Gail Zahtz @GailZahtz Info about the link between #downsyndrome and #alzheimers @toughlovefox @CHope urray http!

""www#globaldownsyndrome#org"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 @walkersvillemom about the week"%hat"topi%s http!""walkersvillemom#weebly#%om"("post"&'()"(("on$fa%ing$my$fears$with$a$little$help$from$my$%yber$friends#html * Gail Zahtz @GailZahtz Here are all the arti%les we0ve done so far on #downsyndrome for #CPHC http!""demanddesign#net"%ategory"reviews"%ommunities"down$syndrome * %% Gail Zahtz @GailZahtz 1e0re on the hour$ please introdu%e yourselves$ we are an open %ommunity$ so anyone %an 2ump in 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 #89 from #9ew:ersey6 #Heatlh%are #;weet%hat #5nthusiast %he%king out Carpool Health4 #cphc :oin us4 #nurseup

Global Down Syndrome @G+,-oundation Global supports many #+ownsyndrome organizations# <ur uni3ue fo%us is resear%h = medi%al %are# http!""bit#ly"(a5>217 #CPHC

Gail Zahtz @GailZahtz Glad you %an 2oin us @G+,-oundation If you %an put in the different people who are here from your organization that would be great4 #CPHC

Dennis cG!ire @G+,? %Guire #@G+,-oundation %onsultant +r# #+ownsyndrome providing for health = well$being# #CPHC

%Guire6 &) yrs experien%e w" adults w"

ichelle Sie "hitten @ ,1?+s 5xe% +ir and Co$-ounder of @G+,-oundation6 mom of ('yo w" #+ownsyndrome6 former %able ;@ exe%# http!""bit#ly"I)A@B/ #CPHC

Sandy H!bbard @sandyhubbard 1el%ome to #CPHC $ I am your %o$host along with @GailZahtz $ our founder and fearless leader#

Gail Zahtz @GailZahtz Hi +ennis4 I1e have a lot of people interested in #mentalhealth for #downsyndrome and #%hroni%disease @G+,? %Guire .lease 2ump in #CPHC

Dennis cG!ire @G+,? %Guire @G+,-oundation %ombines resear%h = medi%al servi%es to provide best possible %are w" sustainable resour%es# #+ownsyndrome #CPHC @gailzahtz

Global Down Syndrome @G+,-oundation Global is founding donor of Crni% Institute for #+own,yndrome C leader in s%ientifi% resear%h benefiting people w" +s# #CPHC Gail Zahtz @GailZahtz Can you explain to those who don0t know how the funding relationship works with @G+,-oundation and other resear%hD examplesD #CPHC

Stephanie Holland @walkersvillemom @G+,-oundation ;hank you so mu%h for being here4 I0m :oshua w"+s### #CPHC

om to &E yr$old

Gail Zahtz@GailZahtz ;F @walkersvillemom for all you have been doing to promote @G+,-oundation #C.HC

Stephanie Holland @walkersvillemom @GailZahtz @G+,-oundation #C.HC

y pleasure4 ,< important to me and many in my position4

ardra Si#ora @ ardra,ikora #CPHC I have a &) F< son with +own syndrome#G@ ar%usmusi%alH /nxious to hear your resear%h and info today

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

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

Global Down Syndrome @G+,-oundation -unding from donors6 foundations6 events6 a%ademi% partners# 1eIre very grateful4 #CPHC

ichelle Sie "hitten @ ,1?+s Lnfortunately6 #/lzheimers is problemM est# up to A'N of people w" #+ownsyndrome will get early onset# #CPHC ardra Si#ora @ ardra,ikora @ ,1?+s @GailZahtz .lease %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" #+ownsyndrome w" loss of fun%tion do not have #/lzheimers but reversible %ondition #CPHC @gailzahtz Stephanie Holland @walkersvillemom @G+,? %Guire 8eallyDD444 8eversible howD /nd how do we know the differen%eD #C.HC ardra Si#ora @ ardra,ikora @G+,? %Guire @GailZahtz How do you find"diagnose the differen%eD between /lzheimers and reversible %onditionsD ardra Si#ora @ ardra,ikora @walkersvillemom @G+,? %Guire Feah6 what she said !H

Dennis cG!ire @G+,? %Guire Fou know differen%e w" good medi%al %are providersM reversible means treatable# ore to %ome# #C.HC @walkersvillemom @G+,? %Guire Stephanie Holland @walkersvillemom ,o hard for most of us to find4 8; @G+,? %Guire! Fou know differen%e w" good medi%al %are providersM #CPHC @G+,? %Guire Dennis cG!ire @G+,? %Guire How reversibleD ;hru med"behavioral treatments e#g# do% treats sleep apnea6 resolve lifestyle stressors #C.HC @walkersvillemom @G+,? %Guire

Gail Zahtz @GailZahtz 1hat are you hoping to a%%omplish @G+,? %Guire 1hat tie ins do you see that make #mentalhealth important for #downsyndrome #CPHC Global Down Syndrome @G+,-oundation Global establishing world$%lass #/lzheimers %enter w" subspe%ialty for adults w" #+ownsyndrome = /+# http!""bit#ly"(b/Ftm- #CPHC @gailzahtz

Stephanie$ @<h y:et Hoooooooooooorrraayyyyy4444 I0ve missed #CPHC ,<<< today$not travelingP

LCH4 Grateful I0m able to 2oin in

SP%NNPHR&C'

@,.I99?.H8 ;uning in for the #CPHC %hat4

Global Down Syndrome @G+,-oundation Goal is to provide best medi%al %are w" best out%ome for people w" #+ownsyndrome# -or adults6 that in%ludes #/lzheimers# #CPHC @gailzahtz

A!toimm!ne Gal @/utoimmuneGal hi #cphc# i0m a patient advo%ate = #autoimmune fighter# I %hroni%le my 2ourney at http!""www#autoimmungal#blogspot#%om # #s2ogrens #neuro

Sandy H!bbard @sandyhubbard ;his is not a spe%ialized dis%ussion# 8esear%hers dis%over medi%al %onne%tions to disparate %onditions all the time# @ery timely %hat4 #CPHC A!toimm!ne Gal @/utoimmuneGal @sandyhubbard that is the beauty of resear%h# 2ust like the dis%overy of antibioti%s was an a%%ident# Andrew Lopez, RN @nursefriendly @sandyhubbard #8esear%hers have a long history of finding answers to one problem while sear%hing for answers to another !H #%ph% A!toimm!ne Gal @/utoimmuneGal @sandyhubbard @nursefriendly %ompletely# many med breakthroughs r a%%idents #%ph% Gail Zahtz @GailZahtz F5,4 m; @sandyhubbard! ;his is not a spe%ialized dis%ussion# 8esear%hers dis%over medi%al %onne%tions to disparate %onditions often #CPHC

Sandy H!bbard @sandyhubbard How does one know if they are geneti%ally pre$disposed to #/lzheimers D #CPHC

Gail Zahtz @GailZahtz I had a fas%inating %onveration yesterday live and re%orded with +r .otter on these issues @sandyhubbard #C.HC Global Down Syndrome @G+,-oundation ,%ienitists believe people w" #+ownsyndrome are predisposed be%ause of ) %opies of /.. gene on %hromosome &(# #C.HC @sandyhubbard @gailzahtz (en Romnes @2enromnes(h @sandyhubbard @nursefriendly Jlood test# ) known genes for familial /lz6 where ea%h family member has A'N %han%e of /lz younger than E'yrs (en Romnes @2enromnes @sandyhubbard @nursefriendly ;here is /.<5 > gene whi%h in%reases risk &AN for late onset /lzheimer0s that %an be geneti%ally tested for too Sandy H!bbard @sandyhubbard @2enromnes @nursefriendly ;hanks6 :en4 @GailZahtz #C.HC

ardra Si#ora @ ardra,ikora #CPHC do you find any relationship between OhealthyO IB and early onset /lzheimers likelihoodD Gail Zahtz @GailZahtz I0ve learned so far is that A'N of all people at QA will have #alzheimers and the other half %aregiving #C.HC @ ardra,ikora @sandyhubbard ardra Si#ora @ ardra,ikora #@GailZahtz @sandyhubbard Jut is that A'N a%ross the board $ or have other fa%tors been identified as yetD #C.HC

Gail Zahtz @GailZahtz It0s a%ross the board$ though exer%ise and sensory %an stop #alzheimers or slow with #+, @ 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 see the #elderly trying to %are for the #elderly6 not a great situation# #%ph% ardra Si#ora @ ardra,ikora @nursefriendly @GailZahtz @sandyhubbard /lzheimers# ,he is mu%h harder to %are for than my son# y mother has

Andrew Lopez, RN @nursefriendly @ ardra,ikora @GailZahtz @sandyhubbard Can imagine6 seeing what I do in #nursinghomes6 #geriatri%s# Is a full$time 2ob# #%ph% Global Down Syndrome @G+,-oundation 9o %orrelation between healthy IB = #/lzheimers that we know of# #CPHC @gailzahtz

Sandy H!bbard @sandyhubbard 1e appre%iate the #/lzheimers resour%es pouring into #CPHC %hat today# Clearly there 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" #+ownsyndrome at ,ie Center! http!""bit#ly"I))FLR #CPHC @gailzahtz Andrew Lopez, RN @nursefriendly @G+,-oundation @GailZahtz 7ife is so mu%h easier when #parents = #%aregivers have a%%ess to #edu%ation = #resour%es !H #%ph% #mh Stephanie$ @<h y:et /bsolutely4444 #C.HC @nursefriendly @G+,-oundation @GailZahtz

ichele Desocio @+eso%io i%hele @G+,- :ust listen to radio show ##%onne%tion between +owns and /lz# @ery interesting #CPHC Gail Zahtz @GailZahtz&h ;hank for listening4 1e0re %overing all week4 Fou %an find more @+eso%io i%hele at http!""demanddesign#net"%ategory"reviews"%ommunities"down$syndrome * @G+,-oundation #CPHC Gail Zahtz @GailZahtz ;he numbers reported yesterday by +r .otter from @G+,-oundation show that A'$RAN of all people with #downsyndrome get #alzheimers #CPHC (en Romnes @2enromnes @GailZahtz @nursefriendly @G+,-oundation ,%ientists found the first familial /lzheimer0s gene on Chromosome &( $ /..# Clue was +owns

Gail Zahtz @GailZahtz It0s interesting$ per yesterday from @gdsfoundation the greatest %han%e of CL8I9G #alzheimers is from #downsyndrome resear%h #CPHC Global Down Syndrome @G+,-oundation @ery important path to %uring #/lzheimers is studying people w" #+ownsyndrome6 but not only path# #C.HC @GailZahtz Andrew Lopez, RN @nursefriendly @GailZahtz @G+,-oundation 1ith a many #/lzheimers as are out there6 anti%ipated6 you would think they would take noti%e# #%ph% Andrew Lopez, RN @nursefriendly @G+,-oundation @GailZahtz /gree6 best to explore different angles6 resear%h promising avenues to %ure6 prevention# #%ph%

Gail Zahtz @GailZahtz It0s really s%ary4 1e0re looking at over )' yrs$ and no S @nursefriendly no govt @G+,-oundation #C.HC

I77I<9 with #/lzheimers in next &'

ardra Si#ora @ ardra,ikora @nursefriendly @GailZahtz @G+,-oundation Jetter to avoid su%h a s%ary sub2e%t# 7ike how people used to whisper %an%er### Ignore and it will$ Stephanie$ @<h y:et 1hy don0t theyD +is%onne%ted %ommunities"providers"industries as we see in other se%torsD !G @nursefriendly @GailZahtz @G+,-oundation #C.HC Stephanie$ @<h y:et 1<14444 @ery alarmingP @GailZahtz @nursefriendly @G+,-oundation #C.HC

Gail Zahtz @GailZahtz -rom what I0m figuring it0s all about who yells the most$e#g# great advo%a%y$ need more @<h y:et @nursefriendly @G+,-oundation #C.HC Global Down Syndrome @G+,-oundation Good news is they are now# 1e r working w" @alsasso%iation = have grant program# http!""www#globaldownsyndrome#org"news$%ommunity"press$ releases$&"&'()$press$releases"alzheimers$asso%iation$global$down$syndrome$foundation$grants#C.HC * @<h y:et @nursefriendly @GailZahtz Stephanie$ @<h y:et Jingo444444 /lthough as we learn from"witness in this %ommunity @GailZahtz and w"/ndrew0s @nursefriendly work T %nt% @G+,-oundation #C.HC A!toimm!ne Gal @/utoimmuneGal @GailZahtz @<h y:et @nursefriendly @G+,-oundation and who yells with most %ompelling message and strategy4 #C.HC Stephanie$ @<h y:et any don0t like or want advo%a%y or %hange as then it may mean they have to do more work %ntd @GailZahtz @nursefriendly @G+,-oundation #C.HC Stephanie$ @<h y:et <r be a%%ountable and learn from others Us take their egos out of e3uationP @GailZahtz @nursefriendly @G+,-oundation #C.HC ichele Desocio @+eso%io i%hele @nursefriendly @GailZahtz @G+,-oundation whyD Is the 3uestion# How many more do we have to lose before they take noti%e #C.HC Gail Zahtz @GailZahtz 1e do need to make advo%a%y have more impa%t with less time$ a %all to %ongress %an help @<h y:et @nursefriendly @G+,-oundation #C.HC Andrew Lopez, RN @nursefriendly @ ardra,ikora @GailZahtz @G+,-oundation ;hat has worked out so well # # # #patients6 families must learn how to empower themselves# #%ph% Stephanie$ @<h y:et /lthough sadly this then leaves many out who %ould add lots of helpful infoP @/utoimmuneGal @GailZahtz @nursefriendly @G+,-oundation #C.HC Stephanie$ @<h y:et ;he ex%lusion we0re seeing"will %ontinue to see it dishearteningP !G @/utoimmuneGal @GailZahtz @nursefriendly @G+,-oundation #C.HC Andrew Lopez, RN @nursefriendly @<h y:et @GailZahtz @G+,-oundation Have a feeling #Jig.harma #funding priorities have mu%h to do with it# #%ph% Andrew Lopez, RN @nursefriendly @<h y:et @GailZahtz @G+,-oundation If you %an0t treat a %ondition with a high degree of profit6 #.harma resear%h dollars go elsewhere# #%ph% Stephanie$ @<h y:et It0s s%ary to see this %ontinue as they want si%kness and death ;< C<9;I9L5 as we all know @nursefriendly @GailZahtz @G+,-oundation #C.HC Stephanie$ @<h y:et ,i%kness$%hroni% illness$deathUs JIG profits for them as we all sadly knowP @nursefriendly @GailZahtz @G+,-oundation #C.HC

Andrew Lopez, RN @nursefriendly @<h y:et @GailZahtz @G+,-oundation 7ets fa%e it6 is mu%h more profitable to OtreatO a #disease over time6 than %ure it on%e# #%ph% Stephanie$ @<h y:et /ndrew @nursefriendly I truly hope you along w" @GailZahtz and @G+,-oundation and others will %ontinue to tea%h"lead and ,.5/K %ntd #C.HC Stephanie$ @<h y:et&h %ntdT and speak as well deserved %ompensated speakers to edu%ate on these important issuesP @nursefriendly @GailZahtz @G+,-oundation #C.HC Andrew Lopez, RN @nursefriendly @<h y:et @GailZahtz @G+,-oundation Have to wonder how many %ures for #diseases O9ever ,aw ;he 7ight of +ayO in lieu of profits #%ph% ichele Desocio @+eso%io i%hele&h @nursefriendly @<h y:et @GailZahtz @G+,-oundation /gee is the status 3uo too profitable# 1ould a %ure hurt the bottom lineD Stephanie$ @<h y:et&h 1e all understand this although look at the H<88I+ realities we are fa%ing every dayP @nursefriendly @GailZahtz @G+,-oundation #C.HC Andrew Lopez, RN @nursefriendly&h @+eso%io i%hele @<h y:et @GailZahtz @G+,-oundation 1ould wat%hing your diet6 fat intake eliminate need for the #,tatins6 a %ash %owD #%xph% Gail Zahtz @GailZahtz&h 5du%ation is K5F and we %an do more with less thanks to ,o e and te%h now @<h y:et @nursefriendly @G+,-oundation #C.HC Stephanie$ @<h y:et&h ,adly yes although there0s 7<<;;,,,, to OprofitO from im 157795,, alsoP @+eso%io i%hele @nursefriendly @GailZahtz @G+,-oundation #C.HC Global Down Syndrome @G+,-oundation <ur s%ientist +r# .otter0s numbers are staggering6 important to both #+ownsyndrome6 #/lzheimers %ommunities# #CPHC @gailzahtz

Gail Zahtz @GailZahtz 1e0re getting summaries up from the %onversations I know @walkersvillemom has some to share already #CPHC

Dennis cG!ire @G+,? %Guire /dults w" #+ownsyndrome have strengths6 weaknessesM goal is promote strengths = improve weaknesses# #CPHC @gailzahtz Gail Zahtz @GailZahtz How %an working on non$medi%al aspe%ts from mental health and others help strengthen any geneti% %ondition @G+,? %Guire #C.HC

Global Down Syndrome @G+,-oundation Global establishing world$%lass adult medi%al %are %enter6 programsM +r# %Guire key to endeavor# http!""bit#ly"(b/keom #CPHC @gailzahtz Stephanie Holland @walkersvillemom @G+,-oundation ,o glad there will be more spe%ialists4 1ish more people had a%%ess $ learned the differen%e living near @KennedyKrieger

ardra Si#ora @ ardra,ikora @G+,-oundation #CPHC 1hat is the adult to O%at%hO early onsetD

<,; Important sign to wat%h out for with #+,

Dennis cG!ire @G+,? %Guire)h ,hort$term memory %hanges are often best indi%ationM still need to rule out other %auses# #+ownsyndrome #C.HC @ ardra,ikora @gailzahtz Gail Zahtz @GailZahtz)h /s I0ve been learning$ we0re going to put together a list of early signs and early prevention @ ardra,ikora @G+,-oundation #C.HC

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)h How do you rule out %hanges when the brain of someone with #downsyndrome is the same as with #/lzheimers @G+,? %Guire @ ardra,ikora #C.HC Dennis cG!ire @G+,? %Guire)h 7ook for diff# providers that have sensitivity to the population in your lo%ality# #C.HC @ ardra,ikora @GailZahtz Global Down Syndrome @G+,-oundation)h 7ook for online resour%es and experts su%h as @G+,? %Guire are open to responding to health 3uestions# #C.HC @ ardra,ikora @GailZahtz Andrew Lopez, RN @nursefriendly)h @ ardra,ikora @G+,? %Guire @GailZahtz @G+,-oundation ,upport groups6 online dis%ussions6 like this one6 lo%ate do%tors knowledgeable# #%ph% Andrew Lopez, RN @nursefriendly)h @ ardra,ikora @G+,? %Guire @GailZahtz @G+,-oundation Four do%tors if at a loss6 will take noti%e if you find %redible resour%es# #%ph% Andrew Lopez, RN @nursefriendly)h @ ardra,ikora @G+,? %Guire @GailZahtz @G+,-oundation 7ike with #rarediseases #orphandiseases6 sometimes you need to edu%ate do%tors #%ph% Sandy H!bbard @sandyhubbard)h <nline %ommunity %an be lifesaver 8; @nursefriendly ,upport groups6 online dis%ussions6 like this one6 lo%ate do%tors knowledgeable# #%ph% Andrew Lopez, RN @nursefriendly)h @ ardra,ikora @G+,? %Guire @GailZahtz @G+,-oundation #+o%tors #nurses #health%areprofessionals are human6 may miss what isn0t %ommon# #%ph% ardra Si#ora @ ardra,ikora)h @nursefriendly @G+,? %Guire @GailZahtz @G+,-oundation <H How I know that4 ,eriously# Gail Zahtz @GailZahtz)h /bsolutely4 I think we L,; edu%ate providers @nursefriendly @ ardra,ikora @G+,? %Guire @G+,-oundation #C.HC A!toimm!ne Gal @/utoimmuneGal)h @nursefriendly agreed# hard to argue with %redible resear%h# hopefully will help u find another +r to help if need be# #C.HC Andrew Lopez, RN @nursefriendly)h @ ardra,ikora @G+,? %Guire @GailZahtz @G+,-oundation Common > rare pediatri% infe%tions to be missed by new do%s that only read about #%ph% Andrew Lopez, RN @nursefriendly)h @ ardra,ikora @G+,-oundation Fes6 it is so important to know OwhatO to look for6 the early warning signs# #%ph% Andrew Lopez, RN @nursefriendly)h @ ardra,ikora @G+,-oundation If you know what #8ed-lags to look out for6 you %an identify a problem6 seek help earlier# #%ph% ardra Si#ora @ ardra,ikora)h @nursefriendly @G+,-oundation Fes $ I0m glad to have a heads up# A!toimm!ne Gal @/utoimmuneGal)h @nursefriendly @ ardra,ikora @G+,? %Guire It %an sometimes even be worth it to email resear%hers to get more info abt others in field# #%ph% Sandy H!bbard @sandyhubbard)h ,uper idea4 T 8; @/utoimmuneGal It %an sometimes even be worth it to email resear%hers to get more info abt others in field# #%ph% Andrew Lopez, RN @nursefriendly&h @G+,-oundation @G+,? %Guire @ ardra,ikora @GailZahtz ;hey are out there$Ideally we %ould have a %learinghouse$listed #%urated sour%es# #%ph%

Stephanie Holland @walkersvillemom&h I learned yesterday that exer%ise = heart health are important### whi%h is a problem for many# #CPHC $ I need to do better in this area Global Down Syndrome @G+,-oundation)h /greed# #C.HC @walkersvillemom A!toimm!ne Gal @/utoimmuneGal)h @walkersvillemom definitely# improves many %onditions but diffi%ult to find safe regimen for many with #%hroni% illness# #%ph% Andrew Lopez, RN @nursefriendly)h @walkersvillemom /s a #9ation of #Cou%h.otatoes6 we0ve got a lot of work to do !G #%ph% ichelle Sie "hitten @ ,1?+s&h -or #+ownsyndrome6 as w" typi%al pop#6 studies show exer%ise6 nutrition = routine benefit ability of our %hildren = adults# #CPHC @GailZahtz Dennis cG!ire @G+,? %Guire&h ,hort$term memory %hanges are often best indi%ationM still need to rule out other %auses# #+ownsyndrome #CPHC @ ardra,ikora @gailzahtz Sandy H!bbard @sandyhubbard .arents6 Is it a privilege or burden to know your %hildren are GmoreH pre$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?+s I0ve been very inspired by your work$ %an you talk about your personal 2ourney to @G+,-oundation #C.HC ichelle Sie "hitten @ ,1?+s)h I make sure to follow /mer# /sso%# of .ed# guidelines for all my daughter0s %he%kups# http!""pediatri%s#aappubli%ations#org"%ontent"(&Q"&")V)#full#pdf * #C.HC @sandyhubbard ichelle Sie "hitten @ ,1?+s)h y ('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?+s while others don0t$ what made it a mission for youD #C.HC ichelle Sie "hitten @ ,1?+s)h It was sheer lu%k# y family and I had resour%es so I %ould work full$time on this* #C.HC @GailZahtz @ ,1?+s ichelle Sie "hitten @ ,1?+s)h 1e have )''W volunteers6 many parents6 who are e3ually important to what we do# I0m 2ust lu%ky# #C.HC @GailZahtz Gail Zahtz @GailZahtz)h Fes6 but there are many who have the resour%es who don0t %ommit themselves like you do$ @ ,1?+s #C.HC 1hat0s the differen%e do you thinkD Gail Zahtz @GailZahtz)h 1hat do your volunteers doD 1hat do you need more from our volunteersD #C.HC @ ,1?+s ichelle Sie "hitten @ ,1?+s)h I0m a workaholi% !H and I %ome from a long line of workaholi%s# #C.HC @GailZahtz ichelle Sie "hitten @ ,1?+s)h @olunteers organize silent au%tion6 assist w" +are to .lay sports programs6 man info booths6 partner for dan%es6 lots more# #C.HC @GailZahtz ichelle Sie "hitten @ ,1?+s)h Hoping to inspire others to %reate %enters = we %an provide blueprint# #+ownsyndrome #C.HC @lalamarwoo @sandyhubbard @GailZahtz

Stephanie Holland @walkersvillemom&h F5,44444444444444 8; @ ,1?+s! Hoping to inspire others to %reate %enters = we %an provide blueprint# #+ownsyndrome #CPHC Gail Zahtz @GailZahtz&h Fes too4 8; @walkersvillemom! F5,4 8; @ ,1?+s! Hoping to inspire others to %reate %enters = we %an provide blueprint# #+ownsyndrome #CPHC Gail Zahtz @GailZahtz)h I am sure that the Carpool will be happy to help you along the way4 ;alking to +r .otter6 I wanted to get out 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)h 1e wel%ome all of you to Colorado4 .lease do visit# @GailZahtz @ ,1?+s )aby "hisperer @lalamarwoo)h @ ,1?+s @sandyhubbard @GailZahtz its my life mission6 would be honored to help6 lots of pedi experien%e# ichelle Sie "hitten @ ,1?+s)h 1e0d be honored to have you# @lalamarwoo @sandyhubbard @GailZahtz

Gail Zahtz @GailZahtz&h 1e0ll make sure for any 3uestions that are not answered today that we have full follow$up posts and resour%es from #CPHC 44 @G+,-oundation Stephanie Holland @walkersvillemom)h @GailZahtz @G+,-oundation @sandyhubbard I0m so on that mission4

Dennis cG!ire @G+,? %Guire&h ake sure you ex%lude every other %ause then refer to #/lzheimers spe%ialist who %an evaluate #CPHC #GailZahtz #downsyndrome Dennis cG!ire @G+,? %Guire&h /greed# Jurden of %are is often on family# #CPHC @+eso%io i%hele @GailZahtz @ ardra,ikora @sandyhubbard

Stephanie Holland @walkersvillemom&h @+eso%io i%hele @GailZahtz @ ardra,ikora @sandyhubbard @G+,-oundation I0m so afraid we0ll both get early onset /+44 #CPHC ardra Si#ora @ ardra,ikora&h @walkersvillemom @G+,-oundation Is that an old studyD the one that us OFoung mothersO will get /lzheimersD Ghehe6 we0re young ,tephanieH Stephanie Holland @walkersvillemom&h @ ardra,ikora @G+,-oundation I know right4D ,aid we had A times the %han%e of getting it $ same time our guys did4 #C.HC ichele Desocio @+eso%io i%hele&h @walkersvillemom @GailZahtz @ ardra,ikora @sandyhubbard @G+,-oundation a valid %on%ern indeed ardra Si#ora @ ardra,ikora&h @walkersvillemom @G+,-oundation <F# 9ot an option# ust do more %rossword puzzles4

Gail Zahtz @GailZahtz)h I %an share some of what I0ve been learning thanks to what @G+,-oundation all they are doing = @alzasso%iation #CPHC Dennis cG!ire @G+,? %Guire&h ental health is even less addressed than medi%al health = our kids"adults need both# #CPHC @lalamarwoo @sandyhubbard @GailZahtz

ichael (ose*owicz @tough7oveforx)h @GailZahtz +o we think the new provisions about @G+,? %Guire @lalamarwoo

ental Health in /C/ will helpD #CPHC

Dennis cG!ire @G+,? %Guire)h we 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)h 1e0ll 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+,? %Guire I agree# /ny thoughts espe%ially for ppl at the bottom of the pyramidD anyone working on thatD #C.HC @GailZahtz @lalamarwoo Global Down Syndrome @G+,-oundation&h Global has put together #+ownsyndrome medi%al %are %enters a%ross L, at http!""bit#ly"HXt'L) #CPHC @gailzahtz

Gail Zahtz @GailZahtz)h 1e0re down to (A minutes @G+,-oundation I know many people are asking$ what do you needD How %an we advo%ateD #CPHC Global Down Syndrome @G+,-oundation)h 9eed advo%a%y for more 9IH funding# 9eed people to look at those w" #+ownsyndrome as e3ual = having human6 %ivil rights# #C.HC @GailZahtz Gail Zahtz @GailZahtz)h Can you talk more about your efforst for e3ual rights for #downsyndrome and how it relates to all #disabilities @G+,-oundation Global Down Syndrome @G+,-oundation)h pls go to the human rights link on Global! a%%ess to resear%h SS6 med %are and edu%# are things we have to %ontinually fight for @GailZahtz Stephanie$ @<h y:et)h /men times VVV billion4 8; @sandyhubbard! O9eed people to look at those w" #+ownsyndrome as e3ual = having human6 %ivil rights#O #CPHC Shawn +laherty @sflah)h /gree m;@G+,-oundation!go & human rights link on Global! a%%ess to resear%h6SS6med%are and ed# r things we have & %ontinually fight > #CPHC Gail Zahtz @GailZahtz)h +o you think there are more %ivil rights issues for #downsyndrome than other #disabilities If so whyD @G+,-oundation #CPHC Global Down Syndrome @G+,-oundation)h /bsolutely# (H #+ownsyndrome is easily identified by physi%al %hara%teristi%s &H .renatal testing )H 7a%k of fed funding #C.HC @GailZahtz Stephanie Holland @walkersvillemom)h @G+,-oundation great use of (>' %har# to tell su%h a %ompli%ated story4 I .85,,5+444 !H Stephanie Holland @walkersvillemom)h I+ in general yes4 I do###8; @GailZahtz! +o you think there are more %ivil rights issues for #downsyndrome @G+,-oundation #CPHC ardra Si#ora @ ardra,ikora)h #CPHC @G+,-oundation is there any sort of ObaselineO testing that is appropriate for young adults with +,D .re$signsD Dennis cG!ire @G+,? %Guire)h +o%s will have intake formM I0d be happy to share one with you# #CPHC @ ardra,ikora @gailzahtz

ardra Si#ora @ ardra,ikora)h @G+,? %Guire @GailZahtz Fes .lease# Gail Zahtz @GailZahtz)h 1ould be great if you %an share all w"me and I0ll post for all too4 m; @G+,? %Guire! +o%s will have intake formM happy to share# #CPHC Dennis cG!ire @G+,? %Guire)h 1ill do# #CPHC @GailZahtz

Dennis cG!ire @G+,? %Guire)h J;16 ,ome6 not all6 people w" #+ownsyndrome have more sleep apnea6 %elia%6 thyroid6 autism %ompared w" typi%al population# #CPHC @gailzahtz Dennis cG!ire @G+,? %Guire)h Jut are prote%ted from solid$tumor %an%ers6 %ardiovas%ular disease Gleading %ause of death in typi%al pop#H #+ownsyndrome #CPHC @gailzahtz Gail Zahtz @GailZahtz)h -ound interesting for more resear%h for #%an%er m; @G+,? %Guire! Jut are prote%ted from solid$tumor %an%ers6 %ardiovas%ular disease #CPHC Global Down Syndrome @G+,-oundation)h In our work there is no bottom# 5very parent is e3ual = powerful# #CPHC @tough7oveforx @GailZahtz @lalamarwoo )aby "hisperer @lalamarwoo)h @G+,-oundation @tough7oveforx @GailZahtz I am sure in your foundation there is no bottom6 but yes6 there is a bottom6 and it is sad###### Global Down Syndrome @G+,-oundation)h 7et0s %hange that together# #C.HC @lalamarwoo @tough7oveforx @GailZahtz )aby "hisperer @lalamarwoo)h @G+,-oundation @tough7oveforx @GailZahtz #letsgo6 would love to %ollaborate6 OH ichael (ose*owicz @tough7oveforx)h @lalamarwoo e too### @G+,-oundation @GailZahtz #C.CH #letsgo Gail Zahtz @GailZahtz)h +on0t forget #CPHC in tweets so all %an see4 8; @lalamarwoo! @G+,-oundation @tough7oveforx @GailZahtz #letsgo6 would love to %ollaborate6 OH arc Lawn @businessgp)h <kay so I seem to have missed #CPHC but what is itD Gail Zahtz @GailZahtz)h Ha4 1el%ome @businessgp Fou are never too late# 1e have a whole week every week by topi%s http!""demanddesign#net"talk$show"%oming * #CPHC arc Lawn @businessgp)h ,upport not suppress# 5n%ourage not entrap# #CPHC Gail Zahtz @GailZahtz)h /gree4 If we %ould follow the 1H< definition of #disability so mu%h better4 m; @businessgp! 5very being is e3ual6 it0s the lu%k #CPHC ardra Si#ora @ ardra,ikora)h #@G+,-oundation ;o be %lear6 at this time IB does not appear to be a fa%tor so mu%h as lifestyle in developing /lzheimersD #CPHC Global Down Syndrome @G+,-oundation)h 9o# ( link is tripli%ation of the /.. gene# #C.HC @ ardra,ikora

ardra Si#ora @ ardra,ikora)h @G+,-oundation 8ight# 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 %ommunity4 http!""www#bebeautifulbeyourself#org #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)h Change 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)h Y) 8; @<h y:et! /greed44 8; @businessgp! Change is something we do 1I;H people6 not ;< them# 5du%ate = enable6 don0t le%ture = labour# #CPHC Global Down Syndrome @G+,-oundation)h ;hank you6 @gailzahtz6 for %aring about people w" #+ownsyndrome and allowing us to dis%uss the link w" #/lzheimers# #CPHC Gail Zahtz @GailZahtz)h / pleasure4 ; @G+,-oundation! ;F Gail6 for %aring about people w" #+ownsyndrome and allowing us to dis%uss the link w" #/lzheimers# #CPHC Stephanie Holland @walkersvillemom)h and thanks again @G+,-oundation for all you do and taking the time to talk to us 44444 @gailzahtz #C.HC Global Down Syndrome @G+,-oundation)h ;hank you4 @walkersvillemom @gailzahtz

Gail Zahtz @GailZahtz)h 7et0s all thank our guests from @G+,-oundation and 2oin us all week http!""demanddesign#net"talk$show"%oming * and I0m sure ongoing4 #CPHC Sandy H!bbard @sandyhubbard)h ;rans%ript from today0s #CPHC %hat on %onne%tion between #downsyndrome and #/lzheimers plus info " resear%h TT http!""bit#ly"(b9G-sE Gail Zahtz @GailZahtz)h Fou know## I am always overwhelmed and humbled by the giving and support from the %arpool4 #CPHC %% @G+,-oundation