05.19.15

Hoeven, Heitkamp Introduce Senate Resolution Declaring May 19 "National Schizencephaly Awareness Day"

Resolution Raises Public Awareness for Rare Brain Disorder

WASHINGTON – Senators John Hoeven and Heidi Heitkamp today introduced a Senate Resolution designating May 19 as “National Schizencephaly Awareness Day.” The resolution helps to educate and raise awareness about Schizencephaly, a rare birth defect that causes developmental delays, delays in speech and language skills, limited mobility, paralysis, shorter lifespans and other symptoms. Schizencephaly is the second rarest brain malformation, with approximately 7,000 cases ever reported.

“Schizencephaly, although rare, is a life-altering brain disorder,” said Hoeven. “By increasing the public’s knowledge of the disorder, we can provide better education, research, diagnosis and treatment options for children born with this condition. This resolution is all about supporting individuals and families living with Schizencephaly.”

“Schizencephaly isn’t a disease you hear about every day, but with this resolution, we want to help raise awareness about it which will hopefully help lead to more support for research to address and cure it,” said Heitkamp. “For the families in North Dakota who have a loved one with Schizencephaly, know that we are supporting you and hopefully by working together to bring stronger attention to this disease, we can pave the way for new outcomes.”

The North Dakota senators learned about the rare brain disorder from a Bismarck family, and introduced the resolution in coordination with We are R.A.R.E., a nonprofit organization that advocates for individuals living with Schizencephaly and fetal stroke prevention. For more information on symptoms, detection and the causes, visit: http://wearerare.org/schizencephaly/.   

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