A resolution designating November 28, 2013, as "National Holoprosencephaly Awareness Day" to increase awareness and education of the disorder.

Bill: 113-sres-152
Sponsor: full_name: Sen. Cowan, William M. [D-MA]
Introduced: 2013-05-22
Policy area: Health
Subjects: Birth defects

Commemorative events and holidays

Health promotion and preventive care

Medical research

Neurological disorders
Latest action: action_date: 2013-05-22
text: Referred to the Committee on Health, Education, Labor, and Pensions. (text of measure as introduced: CR S3767)

Summaries:
action_date: 2013-05-22
action_desc: Introduced in Senate
text: <p>Expresses support for the designation of November 28, 2013, as National Holoprosencephaly Awareness Day.</p> <p>Urges federal agencies to: (1) continue supporting research to better understand the causes of holoprosencephaly (HPE); (2) provide better counseling to families with the genetic forms of HPE; and (3) develop new ways to treat, and potentially prevent, HPE.</p> <p>Calls on the people of the United States, interested groups, and affected persons to promote awareness of HPE and to take an active role in the fight to end its devastating effects.</p>

tv_txt: III 113th CONGRESS 1st Session S. RES. 152 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

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.