[Congressional Record (Bound Edition), Volume 159 (2013), Part 5]
[Senate]
[Pages 7454-7455]
[From the U.S. Government Publishing Office, www.gpo.gov]




                         SUBMITTED RESOLUTIONS

                                 ______
                                 

  SENATE RESOLUTION 152--DESIGNATING NOVEMBER 28, 2013, AS ``NATIONAL 
 HOLOPROSENCEPHALY AWARENESS DAY'' TO INCREASE AWARENESS AND EDUCATION 
                            OF THE DISORDER

  Mr. COWAN submitted the following resolution; which was referred to 
the Committee on Health, Education, Labor, and Pensions:

                              S. Res. 152

       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.

  Mr. COWAN. Mr. President, I would like to take the opportunity to 
discuss a rare birth defect of the brain, known as holoprosencephaly or 
HPE.
  I became aware of this rare disorder through the outreach of my 
constituent, Angel Marie Kelley from Bellingham, MA. Angel has a child 
living with HPE and has become a resource to others in her community 
who are touched by this disorder.
  HPE occurs during the first few weeks of a pregnancy when the fetal 
brain does not sufficiently divide into two hemispheres, resulting in 
severe skull and facial defects. In most cases of HPE, the 
malformations are so severe that babies die before birth. In less 
severe cases, babies are born with normal or near-normal brain 
development and facial deformities that may affect the eyes, nose, and 
upper lip.
  HPE affects about 1 out of every 250 pregnancies during early embryo 
development, with many of these pregnancies ending in miscarriage. The 
disorder affects between 1 in 10,000 to 1 in 20,000 live births.
  There is no cure or standard course of treatment for HPE. The 
prognosis for a child diagnosed with the disorder depends on the 
severity of the brain and facial malformations and associated clinical 
complications. The most severely affected children could live several 
months or years and the least affected children are capable of 
achieving a normal life span. Treatment is symptomatic and supportive 
and must be individualized to each child's unique degree of 
malformations.

[[Page 7455]]

  I would like to recognize the ongoing work of the Federal Government 
through the National Institutes of Health, NIH, and the National 
Institute of Neurological Disorders and Strokes, NINDS, on HPE. These 
agencies support and conduct a wide range of innovative and promising 
research on HPE--recently identifying the specific genes that cause 
HPE.
  I am submitting this resolution today to designate November 28, 2013 
as National Holoprosencephaly Awareness Day. This resolution urges 
Federal agencies to support HPE research, to provide better counseling 
to families with the genetic forms of HPE, and to develop new ways to 
treat, and potentially prevent this disorder. It also calls on the 
people of the United States to promote awareness of this birth defect 
and to observe National Holoprosencephaly Awareness Day with 
appropriate ceremonies and activities.
  I look forward to working with my colleagues in the Senate to pass 
this important resolution.

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