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Congressman Chris Collins, Jim Kelly hold briefing on Newborn Screening Saves Lives Reauthorization Act

by jmaloni

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Thu, Sep 19th 2013 07:00 am

Congressman Chris Collins, R-NY-27, and NFL Hall of Fame quarterback Jim Kelly of the Hunter's Hope Foundation held a briefing for members of Congress on the Newborn Screening Saves Lives Reauthorization Act (H.R. 1281) Wednesday.

"I am glad to support Jim Kelly and the Hunter's Hope Foundation in advocating for the importance of passing the Newborn Screening Saves Lives Reauthorization Act," Collins said. "This legislation, which I am a proud co-sponsor of, will positively impact families and children across the country by providing the necessary funding for screening, counseling and other services related to heritable disorders."

In 2008, Congress passed the Newborn Screening Saves Lives Act, which created national newborn screening guidelines and helped ensure comprehensive newborn screening in all states. Today, 44 states and the District of Columbia require screening of at least 29 of the 31 treatable core conditions.

The Newborn Screening Reauthorization Act extends and revises the newborn screening grant program through 2018. The current legislation expires at the end of this year. Before 2008, the number and quality of newborn screening tests varied from state to state. In 2007, only 10 states and the District of Columbia required infants to be screened for all recommended disorders.

Newborn screening is a state-based public health system that tests for serious developmental, genetic and metabolic disorders that are otherwise not apparent at birth. Under the newborn screening program, a baby receives a heel prick and a blood sample is sent to state health laboratories for testing. If diagnosed early, many of these disordered can be successfully treated or managed.

Kelly, who advocated for the passing of the Newborn Screening Saves Lives Act in 2008, started Hunter's Hope in 1997 with his wife, Jill, after their infant son Hunter was diagnosed with Krabbe Disease. The disease is one of 41 known degenerative neurological disorders called leukodystrophies, and it fatal when left untreated.

"For children like Hunter, early detection through newborn screening is crucial to preventing irreversible damage such as mental and physical disabilities, even death," Kelly said. "The Newborn Screening Saves Lives Act of 2008 enabled many states to more than triple the number of diseases screened for at birth, which is a huge improvement; but there is still more work to be done. We need our nation's leaders to come together to reauthorize this important bill so all of our kids have a chance for a healthy life - something Hunter never had."

Since its inception, Hunter's Hope has touched countless lives through increased awareness, investments in research advancement, and improves treatment options for families affect by leukodystrophies.

The Kelly family continues to advocate for early detection through newborn screening for diseases not otherwise clinically recognizable at birth.

Collins co-hosted the briefing with Congresswoman Lucille Roybal-Allard, CA-40, who is the congressional sponsor of the legislation.

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