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Langworthy and Hunter’s Hope Foundation cheer big win for newborns and families

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Congressman Langworthy Celebrates Historic Addition of Krabbe Disease to Newborn Screening Panel

Hunter’s Hope Foundation was formed in 1997 by Buffalo Bills legend Jim Kelly and is wife Jill

From the Office of Congressman Nick Langworthy, image from Hunter’s Hope Foundation

WASHINGTON, D.C. – Congressman Nick Langworthy (NY-23) issued the following statement after 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:

“Since I was elected, I’ve worked closely with Hunter’s Hope Foundation in advocating for the inclusion of Krabbe Disease in the recommended screening panel for newborn babies to catch this disease early,” said Congressman Langworthy. “This devastating condition can have life-altering consequences if not detected early, but today’s decision will allow for early intervention to spare families so much pain and suffering. I want to congratulate Hunter’s Hope for their persistent and successful advocacy efforts that led to this critical milestone. As we move forward, I’m dedicated to ensuring that our healthcare system continues to evolve with new research while prioritizing the health and safety of the most vulnerable in our community.”

Hunter’s Hope Founders Jim and Jill Kelly also issued a statement saying, “This is an amazing day! For over 20 years, we’ve worked, prayed, and waited, and today, January 30, 2024, the federal newborn screening committee finally voted to recommend Krabbe Disease to the federal Recommended Uniform Screening Panel. A decision that will lead to children’s lives being saved for generations to come. Newborn Screening for Krabbe disease is the difference between life and death. If Hunter had been screened for Krabbe at birth, he might still be here today. Every child with Krabbe deserves the chance to live!

They continued, “We are overwhelmed and so grateful to God and so many children and families who have fought tirelessly to make this victory a reality. Yet, there is still so much to be done, but this is a monumental triumph for the Hunter’s Hope community and every future child born in our country.”

In May 2023, Congressman Nick Langworthy penned a compelling 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 tied vote by the ACHDNC that had blocked the disease’s inclusion last year. Read the full letter here.

Hunter’s Hope was founded in 1997 by Pro Football Hall of Fame Member and former Buffalo Bills Quarterback Jim Kelly and his wife Jill after their infant son, Hunter (2/14/97—8/5/05), was diagnosed with Krabbe Leukodystrophy, an inherited fatal nervous system disease.

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

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