,,iii  #aacth ,,congress  #ast ,session 
,s4 ,,res4 #aeb  ,,in ,,the ,,senate    
,,of ,,the ,,united ,,states  ,may #bb1 
#bjac ,mr4 ,cowan submitted the         
following resolution2 which was referred
 to the ,committee on ,health1          
,education1 ,labor1 and ,pensions       
,,resolution  ,designating ,november    
#bh1 #bjac1 as ,national                
,holoprosencephaly ,awareness ,day to   
increase awareness and education of the 
disorder4  ,whereas ,holoprosencephaly  
7commonly known as ,,hpe7 is a birth    
defect of the brain in which the        
prosencephalon 7also known as the       
embryonic forebrain7 does not           
sufficiently develop into #b hemispheres
 resulting in a single-lobed brain      
structure and severe skull and facial   
defects2 ,whereas in most cases of      
,,hpe1 the malformations are so severe  
that babies die before birth2 ,whereas  
in less severe cases of ,,hpe1 babies   
are born with normal or near-normal     
brain development and facial deformities

 that may affect the eyes1 nose1 and    
upper lip2 ,whereas the #c              
classifications of ,,hpe that vary in   
severity and impairment to cognitive    
abilities are ,alobar 7in which the     
brain has not divided at all71          
,semilobar 7in which the hemispheres of 
the brain have somewhat divided71 and   
,lobar 7in which there is considerable  
evidence of separate brain hemispheres72
 ,whereas ,,hpe affects approximatley #a
 out of every #bej pregnancies during   
early embryo development1 with many of  
those pregnancies ending in miscarriage2
 ,whereas ,,hpe affects #a in           
#aj1jjj-bj1jjj live births2 ,whereas the
 prognosis for a child diagnosed with   
,,hpe depends on the severity of the    
brain and facial malformations and      
associated clinical complications1 with 
the most severely affected children     
living several months or years and the  
least affected children living a normal 
life span2 ,whereas there is no standard
 course of treatment for ,,hpe because  

treatment must be individualized to the 
unique degree of malformations of each  
child2 ,whereas the ,federal            
,government1 acting through the         
,national ,institutes of ,health and the
 ,national ,institute of ,neurological  
,disorders and ,strokes1 supports and   
conducts a wide range of research on    
normal brain development and recent     
research has identified specific genes  
that cause ,,hpe2 and ,whereas ,november
 #bh1 #bjac1 would be an appropriate day
 to designate as ,national              
,holoprosencephaly ,awareness ,day3     
,now1 therefore1 be it  ,that the       
,senate--  7#a7 supports the designation
 of ,november #bh1 #bjac1 as ,national  
,holoprosencephaly ,awareness ,day2     
7#b7 urges ,federal agencies--  7,a7 to 
continue supporting research to better  
understand the causes of ,,hpe2  7,b7 to
 provide better counseling to families  
with the genetic forms of ,,hpe2 and    
7,c7 to develop new ways to treat1 and  
potentially prevent1 ,,hpe2 and  7#c7   

calls on the people of the ,united      
,states1 interested groups1 and affected
 persons--  7,a7 to promote awareness of
 ,,hpe2  7,b7 to take an active role in 
the fight to end the devastating effects
 of ,,hpe2 and  7,c7 to observe         
,national ,holoprosencephaly ,awareness 
,day with appropriate ceremonies and    
activities4