#cphc chat transcript

8/13/2019 #CPHC Chat Transcript

1/12

Gail Zahtz @GailZahtz Info about the link between #downsyndromeand#alzheimers@toughlovefox @CHopeurrayhttp!""wwwglobaldownsyndromeorg"news$%ommunity "press$releases$&"&'()$press$releases"alzheimers$asso%iation$global$down$syndrome$foundation$grants * from@G+,-oundation#C.HC

Gail Zahtz @GailZahtz / beautiful summary from @walkersvillemomabout the week"%hat"topi%shttp!""walkersvillemomweebly%om"("post"&'()"(( "on$fa%ing$my$fears$with$a$little$help$from$my$%yber$friendshtml *Gail Zahtz @GailZahtz Here are all the arti%les we0ve done so far on#downsyndromefor #CPHChttp!""demanddesignnet"%ategory"revie ws"%ommunities"down$syndrome * %%Gail Zahtz @GailZahtz 1e0re on the hour$ please introdu%e yourselves$ we are an open %ommunity$ so anyone %an 2umpin with 3uestions and %omments at#CPHC

Global Down Syndrome @G+,-oundation 1el%ome everyone to today0s tweet %hat4 #+ownsyndrome#CPHC

Andrew Lopez, RN @nursefriendly Hello 5veryone6 /ndrew 7opez6#89from#9ew:ersey6 #Heatlh%are#;weet%hat#5nthusiast%he%king out Carpool Health4#cphc:oin us4#nurseup

Global Down Syndrome @G+,-oundation Global supports many #+ownsyndromeorganizations


2/12

Stephanie Holland @walkersvillemom y pleasure4 ,< important to me and many in my position4@GailZahtz @G+,-oundation #C.HC

ardra Si#ora @ardra,ikora #CPHCI have a &) F< son with +own syndrome@ar%usmusi%al /nxious to hearyour resear%h and info today

Dennis cG!ire @G+,?%Guire Im new to@G+,-oundation ery ex%ited to 2oin team Helping to laun%h world$%lassadult medi%al %are = well$being#+ownsyndrome #CPHC

Global Down Syndrome @G+,-oundation 7earn about groundbreaking s%ien%e at Crni% Institute!http!""bitly"(bJ(K;(#+ownsyndrome#CPHC@gailzahtz

Global Down Syndrome @G+,-oundation -unding from donors6 foundations6 events6 a%ademi% partners 1ere verygrateful4 #CPHC

ichelle Sie "hitten @,1?+s Lnfortunately6 #/lzheimersis problemM est up to A'N of people w" #+ownsyndromewill get early onset #CPHC

ardra Si#ora @ardra,ikora @,[email protected] %larify Oearly onsetO $ )' yearsD >'D A'D

Dennis cG!ire@G+,?%Guire 5arly onset in my pra%ti%e is late )'s but ma2ority are in >'s #C.HC@ardra,ikora

Dennis cG!ire @G+,?%Guire &") of people w" #+ownsyndromew" loss of fun%tion do not have#/lzheimersbutreversible %ondition #CPHC@gailzahtz

Stephanie Holland @walkersvillemom @G+,?%Guire8eallyDD444 8eversible howD /nd how do we knowthe differen%eD #C.HC

ardra Si#ora @ardra,ikora @G+,?%Guire@GailZahtzHow do you find"diagnose the differen%eDbetween /lzheimers and reversible %onditionsD

ardra Si#ora @ardra,ikora @walkersvillemom@G+,?%GuireFeah6 what she said !

Dennis cG!ire @G+,?%Guire Fou know differen%e w" good medi%al %are providersM reversible meanstreatable ore to %ome #C.HC@walkersvillemom@G+,?%Guire

Stephanie Holland @walkersvillemom ,o hard for most of us to find4 8; @G+,?%Guire! Fou knowdifferen%e w" good medi%al %are providersM#CPHC@G+,?%Guire

Dennis cG!ire @G+,?%Guire How reversibleD ;hru med"behavioral treatments eg do% treats sleep

apnea6 resolve lifestyle stressors #C.HC@walkersvillemom@G+,?%Guire

Gail Zahtz @GailZahtz1hat are you hoping to a%%omplish @G+,?%Guire1hat tie ins do you see that make#mentalhealthimportant for#downsyndrome#CPHC

Global Down Syndrome @G+,-oundation Global establishing world$%lass #/lzheimers%enter w" subspe%ialty foradults w" #+ownsyndrome= /+ http!""bitly"(b/Ftm- #CPHC@gailzahtz
https://twitter.com/walkersvillemomhttps://twitter.com/walkersvillemomhttps://twitter.com/walkersvillemomhttps://twitter.com/walkersvillemomhttps://twitter.com/walkersvillemomhttps://twitter.com/GailZahtzhttps://twitter.com/GailZahtzhttps://twitter.com/GailZahtzhttps://twitter.com/GDSFoundationhttps://twitter.com/GDSFoundationhttps://twitter.com/GDSFoundationhttps://twitter.com/search?q=%23CPHC&src=hashhttps://twitter.com/search?q=%23CPHC&src=hashhttps://twitter.com/search?q=%23CPHC&src=hashhttps://twitter.com/MardraSikorahttps://twitter.com/MardraSikorahttps://twitter.com/MardraSikorahttps://twitter.com/MardraSikorahttps://twitter.com/search?q=%23CPHC&src=hashhttps://twitter.com/search?q=%23CPHC&src=hashhttps://twitter.com/MarcusMusicalhttps://twitter.com/MarcusMusicalhttps://twitter.com/GDS_McGuirehttps://twitter.com/GDS_McGuirehttps://twitter.com/GDS_McGuirehttps://twitter.com/GDS_McGuirehttps://twitter.com/GDSFoundationhttps://twitter.com/GDSFoundationhttps://twitter.com/GDSFoundationhttps://twitter.com/search?q=%23Downsyndrome&src=hashhttps://twitter.com/search?q=%23Downsyndrome&src=hashhttps://twitter.com/search?q=%23Downsyndrome&src=hashhttps://twitter.com/search?q=%23Downsyndrome&src=hashhttps://twitter.com/search?q=%23Downsyndrome&src=hashhttps://twitter.com/search?q=%23CPHC&src=hashhttps://twitter.com/search?q=%23CPHC&src=hashhttps://twitter.com/GDSFoundationhttps://twitter.com/GDSFoundationhttps://twitter.com/GDSFoundationhttps://twitter.com/GDSFoundationhttp://t.co/E7F6CPLABMhttp://t.co/E7F6CPLABMhttp://t.co/E7F6CPLABMhttps://twitter.com/search?q=%23Downsyndrome&src=hashhttps://twitter.com/search?q=%23Downsyndrome&src=hashhttps://twitter.com/search?q=%23Downsyndrome&src=hashhttps://twitter.com/search?q=%23CPHC&src=hashhttps://twitter.com/search?q=%23CPHC&src=hashhttps://twitter.com/search?q=%23CPHC&src=hashhttps://twitter.com/GailZahtzhttps://twitter.com/GailZahtzhttps://twitter.com/GDSFoundationhttps://twitter.com/GDSFoundationhttps://twitter.com/GDSFoundationhttps://twitter.com/GDSFoundationhttps://twitter.com/search?q=%23CPHC&src=hashhttps://twitter.com/search?q=%23CPHC&src=hashhttps://twitter.com/search?q=%23CPHC&src=hashhttps://twitter.com/MSW_Dshttps://twitter.com/MSW_Dshttps://twitter.com/MSW_Dshttps://twitter.com/MSW_Dshttps://twitter.com/search?q=%23Alzheimers&src=hashhttps://twitter.com/search?q=%23Alzheimers&src=hashhttps://twitter.com/search?q=%23Downsyndrome&src=hashhttps://twitter.com/search?q=%23Downsyndrome&src=hashhttps://twitter.com/search?q=%23Downsyndrome&src=hashhttps://twitter.com/search?q=%23CPHC&src=hashhttps://twitter.com/search?q=%23CPHC&src=hashhttps://twitter.com/search?q=%23CPHC&src=hashhttps://twitter.com/MardraSikorahttps://twitter.com/MardraSikorahttps://twitter.com/MardraSikorahttps://twitter.com/MardraSikorahttps://twitter.com/MSW_Dshttps://twitter.com/MSW_Dshttps://twitter.com/MSW_Dshttps://twitter.com/GailZahtzhttps://twitter.com/GailZahtzhttps://twitter.com/GailZahtzhttps://twitter.com/GDS_McGuirehttps://twitter.com/GDS_McGuirehttps://twitter.com/GDS_McGuirehttps://twitter.com/GDS_McGuirehttps://twitter.com/search?q=%23CPHC&src=hashhttps://twitter.com/search?q=%23CPHC&src=hashhttps://twitter.com/search?q=%23CPHC&src=hashhttps://twitter.com/MardraSikorahttps://twitter.com/MardraSikorahttps://twitter.com/GDS_McGuirehttps://twitter.com/GDS_McGuirehttps://twitter.com/GDS_McGuirehttps://twitter.com/GDS_McGuirehttps://twitter.com/search?q=%23Downsyndrome&src=hashhttps://twitter.com/search?q=%23Downsyndrome&src=hashhttps://twitter.com/search?q=%23Downsyndrome&src=hashhttps://twitter.com/search?q=%23Alzheimers&src=hashhttps://twitter.com/search?q=%23Alzheimers&src=hashhttps://twitter.com/search?q=%23Alzheimers&src=hashhttps://twitter.com/search?q=%23CPHC&src=hashhttps://twitter.com/search?q=%23CPHC&src=hashhttps://twitter.com/search?q=%23CPHC&src=hashhttps://twitter.com/GailZahtzhttps://twitter.com/GailZahtzhttps://twitter.com/walkersvillemomhttps://twitter.com/walkersvillemomhttps://twitter.com/walkersvillemomhttps://twitter.com/walkersvillemomhttps://twitter.com/GDS_McGuirehttps://twitter.com/GDS_McGuirehttps://twitter.com/search?q=%23CPHC&src=hashhttps://twitter.com/search?q=%23CPHC&src=hashhttps://twitter.com/MardraSikorahttps://twitter.com/MardraSikorahttps://twitter.com/MardraSikorahttps://twitter.com/MardraSikorahttps://twitter.com/GDS_McGuirehttps://twitter.com/GDS_McGuirehttps://twitter.com/GDS_McGuirehttps://twitter.com/GailZahtzhttps://twitter.com/GailZahtzhttps://twitter.com/GailZahtzhttps://twitter.com/MardraSikorahttps://twitter.com/MardraSikorahttps://twitter.com/MardraSikorahttps://twitter.com/MardraSikorahttps://twitter.com/GDS_McGuirehttps://twitter.com/GDS_McGuirehttps://twitter.com/GDS_McGuirehttps://twitter.com/GDS_McGuirehttps://twitter.com/GDS_McGuirehttps://twitter.com/GDS_McGuirehttps://twitter.com/GDS_McGuirehttps://twitter.com/search?q=%23CPHC&src=hashhttps://twitter.com/search?q=%23CPHC&src=hashhttps://twitter.com/search?q=%23CPHC&src=hashhttps://twitter.com/walkersvillemomhttps://twitter.com/walkersvillemomhttps://twitter.com/GDS_McGuirehttps://twitter.com/GDS_McGuirehttps://twitter.com/GDS_McGuirehttps://twitter.com/walkersvillemomhttps://twitter.com/walkersvillemomhttps://twitter.com/walkersvillemomhttps://twitter.com/walkersvillemomhttps://twitter.com/GDS_McGuirehttps://twitter.com/GDS_McGuirehttps://twitter.com/search?q=%23CPHC&src=hashhttps://twitter.com/search?q=%23CPHC&src=hashhttps://twitter.com/search?q=%23CPHC&src=hashhttps://twitter.com/GDS_McGuirehttps://twitter.com/GDS_McGuirehttps://twitter.com/GDS_McGuirehttps://twitter.com/GDS_McGuirehttps://twitter.com/GDS_McGuirehttps://twitter.com/GDS_McGuirehttps://twitter.com/GDS_McGuirehttps://twitter.com/search?q=%23CPHC&src=hashhttps://twitter.com/search?q=%23CPHC&src=hashhttps://twitter.com/search?q=%23CPHC&src=hashhttps://twitter.com/walkersvillemomhttps://twitter.com/walkersvillemomhttps://twitter.com/GDS_McGuirehttps://twitter.com/GDS_McGuirehttps://twitter.com/GDS_McGuirehttps://twitter.com/GailZahtzhttps://twitter.com/GailZahtzhttps://twitter.com/GailZahtzhttps://twitter.com/GailZahtzhttps://twitter.com/GDS_McGuirehttps://twitter.com/GDS_McGuirehttps://twitter.com/search?q=%23mentalhealth&src=hashhttps://twitter.com/search?q=%23mentalhealth&src=hashhttps://twitter.com/search?q=%23mentalhealth&src=hashhttps://twitter.com/search?q=%23downsyndrome&src=hashhttps://twitter.com/search?q=%23downsyndrome&src=hashhttps://twitter.com/search?q=%23CPHC&src=hashhttps://twitter.com/search?q=%23CPHC&src=hashhttps://twitter.com/search?q=%23CPHC&src=hashhttps://twitter.com/GDSFoundationhttps://twitter.com/GDSFoundationhttps://twitter.com/GDSFoundationhttps://twitter.com/GDSFoundationhttps://twitter.com/search?q=%23Alzheimers&src=hashhttps://twitter.com/search?q=%23Alzheimers&src=hashhttps://twitter.com/search?q=%23Alzheimers&src=hashhttps://twitter.com/search?q=%23Downsyndrome&src=hashhttps://twitter.com/search?q=%23Downsyndrome&src=hashhttps://twitter.com/search?q=%23Downsyndrome&src=hashhttp://t.co/lnZmomuPAphttp://t.co/lnZmomuPAphttps://twitter.com/search?q=%23CPHC&src=hashhttps://twitter.com/search?q=%23CPHC&src=hashhttps://twitter.com/search?q=%23CPHC&src=hashhttps://twitter.com/GailZahtzhttps://twitter.com/GailZahtzhttps://twitter.com/walkersvillemomhttps://twitter.com/GailZahtzhttps://twitter.com/GDSFoundationhttps://twitter.com/search?q=%23CPHC&src=hashhttps://twitter.com/MardraSikorahttps://twitter.com/search?q=%23CPHC&src=hashhttps://twitter.com/MarcusMusicalhttps://twitter.com/GDS_McGuirehttps://twitter.com/GDSFoundationhttps://twitter.com/search?q=%23Downsyndrome&src=hashhttps://twitter.com/search?q=%23CPHC&src=hashhttps://twitter.com/GDSFoundationhttp://t.co/E7F6CPLABMhttps://twitter.com/search?q=%23Downsyndrome&src=hashhttps://twitter.com/search?q=%23CPHC&src=hashhttps://twitter.com/GailZahtzhttps://twitter.com/GDSFoundationhttps://twitter.com/search?q=%23CPHC&src=hashhttps://twitter.com/MSW_Dshttps://twitter.com/search?q=%23Alzheimers&src=hashhttps://twitter.com/search?q=%23Downsyndrome&src=hashhttps://twitter.com/search?q=%23CPHC&src=hashhttps://twitter.com/MardraSikorahttps://twitter.com/MSW_Dshttps://twitter.com/GailZahtzhttps://twitter.com/GDS_McGuirehttps://twitter.com/search?q=%23CPHC&src=hashhttps://twitter.com/MardraSikorahttps://twitter.com/GDS_McGuirehttps://twitter.com/search?q=%23Downsyndrome&src=hashhttps://twitter.com/search?q=%23Alzheimers&src=hashhttps://twitter.com/search?q=%23CPHC&src=hashhttps://twitter.com/GailZahtzhttps://twitter.com/walkersvillemomhttps://twitter.com/GDS_McGuirehttps://twitter.com/search?q=%23CPHC&src=hashhttps://twitter.com/MardraSikorahttps://twitter.com/GDS_McGuirehttps://twitter.com/GailZahtzhttps://twitter.com/MardraSikorahttps://twitter.com/GDS_McGuirehttps://twitter.com/GDS_McGuirehttps://twitter.com/search?q=%23CPHC&src=hashhttps://twitter.com/walkersvillemomhttps://twitter.com/GDS_McGuirehttps://twitter.com/walkersvillemomhttps://twitter.com/GDS_McGuirehttps://twitter.com/search?q=%23CPHC&src=hashhttps://twitter.com/GDS_McGuirehttps://twitter.com/GDS_McGuirehttps://twitter.com/search?q=%23CPHC&src=hashhttps://twitter.com/walkersvillemomhttps://twitter.com/GDS_McGuirehttps://twitter.com/GailZahtzhttps://twitter.com/GDS_McGuirehttps://twitter.com/search?q=%23mentalhealth&src=hashhttps://twitter.com/search?q=%23downsyndrome&src=hashhttps://twitter.com/search?q=%23CPHC&src=hashhttps://twitter.com/GDSFoundationhttps://twitter.com/search?q=%23Alzheimers&src=hashhttps://twitter.com/search?q=%23Downsyndrome&src=hashhttp://t.co/lnZmomuPAphttps://twitter.com/search?q=%23CPHC&src=hashhttps://twitter.com/GailZahtz


3/12

Stephanie$ @


4/12

Gail Zahtz @GailZahtz It0s a%ross the board$ though exer%ise and sensory %an stop #alzheimersor slowwith #+,@ardra,ikora@sandyhubbard#C.HC

Global Down Syndrome @G+,-oundation Great point6 Gail4 #C.HC@GailZahtz@ardra,ikora@sandyhubbard

Andrew Lopez, RN @nursefriendly @GailZahtz@ardra,ikora@sandyhubbard,%ary6 too often I seethe#elderlytrying to %are for the #elderly6not a great situation #%ph%

ardra Si#ora @ardra,ikora @nursefriendly@GailZahtz@sandyhubbardy mother has/lzheimers ,he is mu%h harder to %are for than my son

Andrew Lopez, RN @nursefriendly @ardra,ikora@GailZahtz@sandyhubbardCan imagine6 seeingwhat I do in #nursinghomes6#geriatri%s Is a full$time 2ob #%ph%

Global Down Syndrome @G+,-oundation 9o %orrelation between healthy IB =#/lzheimers that weknow of#CPHC@gailzahtz

Sandy H!bbard @sandyhubbard 1e appre%iate the #/lzheimersresour%es pouring into#CPHC%hat today Clearlythere is a lot of passion and resear%h on this topi%

Global Down Syndrome @G+,-oundation 7earn about best pra%ti%es in medi%al %are for %hildren w" #+ownsyndromeat ,ie Center!http!""bitly"I))FLR #CPHC@gailzahtz

Andrew Lopez, RN @nursefriendly @G+,-oundation@GailZahtz7ife is so mu%h easier when#parents=#%aregivershave a%%ess to #edu%ation=#resour%es!#%ph%#mh

Stephanie$ @


5/12

Gail Zahtz @GailZahtz It0s really s%ary4 1e0re looking at over )' I77I


6/12

Andrew Lopez, RN @nursefriendly @


7/12

ardra Si#ora @ardra,ikora)h@G+,?%Guire@GailZahtz#C.HC@G+,-oundation$ without a spe%ialized %lini% in most%ommunities6 how should %aregivers get helpD diagnosis

Gail Zahtz @GailZahtz)hHow do you rule out %hanges when the brain of someone with#downsyndromeis the same as with#/lzheimers@G+,?%Guire@ardra,ikora#C.HC

Dennis cG!ire @G+,?%Guire)h7ook for diff providers that have sensitivity to the population in your lo%ality #C.HC@ardra,ikora@GailZahtz

Global Down Syndrome @G+,-oundation)h7ook for online resour%es and experts su%h as@G+,?%Guireare open to responding to health3uestions #C.HC@ardra,ikora@GailZahtz

Andrew Lopez, RN @nursefriendly)h@ardra,ikora@G+,?%Guire@GailZahtz@G+,-oundation,upport groups6 online dis%ussions6 likethis one6 lo%ate do%tors knowledgeable#%ph%

Andrew Lopez, RN @nursefriendly)h@ardra,ikora@G+,?%Guire@GailZahtz@G+,-oundationFour do%tors if at a loss6 will take noti%eif you find %redible resour%es #%ph%

Andrew Lopez, RN @nursefriendly)h@ardra,ikora@G+,?%Guire@GailZahtz@G+,-oundation7ike with#rarediseases#orphandiseases6 sometimes you need to edu%ate do%tors#%ph%

Sandy H!bbard @sandyhubbard)h


8/12

Stephanie Holland @walkersvillemom&hI learned yesterday that exer%ise = heart health are important whi%h is a problem for many #CPHC$ I need to do betterin this area

Global Down Syndrome @G+,-oundation)h/greed#C.HC@walkersvillemom

A!toimm!ne Gal @/utoimmuneGal)h@walkersvillemomdefinitely improves many %onditions but diffi%ult to find safe regimen for many with#%hroni%illness #%ph%

Andrew Lopez, RN @nursefriendly)h@walkersvillemom/s a #9ationof#Cou%h.otatoes6 we0ve got a lot of work to do !#%ph%

ichelle Sie "hitten @,1?+s&h-or#+ownsyndrome6 as w" typi%al pop6 studies show exer%ise6 nutrition = routine benefit ability of our%hildren = adults #CPHC@GailZahtz

Dennis cG!ire @G+,?%Guire&h,hort$term memory %hanges are often best indi%ationM still need to rule out other %auses #+ownsyndrome#CPHC@ardra,ikora@gailzahtz

Sandy H!bbard @sandyhubbard .arents6 Is it a privilege or burden to know your %hildren are more pre$disposed to%ertain %onditionsD#CPHC

ichelle Sie "hitten @,1?+s)h-or me personally6 information is knowledge Knowledge is empowering #C.HC@sandyhubbard@gailzahtz

Gail Zahtz @GailZahtz)h;errifi% to see you i%helle4@,1?+sI0ve been very inspired by your work$ %an you talk about yourpersonal 2ourney to@G+,-oundation#C.HC

ichelle Sie "hitten @,1?+s)hI make sure to follow /mer /sso% of .ed guidelines for all my daughter0s %he%kupshttp!""pediatri%saappubli%ationsorg"%ontent"(&Q"&")V)fullpdf * #C.HC@sandyhubbard

ichelle Sie "hitten @,1?+s)hy ('yo daughter w"#+ownsyndrome= dis%overy of la%k of resear%h = good medi%al %are #C.HC@GailZahtz

Gail Zahtz @GailZahtz)h,o many advoa%ies have been started by one person"family like you did@,1?+swhile others don0t$what made it a mission for youD#C.HC

ichelle Sie "hitten @,1?+s)hIt was sheer lu%k y family and I had resour%es so I %ould work full$time on this* #C.HC@GailZahtz@,1?+s

ichelle Sie "hitten @,1?+s)h1e have )''W volunteers6 many parents6 who are e3ually important to what we do I0m 2ust lu%ky #C.HC@GailZahtz

Gail Zahtz @GailZahtz)hFes6 but there are many who have the resour%es who don0t %ommit themselves like you do$ @,1?+s#C.HC1hat0s the differen%e do you thinkD

Gail Zahtz @GailZahtz)h1hat do your volunteers doD 1hat do you need more from our volunteersD #C.HC@,1?+s

ichelle Sie "hitten @,1?+s)hI0m a workaholi% ! and I %ome from a long line of workaholi%s#C.HC@GailZahtz

ichelle Sie "hitten @,1?+s)holunteers organize silent au%tion6 assist w" +are to .lay sports programs6 man info booths6 partner fordan%es6 lots more#C.HC@GailZahtz

ichelle Sie "hitten @,1?+s)hHoping to inspire others to %reate %enters = we %an provide blueprint #+ownsyndrome#C.HC@lalamarwoo@sandyhubbard@GailZahtz
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9/12

Stephanie Holland @walkersvillemom&hF5,44444444444444 8;@,1?+s!Hoping to inspire others to %reate %enters = we %anprovide blueprint #+ownsyndrome#CPHC

Gail Zahtz @GailZahtz&hFes too4 8;@walkersvillemom!F5,4 8; @,1?+s!Hoping to inspire others to %reate%enters = we %an provide blueprint#+ownsyndrome#CPHC

Gail Zahtz @GailZahtz)hI am sure that the Carpool will be happy to help you along the way4 ;alking to +r .otter6 I wanted to getout and see ur work4 @,1?+s#C.HC

Stephanie Holland @walkersvillemom&h;ake me44 lol 8; @GailZahtz!I wanted to get out and see ur work4@,1?+s#CPHC

Global Down Syndrome @G+,-oundation)h1e wel%ome all of you to Colorado4 .lease do visit@GailZahtz@,1?+s

)aby "hisperer @lalamarwoo)h@,1?+s@sandyhubbard@GailZahtzits my life mission6 would be honored to help6 lots of pediexperien%e

ichelle Sie "hitten @,1?+s)h1e0d be honored to have you @lalamarwoo@sandyhubbard@GailZahtz

Gail Zahtz @GailZahtz&h1e0ll make sure for any 3uestions that are not answered today that we have full follow$up posts and resour%es from#CPHC44@G+,-oundation

Stephanie Holland @walkersvillemom)h@GailZahtz@G+,-oundation@sandyhubbardI0m so on that mission4

Dennis cG!ire @G+,?%Guire&hake sure you ex%lude every other %ause then refer to #/lzheimersspe%ialist who %an evaluate#CPHC#GailZahtz#downsyndrome

Dennis cG!ire @G+,?%Guire&h/greed Jurden of %are is often on family #CPHC@+eso%ioi%hele@GailZahtz@ardra,ikora@sandyhubbard

Stephanie Holland @walkersvillemom&h@+eso%ioi%hele@GailZahtz@ardra,ikora@sandyhubbard@G+,-oundationI0m so afraid we0ll both get early onset/+44 #CPHC

ardra Si#ora @ardra,ikora&h@walkersvillemom@G+,-oundationIs that an old studyD the one that us OFoung mothersO will get/lzheimersD hehe6 we0re young ,tephanie

Stephanie Holland @walkersvillemom&h@ardra,ikora@G+,-oundationI know right4D ,aid we had A times the %han%e of getting it $ sametime our guys did4 #C.HC

ichele Desocio @+eso%ioi%hele&h@walkersvillemom@GailZahtz@ardra,ikora@sandyhubbard@G+,-oundationa valid %on%ern

indeedardra Si#ora @ardra,ikora&h@walkersvillemom@G+,-oundation


10/12

ichael (ose*owicz @tough7oveforx)h@GailZahtz+o we think the new provisions about ental Health in /C/ will helpD#CPHC@G+,?%Guire@lalamarwoo

Dennis cG!ire @G+,?%Guire)hwe hope we do6 the intention of the a%t is to provide the help6 we hope it does@tough7oveforx@GailZahtz@lalamarwoo@G+,-oundation

ichael (ose*owicz @tough7oveforx)h@G+,?%Guire/ny thoughts bout %hallenges even with the law passedD#C.HC@GailZahtz@lalamarwoo@G+,-oundation

Dennis cG!ire @G+,?%Guire)h1e0ll need strong advo%a%y from parent = professional groups in order for law to su%%eed#C.HC@tough7oveforx@GailZahtz@lalamarwoo

ichael (ose*owicz @tough7oveforx)h@G+,?%GuireI agree /ny thoughts espe%ially for ppl at the bottom of the pyramidD anyone workingon thatD#C.HC@GailZahtz@lalamarwoo

Global Down Syndrome @G+,-oundation&hGlobal has put together #+ownsyndromemedi%al %are %enters a%ross L, athttp!""bitly"HXt'L) #CPHC@gailzahtz

Gail Zahtz @GailZahtz)h1e0re down to (A minutes@G+,-oundationI know many people are asking$ what do you needD How %an we advo%ateD#CPHC

Global Down Syndrome @G+,-oundation)h9eed advo%a%y for more 9IH funding 9eed people to look at those w" #+ownsyndromeas e3ual =having human6 %ivil rights#C.HC@GailZahtz

Gail Zahtz @GailZahtz)hCan you talk more about your efforst for e3ual rights for #downsyndromeand how it relates to all#disabilities@G+,-oundation

Global Down Syndrome @G+,-oundation)hpls go to the human rights link on Global! a%%ess to resear%h SS6 med %are and edu% are things we haveto %ontinually fight for @GailZahtz

Stephanie$ @


11/12

ardra Si#ora @ardra,ikora)h@G+,?%Guire@GailZahtzFes .lease

Gail Zahtz @GailZahtz)h1ould be great if you %an share all w"me and I0ll post for all too4 m; @G+,?%Guire!+o%s will haveintake formM happy to share#CPHC

Dennis cG!ire @G+,?%Guire)h1ill do#CPHC@GailZahtz

Dennis cG!ire @G+,?%Guire)hJ;16 ,ome6 not all6 people w"#+ownsyndromehave more sleep apnea6 %elia%6 thyroid6 autism %ompared w" typi%alpopulation#CPHC@gailzahtz

Dennis cG!ire @G+,?%Guire)hJut are prote%ted from solid$tumor %an%ers6 %ardiovas%ular disease leading %ause of death in typi%al pop#+ownsyndrome#CPHC@gailzahtz

Gail Zahtz @GailZahtz)h-ound interesting for more resear%h for #%an%erm;@G+,?%Guire! Jut are prote%ted from solid$tumor%an%ers6 %ardiovas%ular disease #CPHC

Global Down Syndrome @G+,-oundation)hIn our work there is no bottom 5very parent is e3ual = powerful#CPHC@tough7oveforx@GailZahtz@lalamarwoo

)aby "hisperer @lalamarwoo)h@G+,-oundation@tough7oveforx@GailZahtzI am sure in your foundation there is no bottom6 but yes6there is a bottom6 and it is sad

Global Down Syndrome @G+,-oundation)h7et0s %hange that together#C.HC@lalamarwoo@tough7oveforx@GailZahtz

)aby "hisperer @lalamarwoo)h@G+,-oundation@tough7oveforx@GailZahtz#letsgo6would love to %ollaborate6 O

ichael (ose*owicz @tough7oveforx)h@lalamarwooe too @G+,-oundation@GailZahtz#C.CH#letsgo

Gail Zahtz @GailZahtz)h+on0t forget#CPHCin tweets so all %an see4 8; @lalamarwoo! @G+,-oundation@tough7oveforx@GailZahtz#letsgo6 would love to %ollaborate6 O

arc Lawn @businessgp)h


12/12

ardra Si#ora @ardra,ikora)h@G+,-oundation8ight I mean in +own syndrome spe%ifi%ally

Global Down Syndrome @G+,-oundation)h.lease %he%k out our Je Jeautiful Je Fourself -ashion ,how6 whi%h show%ases our %ommunity4http!""wwwbebeautifulbeyourselforg #CPHC

Sandy H!bbard @sandyhubbard)h;he wide range of experien%e6 life history6 advo%a%y6 professional ba%kgrounds of our #CPHC%ommunity enri%hes these

dis%ussions

Gail Zahtz @GailZahtz)h/nd anyone who doesn0t know me will see that I0m all about a%tion4#9o;ime-or;alk#CPHC@Jaby1hisperer&@G+,-oundation

arc Lawn @businessgp)hChange is something we do 1I;H people6 not ;< them 5du%ate = enable6 don0t le%ture = labour #CPHC

Global Down Syndrome @G+,-oundation)h/greed#CPHC@businessgp

Gail Zahtz @GailZahtz)hY) 8; @

#cphc chat transcript

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