It should not be this hard to save a child’s life…

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Take action here.

Message from Jill Kelly

Kelly Family

On February 9, 2023 the Advisory Committee on Heritable Disorders in Newborns & Children (ACHDNC,) a federal committee that makes recommendations to the Secretary of Health about newborn screening (NBS), voted whether to add Krabbe Disease to the Recommended Uniform Screening Panel (RUSP). Despite the irrefutable evidence, there was a tied vote. Therefore, Krabbe won’t be added to the RUSP. This decision will keep most states from adding Krabbe to their NBS panels. This also means that children with Krabbe will continue to suffer and die from a treatable disease when born in these states.

For almost two decades, the Hunter’s Hope Foundation has been fighting for NBS for Krabbe Disease. Krabbe is a truly horrible and deadly disease. If babies are not screened for the disease at birth through their state’s newborn screening program, they will be diagnosed too late for life saving treatment and typically die by the age of two. In their short lives, Krabbe robs these children of the ability to speak, walk, swallow, and virtually all voluntary movement while causing extreme complications and painful suffering.

The Secretary of Health makes the final decision on what diseases are included on the RUSP. Secretary Becerra has the power to change this.

Children with Krabbe Disease deserve to live.

You can help! Take action here.

Help us convince Secretary Becerra to right this terrible wrong and to do his part to make sure all U.S. children are screened for Krabbe Disease at birth.



When the federal Advisory Committee on Heritable Disorders for Newborns and Children (ACHDNC) was formed in 2006, they created the Recommended Uniform Screening Panel, also known as the RUSP

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Click here to learn about previously nominated conditions

Krabbe NBS and the ACHDNC

In 2007, Hunter’s Hope nominated Krabbe Disease for inclusion on the RUSP, and it was not recommended by the committee at a vote of 8 to 7. The committee identified 3 evidence gaps that needed to be filled. In the years that followed, Hunter’s Hope has teamed up with medical and scientific experts to ensure the gaps identified by the committee were filled and that these advancements were published in peer reviewed medical and scientific journals

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Click here to learn more about the ACHDNC

Public Comments

Click on the link below to read some of the Public Comments that have been made by families affected by Krabbe Disease. If you read them, you will understand the urgency of taking action to ensure every child is screened at birth for Krabbe Disease.

Click here to read Public Comments from Families