III 

113TH CONGRESS 

1ST SESSION S. RES. 152 

Designating November 28, 2013, as ‘‘National Holoprosencephaly Awareness 

Day’’ to increase awareness and education of the disorder. 

IN THE SENATE OF THE UNITED STATES 

MAY 22, 2013 

Mr. COWAN submitted the following resolution; which was referred to the 

Committee on Health, Education, Labor, and Pensions 

RESOLUTION 

Designating November 28, 2013, as ‘‘National 

Holoprosencephaly Awareness Day’’ to increase awareness and education of the disorder. 

Whereas Holoprosencephaly (commonly known as ‘‘HPE’’) is 

a birth defect of the brain in which the prosencephalon 

(also known as the ‘‘embryonic forebrain’’) does not sufficiently develop into 2 hemispheres resulting in a singlelobed brain structure and severe skull and facial defects; 

Whereas in most cases of HPE, the malformations are so severe that babies die before birth; 

Whereas in less severe cases of HPE, babies are born with 

normal or near-normal brain development and facial deformities that may affect the eyes, nose, and upper lip; 


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•SRES 152 IS 

Whereas the 3 classifications of HPE that vary in severity 

and impairment to cognitive abilities are Alobar (in which 

the brain has not divided at all), Semilobar (in which the 

hemispheres of the brain have somewhat divided), and 

Lobar (in which there is considerable evidence of separate 

brain hemispheres); 

Whereas HPE affects approximatley 1 out of every 250 pregnancies during early embryo development, with many of 

those pregnancies ending in miscarriage; 

Whereas HPE affects 1 in 10,000–20,000 live births; 

Whereas the prognosis for a child diagnosed with HPE depends on the severity of the brain and facial malformations and associated clinical complications, with the most 

severely affected children living several months or years 

and the least affected children living a normal life span; 

Whereas there is no standard course of treatment for HPE 

because treatment must be individualized to the unique 

degree of malformations of each child; 

Whereas the Federal Government, acting through the National Institutes of Health and the National Institute of 

Neurological Disorders and Strokes, supports and conducts a wide range of research on normal brain development and recent research has identified specific genes 

that cause HPE; and 

Whereas November 28, 2013, would be an appropriate day to 

designate as ‘‘National Holoprosencephaly Awareness 

Day’’: Now, therefore, be it 

1 Resolved, That the Senate— 


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•SRES 152 IS 

1 (1) supports the designation of November 28, 

2 2013, as ‘‘National Holoprosencephaly Awareness 

3 Day’’; 

4 (2) urges Federal agencies— 

5 (A) to continue supporting research to bet6 ter understand the causes of HPE; 

7 (B) to provide better counseling to families 

8 with the genetic forms of HPE; and 

9 (C) to develop new ways to treat, and po10 tentially prevent, HPE; and 

11 (3) calls on the people of the United States, in12 terested groups, and affected persons— 

13 (A) to promote awareness of HPE; 

14 (B) to take an active role in the fight to 

15 end the devastating effects of HPE; and 

16 (C) to observe ‘‘National Holoprosen17 cephaly Awareness Day’’ with appropriate cere18 monies and activities. 

Æ 


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