Hall of Fame quarterback Jim Kelly, formerly of the Buffalo Bills, will speak Wednesday on Capitol Hill urging legislators to support enhanced newborn screening.
He will speak on behalf of the Newborn Screening Saves Lives Reauthorization Act, a bill that supports the advancement of newborn screening programs nationwide. He's advocated for newborn screening since his son Hunter was diagnosed with Krabbe Disease, which can now be screened for at birth. Hunter died in August 2005.
“Like any dad, I had big plans for my son. None of those plans included Krabbe. When Hunter was diagnosed with the disease, we were told there was no treatment, no cure, and that Hunter wouldn’t live pass his second birthday. Although Hunter defied all expectations by living to be 8 ½ years old, he suffered every day of his life," Kelly said.
Kelly and his wife Jill founded the Hunter’s Hope Foundation in their son’s honor to support families affected by Krabbe and other diseases. The foundation also advocates for newborn screening for Krabbe and other disorders. The only available treatment for Krabbe must be given before symptoms surface. That requires early diagnosis via newborn screening.
Kelly ask congressional representatives to approve the bill.
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