It should not be this hard to save a child's life...

On February 9, 2023 the ACHDNC, a federal committee that makes recommendations to the Secretary of Health about newborn screening, voted on 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 newborn screening (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!

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.