mthese families. Elevenpercent of the familieslearned of their child'sDown syndromediagnosis throughprenatal testing andthey received suppOrt from volunteers who alsolearned of their child's Down syndrome diag-nosis through prenatal testing.

In January 1999 the Center initiated theFamily Outreach Program. Some older menand women with Down syndrome are unableto go to the Center for their medical and/or

In December 2000, the Center moved to a newJocation at 1999 Dempster Street, Park Ridge,which is right on the campus of LutheranGeneral Hospital.

During the year 2000 NADS provided suppOrtto 160 new failes primarily ifi the Chicagometropolitan area. The youngest maternal agewas 17 and the oldest materna! a~e was 45"(ij"th.. I(\!) (,i:i;i,., ;(i"," ..\'T..I-'I~,l1ii. .ili~!oiir hilinf,lI,i1 V,)ltll,~\T~ fir,\'"i~kd .'uiioil ;\nd


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public awareness programIn 1984 we held our first Public SpeakerTraining Course and since thai rime we havetrained three additional groups. The goal ofihis program is to bring about a better under-standing and acceptance of children and adultswith Down syndrome. Some of our speakersaddress medical profesionals, whi(~ othersfocus on educators, students and communityorganizations.

During 2000 Linda Picchi, ProgramCoordinator, or one of our speakers gavepresentations to 30 groups of medicalprofessionals including Pediatricians,Obstetricians, Residents, Genetic Counselors,Nurses and Social Workers. In addition wespoke with many other groups, includingelementary, high schooL. and college students,These presentations were given in the city ofChicago as well as Cook, DuPage, Kane,Lake, McHenry and \X1ll counties.

. ".11 iuiseentoringThe NADS Memoring Program developsfriendships for adults with Down syndromewho live at home, but don't have many contactsin the community. Others live in residentialprograms and enjoy gcrring our and having fun.

and trustedcounselor or


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offcers directorsBil McCarthyPresident

Susan AbramsGail AndersonBrian ChicoineDiane Gomboi:

First Vicc.Presidcnt Therese DevineTheresa MalkowskiSecond Vice~Presidem

Kathe Doremiis

Margaret BenderTreasurer

D~ma LiChapclleKathryn L.avinAnne MaddockChristine l\'laxwdlMelody Geraci

Recording Sccrct:iry

Th..20(H\Huiid;i\App~;lJ emL

Liz MinogueStq)hanicNcriSandy Pa1.crunasMichael ReningerLydia RileyJackie RotondiDavid ShimanekTeresa Villasenorl:iwana Williams

2000 :wno


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letter from the president friendshipBy: Lydia Ono

As I read these stories of families whom NADS has touched,I see even more clearly why I have chosen to be a part of thisorganization, My family and i too looked to NAOS for help tenyears ago when our son Patrick was born, and I am honoredto be allowed to contribute back in some small way to otherfamilies like mine,NADS is about people helping peopie, As a small organizationNADS has been able to make large contributions to individualsand families thanks to those who make up NADS, i would liketo acknowledge and thank a few of them;

Sheila Hebein for her spirited and inspirationai leadership,our hard-working staff.our dedicated Board members,our many volunteers,our members,and the families and individuals with Down syndromewho enrich our lives on a daily basis.

You have your ownFriendship garden.Tending a friendship gardenNeeds friendship,Love, and care in order to grow,Every time aPerson smiles, a flowet blossoms.That's why they sayA smile goes a long way.The more you tendYour garden withLove, friendship, cae, andSmiles, yoll have the greatestGift of al, you'll haveFriends, Not just friends, you'llAlso have a gardenOf friends that will neverStop growing,

I invite your suggestions, feedback and involvemenl, and ask for your continuedfinancial and emotional support to help carry out the mission of NADS to"ensure that all persons with Oown syndrome have the opportunity 10 achievetheir potential in all aspects of community life:Sincerely,

7:i!c~rth~G~President 2000


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Documents

Full 2000 NADS Annual Report with History of Down Syndrome Organization