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Congressman Nick Langworthy Celebrates Final Approval of Krabbe Disease Screening as Federal Standard for Newborns

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A partnership with the Jim Kelly Family and Hunter’s Hope Foundation creates new standard

From the Office of Congressman Nick Langworthy,

WASHINGTON, D.C. – Today, Congressman Nick Langworthy announced that the Department of Health and Human Services issued a final approval for the addition of Krabbe Disease to the Recommended Uniform Screening Panel (RUSP) for newborns.

“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 Langworthy. “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.”

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“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.”

In May 2023, Congressman Nick Langworthy penned a letter to HHS Secretary Xavier Becerra, urging a reconsideration of the decision to include Krabbe Disease in the newborn screening panel. This call for action came in response to a tie vote by the ACHDNC that had blocked the disease’s inclusion last year. Read the full letter here.

In January 2024, the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) under the U.S. Department of Health and Human Services (HHS) voted to add Krabbe Disease to their Recommended Uniform Screening Panel (RUSP) for newborns.

The final letter issued by the Secretary of Health and Human Services can be found here.

Congressman Nick Langworthy represents the 23rd Congressional District of New York, including Allegany, Cattaraugus, Chautauqua, Chemung, Schuyler, Steuben Counties, and parts of Erie County. Visit langworthy.house.gov.

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