[Congressional Bills 113th Congress]
[From the U.S. Government Publishing Office]
[S. Res. 152 Introduced in Senate (IS)]

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 single-lobed 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;
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
    Resolved, That the Senate--
            (1) supports the designation of November 28, 2013, as 
        ``National Holoprosencephaly Awareness Day'';
            (2) urges Federal agencies--
                    (A) to continue supporting research to better 
                understand the causes of HPE;
                    (B) to provide better counseling to families with 
                the genetic forms of HPE; and
                    (C) to develop new ways to treat, and potentially 
                prevent, HPE; and
            (3) calls on the people of the United States, interested 
        groups, and affected persons--
                    (A) to promote awareness of HPE;
                    (B) to take an active role in the fight to end the 
                devastating effects of HPE; and
                    (C) to observe ``National Holoprosencephaly 
                Awareness Day'' with appropriate ceremonies and 
                activities.
                                 <all>