BUFFALO, N.Y. — Newborn babies get screen for illnesses right after birth and soon they could be screened for Krabbe Disease.
The Department of Health and Human Services gave final approval for Krabbe Disease to be recommended as part of the newborn screening panel.
Former Buffalo Bills' and NFL Hall of Famer Jim Kelly and his wife Jill Kelly brought public awareness to the disease after their son Hunter was born with the disease in 1997. Hunter passed away in 2005.
“The final decision to add Krabbe Disease to the standard recommended newborn screening panel means that families across the country will have a chance at early detection and intervention, saving their child’s life,” said Congressman Nick Langworthy (R) said in a release. “I’m proud to have been an advocate for this vital step alongside the Kelly family, Hunter’s Hope Foundation, and our community in Western New York that has been deeply touched by this disease. I commend the Department of Health and Human Services for issuing this significant final decision and thank the Advisory Committee on Heritable Disorders in Newborns and Children for their thorough review and recommendation. As our healthcare system continues to evolve with new research, we must ensure that we are doing what we can to protect our most vulnerable, and I have no doubt that this will save the lives of American children and spare families the unimaginable heartbreak that the Kelly family experienced.”
“When Hunter was diagnosed with Krabbe Disease in 1997, it was too late to help him. Newborn Screening for Krabbe gives children like Hunter the chance for lifesaving treatment to stop the progression of this horrible disease,” said Jacque Waggoner, Hunter’s Hope CEO and grandmother of Hunter Kelly. “We're deeply grateful that Krabbe Disease is finally on the RUSP, which removes a huge barrier in our state advocacy efforts for Krabbe NBS. We will continue to fight until every U.S. child is screened for Krabbe Disease at birth and thank Congressman Langworthy and the many others who have come alongside us in our efforts to save children's lives.”
For more information on Krabbe Disease: https://www.huntershope.org/
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