,i  #aaf? ,,congress  #b;d ,session  ,h4
 ,r4 #faff  ,,9 ,,! ,,h\se ,,(          
,,repres5tatives  ,m>* #aj1 #bjbj,mr4   
,kim 7= himself & ,mr4 ,b>r7 introduc$ !
 foll[+ bill2 :i* 0 ref]r$ to !         
,committee on ,en]gy & ,comm]ce  ,a     
,,bill  ,to am5d ! ,public ,heal?       
,s]vice ,act to au?orize & support !    
creation & dissem9ation ( c>diomyopa?y  
education1 aw>5ess1 & risk assessm5t    
mat]ials & res\rces to id5tify m at-risk
 families1 to au?orize rese>* &         
surveillance activities relat+ to       
c>diomyopa?y1 & = o!r purposes4  #a4    
,%ort title ,?is ,act may be cit$ z !   
,c>diomyopa?y ,heal? ,education1        
,aw>5ess1 ,rese>*1 & ,tra9+ 9 ! ,s*ools 
,act ( #bjbj or ! ,,he>ts ,act ( #bjbj4 
#b4 ,mat]ials & res\rces to increase    
education & aw>5ess ( c>diomyopa?y among
 s*ool adm9i/rators1 educators1 &       
families ,"p ,p ( title ,,iii ( !       
,public ,heal? ,s]vice ,act 7#db        
,u4,s4,c4 #bhj;g et seq47 is am5d$ by   
add+ at ! end ! foll[+ new section3     

#cii,v-#g4 ,mat]ials & res\rces to      
increase education & aw>5ess (          
c>diomyopa?y among s*ool adm9i/rators1  
educators1 & families  7a7 ,mat]ials &  
res\rces ,n lat] ?an #ah mon?s aft] !   
date ( ! enactm5t ( ?is section1 !      
,secret>y1 9 conjunction ) ! ,director (
 ! ,c5t]s = ,disease ,control &         
,prev5tion 79 ?is section ref]r$ to z ! 
,director7 %all develop public education
 mat]ials & res\rces to be dissem9at$ to
 s*ool adm9i/rators1 educators1 s*ool   
heal? pr(essionals1 coa*es1 families1   
gu>dians1 c>egiv]s1 & o!r appropriate   
individuals4 ,! mat]ials & res\rces %all
 include-- 7#a7 backgr\nd in=mation to  
increase education & aw>5ess (          
c>diomyopa?y among s*ool adm9i/rators1  
educators1 & families2  7#b7 guidel9es  
reg>d+ ! placem5t ( automat$ ext]nal    
defibrillators 9 s*ools1 e>ly *ildhood  
education programs1 & *ild c>e c5t]s2   
7#c7 tra9+ in=mation on automat$ ext]nal
 defibrillators & c>diopulmon>y         
resuscitation2 &  7#d7 recomm5dations = 

h[ s*ools1 e>ly *ildhood education      
programs1 & *ild c>e c5t]s c develop &  
implem5t a c>diac em]g5cy response plan4
  7b7 ,dissem9ation ( mat]ials &        
res\rces ,n lat] ?an #cj mon?s aft] !   
date ( ! enactm5t ( ?is section1 !      
,secret>y1 ?r\gh ! ,director1 %all      
dissem9ate ! mat]ials & res\rces        
develop$ "u subsection 7a7 9 accordance 
) ! foll[+3 7#a7 ,di/ribution by ,/ate  
educational ag5cies ,! ,secret>y %all   
make available su* mat]ials & res\rces  
to ,/ate educational ag5cies to         
di/ribute-- 7,a7 to s*ool adm9i/rators1 
educators1 s*ool heal? pr(essionals1    
coa*es1 families1 gu>dians1 c>egiv]s1 & 
o!r appropriate individuals1 !          
c>diomyopa?y education & aw>5ess        
mat]ials & res\rces develop$ "u         
subsection 7a77#a72  7,b7 to p>5ts1     
gu>dians1 or o!r c>egiv]s1 ! risk       
assessm5t = individuals ) or at risk =  
c>diomyopa?y develop$ pursuant to       
section #cii,v-#h7;b77#a72 &  7,c7 to   
s*ool adm9i/rators1 educators1 s*ool    

heal? pr(essionals1 & coa*es-- 7i7 !    
guidel9es describ$ 9 subsection 7a77#b72
  7ii7 ! tra9+ in=mation describ$ 9     
subsection 7a77#c72 &  7iii7 !          
recomm5dations describ$ 9 subsection    
7a77#d74  7#b7 ,dissem9ation to heal?   
dep>tm5ts & pr(essionals ,! ,secret>y   
%all make available ! mat]ials &        
res\rces develop$ "u subsection 7a7 to  
,/ate & local heal? dep>tm5ts1          
p$iatricians1 hospitals1 & o!r heal?    
pr(essionals1 su* z nurses & fir/       
respond]s4  7#c7 ,po/+ on website  7,a7 
,,cdc  7i7 ,9 g5]al ,! ,secret>y1 ?r\gh 
! ,director1 %all po/ ! mat]ials &      
res\rces develop$ "u subsection 7a7 on !
 public int]net website ( ! ,c5t]s =    
,disease ,control & ,prev5tion4  7ii7   
,additional in=mation ,! ,director is   
enc\rag$ to ma9ta9 on su* public int]net
 website su* additional in=mation reg>d+
 c>diomyopa?y z deem$ appropriate by !  
,director4  7,b7 ,/ate educational      
ag5cies ,/ate educational ag5cies are   
enc\rag$ to create public int]net       

webpages d$icat$ to c>diomyopa?y & po/ !
 mat]ials & res\rces develop$ "u        
subsection 7a7 on su* webpages4  7c7    
,def9itions ,9 ?is section3 7#a7 ,! t]m 
s*ool adm9i/rator means a pr9cipal1     
director1 manag]1 or o!r sup]visor or   
lead] )9 an elem5t>y s*ool1 second>y    
s*ool1 ,/ate-bas$ e>ly *ildhood         
education program1 or *ild c>e c5t]4    
7#b7 ,! t]m s*ool heal? pr(essional     
means a heal? pr(essional s]v+ at an    
elem5t>y s*ool1 second>y s*ool1         
,/ate-bas$ e>ly *ildhood education      
program1 or *ild c>e c5t]4  7#c7 ,! t]ms
 e>ly *ildhood education program1       
elem5t>y s*ool1 & second>y s*ool h !    
mean+s giv5 to ^? t]ms 9 section #haja (
 ! ,elem5t>y & ,second>y ,education ,act
 ( #aife4  7d7 ,au?orization (          
appropriations ,= c>ry+ out ?is section 
& section #cii,v-#h1 !re is au?oriz$ to 
be appropriat$ #a1jjj1jjj = ea* ( fiscal
 ye>s #bjba ?r\gh #bjbe4  4  #c4 ,rese>*
 & surveillance activities relat+ to    
c>diomyopa?y  7a7 ,,cdc rese>* &        

surveillance ,"p ,p ( title ,,iii ( !   
,public ,heal? ,s]vice ,act 7#db        
,u4,s4,c4 #bhj;g et seq471 z am5d$ by   
section #b1 is fur!r am5d$ by add+ at ! 
end ! foll[+ new section3  #cii,v-#h4   
,rese>* & surveillance activities relat+
 to c>diomyopa?y  7a7 ,reports on ,,cdc 
national c>diomyopa?y surveillance      
rese>* activities  7#a7 ,initial report 
,n lat] ?an ,june #a1 #bjba1 !          
,secret>y1 act+ ?r\gh ! ,director ( !   
,c5t]s = ,disease ,control & ,prev5tion1
 %all submit to ,congress an initial    
report on f9d+s & data g5]at$ f         
surveillance & rese>* activities        
conduct$ by ! ,c5t]s = ,disease ,control
 & ,prev5tion to improve ! und]/&+ ( !  
preval5ce & epidemiology ( c>diomyopa?y 
across ! lifespan1 f bir? to adul?ood1 )
 p>ticul> int]e/ 9 ! foll[+3 7,a7 ,!    
heal? c>e co/s1 utilization1 & natural  
hi/ory ( individuals ) c>diomyopa?y1 9  
bo? ! p$iatric & adult population4  7,b7
 ,! numb] ( adults & *ildr5 affect$ by  
c>diomyopa?y1 z well z age-specific     

mortality4  7#b7 ,f9al report ,n lat]   
?an ,janu>y #a1 #bjbf1 ! ,secret>y1 act+
 ?r\gh ! ,director ( ! ,c5t]s = ,disease
 ,control & ,prev5tion1 %all submit to  
,congress a f9al report on ! cont5t     
describ$ 9 p>agraph 7#a74  7#c7 ,public 
access ,subject to p>agraph 7#d71 !     
reports submitt$ "u ?is subsection %all 
be made available to ! public4  7#d7    
,pati5t privacy ,! ,secret>y %all ensure
 t ?is subsection is c>ri$ out 9 a mann]
 t complies ) ! requirem5ts applicable  
to a cov]$ entity "u ! regulations      
promulgat$ pursuant to section #bfd7;c7 
( ! ,heal? ,insurance ,portability &    
,acc\ntability ,act ( #aiif4  7b7       
,improv+ risk assessm5ts = individuals )
 c>diomyopa?y  7#a7 ,9 g5]al ,!         
,secret>y1 act+ ?r\gh ! ,director ( !   
,c5t]s = ,disease ,control & ,prev5tion1
 %all develop & make publicly available 
a risk assessm5t = individuals ) or at  
risk = c>diomyopa?y4 ,su* risk assessm5t
 %all1 at a m9imum1 include ! foll[+3   
7,a7 ,backgr\nd in=mation ( ! preval5ce1

 incid5ce1 & heal? impact (             
c>diomyopa?y1 includ+ all =ms (         
c>diomyopa?y & _! effects on p$iatric1  
adolesc5t1 & adult individuals4  7,b7 ,a
 work%eet ) v>iables & conditions = an  
individual or heal? c>e provid] to use 9
 assess+ :e!r ! individual is at risk = 
c>diomyopa?y4  7,c7 ,a work%eet )       
v>iables & /ages ( progression = an     
individual or heal? c>e provid] to use 9
 assess+ :e!r & to :at ext5t            
c>diomyopa?y has progress$ 9 !          
individual4  7,d7 ,guidel9es on         
c>diomyopa?y scre5+s = individuals :o   
are at risk =1 or h a family hi/ory (1  
c>diomyopa?y4  7#b7 ,/akehold] ,input ,9
 c>ry+ out p>agraph 7#a71 ! ,director ( 
! ,c5t]s = ,disease ,control &          
,prev5tion %all seek input f ext]nal    
/akehold]s includ+-- 7,a7 repres5tatives
 f national pati5t advocacy             
organizations exp]t 9 all =ms (         
c>diomyopa?y2  7,b7 repres5tatives f    
m$ical pr(essional societies t          
specialize 9 ! c>e ( adults & p$iatrics 

) c>diomyopa?y2 &  7,c7 repres5tatives f
 o!r relevant ,f$]al ag5cies4  7c7      
,c>diomyopa?y def9$ ,= purposes ( ?is   
section1 ! t]m c>diomyopa?y means a he>t
 disease t affects ! he>t's muscle      
7myoc>dium7-- 7#a7 ! symptoms ( :i* may 
v>y f case to case1 includ+-- 7,a7 cases
 9 :i* no symptoms are pres5t           
7asymptomatic72 &  7,b7 cases 9 :i* !re 
are symptoms ( a progressive condition t
 may result f an impair$ ability ( !    
he>t to pump blood1 su* z fatigue1      
irregul> he>tbeats 7arrhy?mia71 he>t    
failure1 &1 pot5tially1 sudd5 c>diac    
dea?2 &  7#b7 ! recogniz$ types ( :i*   
include dilat$1 hyp]trophic1 re/rictive1
 arrhy?mog5ic "r v5tricul> dysplasia1 & 
left v5tricul> non-compaction4  4  7b7  
,f$]al work+ gr\p  7#a7 ,9 g5]al ,n lat]
 ?an "o ye> aft] ! date ( ! enactm5t (  
?is ,act1 ! ,secret>y ( ,heal? & ,human 
,s]vices %all conv5e an int]discipl9>y  
work+ gr\p = ! purpose ( exp&+          
c>diomyopa?y rese>*4  7#b7 ,duties ,!   
work+ gr\p %all-- 7,a7 develop a rese>* 

/rategy to address ! gaps 9 k on !      
molecul> & g5etic causes ( c>diomyopa?y 
9 *ildr52  7,b7 id5tify approa*es t c\ld
 result 9 ! developm5t ( prev5tive &    
disease-direct$ !rapies specific to     
p$iatric c>diomyopa?ies & he>t failure2 
&  7,c7 explore novel cl9ical trial     
me?odologies & end po9ts 9 an ef=t to   
optimize successful completion ( cl9ical
 trials 9 ?is r>e pati5t population4    
7#c7 ,memb]%ip ,! ,secret>y %all appo9t 
to ! work+ gr\p memb]s repres5t+ a range
 ( /akehold]s outside ( ! ,f$]al        
,gov]nm5t ) subject matt] exp]tise      
relat+ to c>diomyopa?y1 includ+-- 7,a7  
p$iatric c>diologi/s ) exp]tise 9 !     
diagnosis & treatm5t ( *ildr5 )         
c>diomyopa?ies & he>t failure & cl9ical 
trials relat$ to ! p$iatric population2 
7,b7 g5etici/s ) exp]tise 9 p$iatric    
c>diomyopa?y & he>t failure2  7,c7      
c>diovascul> molecul> biologi/s2  7,d7  
ph>macologi/s2  7,e7 rese>* sci5ti/s )  
exp]tise 9 c>diomyopa?y & he>t failure2 
&  7,f7 o!r /akehold]s ) relevant       

exp]tise1 z det]m9$ by ! ,secret>y4     
7#d7 ,report to ,congress ,n lat] ?an #b
 ye>s aft] ! date ( ! enactm5t ( ?is    
,act1 ! ,work+ ,gr\p %all publi% &      
submit to ,congress a report t conta9s--
 7,a7 a description ( ! activities ( !  
work+ gr\p2  7,b7 ! f9d+s &             
recomm5dations ( ! work+ gr\p ) respect 
to ea* ( ! topics describ$ 9 p>agraph   
7#b72 &  7,c7 ! recomm5dations ( ! work+
 gr\p relat+ to actions t ,f$]al ag5cies
 & ,congress c take to implem5t !       
recomm5dations describ$ 9 subp>agraph   
7,b74  7#e7 ,no comp5sation ,a memb] ( !
 work+ gr\p %all s]ve )\t comp5sation4  
7#f7 ,t]m9ation ,! work+ gr\p %all      
t]m9ate on ! date on :i* ! work+ gr\p   
submits ! report "u p>agraph 7#d74  7#g7
 ,c>diomyopa?y def9$ ,= purposes ( ?is  
subsection1 ! t]m c>diomyopa?y means a  
he>t disease t affects ! he>t's muscle  
7myoc>dium7-- 7,a7 ! symptoms ( :i* may 
v>y f case to case1 includ+-- 7i7 cases 
9 :i* no symptoms are pres5t            
7asymptomatic72 &  7ii7 cases 9 :i* !re 

are symptoms ( a progressive condition t
 may result f an impair$ ability ( !    
he>t to pump blood1 su* z fatigue1      
irregul> he>tbeats 7arrhy?mia71 he>t    
failure1 &1 pot5tially1 sudd5 c>diac    
dea?2 &  7,b7 ! recogniz$ types ( :i*   
include dilat$1 hyp]trophic1 re/rictive1
 arrhy?mog5ic "r v5tricul> dysplasia1 & 
left v5tricul> non-compaction4