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September 19, 2013

Kelly, Schumer team up for newborn testing

Lockport Union-Sun & Journal — It’s not Kelly to Reed, but the Kelly to Schumer connection is working toward something more important than winning football games.

Former Buffalo Bills and Hall of Fame quarterback Jim Kelly and U.S. Sen. Charles Schumer launched their fight for passage for the Newborn Screening Saves Lives Reauthorization Act of 2013. The legislation would extend federal funding and expand newborn testing for diseases, especially ones that could be fatal if not diagnosed and treated early.

The legislation ensures federal funding so newborns can receive a blood test for fatal diseases that, if caught early, can be diagnosed and treated with a greater chance of success. If the bill is not reauthorized by Sept. 30, the federal funding for newborn screenings could end, Schumer said.

“The title of this bill tells all,” he said.

Last week, Rep. Chris Collins, R-Clarence, held a House of Representatives briefing on the Act with Kelly. Collins co-hosted the briefing with Rep. Lucille Roybal-Allard, D-Calif., who is the congressional sponsor of the legislation.

“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.”

Kelly isn’t just known for what he’s done on the field but off it as well with his work for Hunter’s Hope. The organization was established to get out information, build support and aid research with respect to Krabbe Disease and related Leukodystrophies. The group works to broaden public awareness for such diseases so early detection and treatment is possible.

Kelly’s son Hunter died at 8-years-old in 2005 from a fatal genetic disease that, if caught early, can be treated. Kelly and his wife Jill became advocates for newborn testing when his son was diagnosed with Krabbe Leukodystrophy.

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