,,ii  #aac? ,,congress  #a/ ,session    
,s4 #cae  ,,9 ,,! ,,s5ate ,,( ,,!       
,,unit$ ,,/ates  ,febru>y #ac1 #bjac    
,ms4 ,klobu*> 7= h]self1 ,mr4 ,wick]1   
,mr4 ,s&]s1 ,ms4 ,coll9s1 ,mr4 ,m55dez1 
,mr4 ,isakson1 ,ms4 ,mikulski1 ,mr4     
,leahy1 ,mr4 ,laut5b]g1 & ,mr4 ,nelson7 
introduc$ ! foll[+ bill2 :i* 0 read     
twice & ref]r$ to ! ,committee on       
,heal?1 ,education1 ,labor1 & ,p5sions  
,a ,,bill  ,to reau?orize & ext5d !     
,paul ,d4 ,well/one ,muscul> ,dy/rophy  
,community ,assi/ance1 ,rese>*1 &       
,education ,am5dm5ts ( #bjjh4  #a4 ,%ort
 title ,?is ,act may be cit$ z ! ,paul  
,d4 ,well/one ,muscul> ,dy/rophy        
,community ,assi/ance1 ,rese>* &        
,education 7,,md-,,c>e7 ,am5dm5ts (     
#bjac4  #b4 ,initiative ?r\gh !         
,director ( ! ,national ,in/itutes (    
,heal? ,section #djd;,e ( ! ,public     
,heal? ,s]vice ,act 7#db ,u4,s4,c4      
#bhc;g7 is am5d$--  7#a7 9 subsection   
7a77#a7--  7,a7 by /rik+ ,muscoskeletal 
& ins]t+ ,musculoskeletal2 &  7,b7 by   

ins]t+ ,beck]1 myotonic1                
facioscapulohum]al muscul> dy/rophy     
7ref]r$ to 9 ?is section z ,,f%d71      
,cong5ital muscul> dy/rophy1            
,limb-girdle muscul> dy/rophy1 aft]     
,du*5ne12  7#b7 9 subsection 7b7--  7,a7
 9 p>agraph 7#b71 by ins]t+ c>diac &    
pulmon>y function1 aft] imag+1 g5etics12
 &  7,b7 9 p>agraph 7#c71 by ins]t+ &   
%>+ ( data aft] regul> communication2   
7#c7 9 subsection 7d7--  7,a7 9 p>agraph
 7#b7--  7i7 9 ! matt] prec$+           
subp>agraph 7,a71 by /rik+ #ae & ins]t+ 
#ah2 &  7ii7 9 subp>agraph 7,a71 by     
/rik+ *ildr5 ) muscul> dy/rophy1 su* z !
 ,dep>tm5t ( ,education & ins]t+ *ildr5 
& adults ) muscul> dy/rophy1 su* z !    
,dep>tm5t ( ,education1 ! ,social       
,security ,adm9i/ration1 ! ,unit$ ,/ates
 ,adm9i/ration = ,community ,liv+2 &    
7,b7 9 p>agraph 7#d77;,b71 by ins]t+ 1 &
 %all meet no less ?an two times p]     
cal5d> ye> be=e ! p]iod2  7#d7 9        
subsection 7e7--  7,a7 9 p>agraph 7#a7--
  7i7 9 ! matt] prec$+ subp>agraph 7,a71

 by /rik+ ?r\gh ! national rese>*       
in/itutes & ins]t+ ?r\gh ! repres5t$    
,f$]al ag5cies2 &  7ii7 9 subp>agraph   
7,a71 by /rik+ & rehabilitative issues1 
includ+ /udies ( ! impact ( su* diseases
 9 rural & und]s]v$ communities & ins]t+
 public res\rces1 & rehabilitative      
issues1 includ+ /udies ( ! impact ( su* 
diseases 9 rural & und]s]v$ communities1
 heal? economic /udies to demon/rate !  
co/-effectiv5ess ( provid+ indep5d5t    
liv+ res\rces & support to pati5ts )    
v>i\s =ms ( muscul> dy/rophy1 & /udies  
to det]m9e optimal cl9ical c>e          
int]v5tions = adults ) v>i\s =ms (      
muscul> dy/rophy2 &  7,b7 9 p>agraph    
7#b71 by add+ at ! end ! foll[+3  7,f7  
,! developm5t ( cl9ical int]v5tions to  
improve ! heal? ( adults ) v>i\s =ms (  
muscul> dy/rophy4  2 &  7#e7 9          
subsection 7g71 by /rik+ = ! v>i\s =ms (
 muscul> dy/rophy by prioritiz+ !       
a*ievem5t ( ! goals relat$ to ?is topic 
9 ! plan "u subsection 7e77#a7 & ins]t+ 
& %all1 n lat] ?an #f mon?s aft] ! date 

( enactm5t ( ! ,paul ,d4 ,well/one      
,muscul> ,dy/rophy ,community           
,assi/ance1 ,rese>* & ,education        
7,,md-,,c>e7 ,am5dm5ts ( #bjac1 9       
coord9ation ) appropriate ,f$]al        
ag5cies1 includ+ relevant (fices )9 !   
,food & ,drug ,adm9i/ration & support$  
by ! ,national ,in/itutes ( ,heal? &    
,dep>tm5t ( ,def5se1 develop a plan to  
exp$ite ! evaluation & approval ( em]g+ 
!rapies & p]sonaliz$ m$ic9es t h !      
pot5tial to decrease fatal disease      
progression across ! v>i\s =ms ( muscul>
 dy/rophy4  #c4 ,surveillance & rese>*  
reg>d+ muscul> dy/rophy ,section #cag,q 
( ! ,public ,heal? ,s]vice ,act 7#db    
,u4,s4,c4 #bdg;b-#ah7 is am5d$--  7#a7 9
 ! second s5t5ce ( subsection 7b71 by   
ins]t+ be=e ! p]iod ! foll[+3 & ensure t
 ! program captures data f diff]5t      
racial & e?nic populations1 & t su* data
 are made publicly available to         
inve/igators conduct+ public or private 
rese>* on muscul> dy/rophy2 &  7#b7 9   
subsection 7c71 by add+ at ! end !      

foll[+3 ,! ,secret>y %all also fo/]     
ongo+ engagem5t & collaboration betwe5 !
 surveillance program & c5t]s (         
excell5ce44  #d4 ,in=mation & education 
,section #e7;c7 ( ! ,muscul> ,dy/rophy  
,community ,assi/ance1 ,rese>* &        
,education ,am5dm5ts ( #bjja 7#db       
,u4,s4,c4 #bdg;b-#ai7;c77 is am5d$ by   
add+ at ! end ! foll[+3  7#d7 ,update & 
widely dissem9ate exi/+ ,du*5ne-,beck]  
muscul> dy/rophy c>e consid]ations =    
p$iatric pati5ts1 develop & widely      
dissem9ate ,du*5ne-,beck] muscul>       
dy/rophy c>e consid]ations = adult      
pati5ts1 & develop & widely dissem9ate  
acute c>e consid]ations = all muscul>   
dy/rophy populations4 ,! c>e            
consid]ations %\ld build ^u exi/+ ef=ts 
curr5tly und]way = cong5ital muscul>    
dy/rophy1 fascioscapulohum]al muscul>   
dy/rophy1 limb-girdle muscul> dy/rophy1 
& myotonic muscul> dy/rophy1 &          
incorporate /rategies specifically      
respond+ to ! f9d+s ( ! national        
transitions survey ( m9ority1 "y adult &

 adult communities ( muscul> dy/rophy   
pati5ts4  4