It should not be this hard to save a child’s life…
You can help! Take action here.
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.
Learn more here.
Indiana Governor Tom Holcomb with Joel, Andrea and Bryce Clausen as he signs Bryce’s Law to add Newborn Screening for Krabbe and other diseases.
Take Action for Newborn Screening
Hunter’s Hope advocates for newborn screening (NBS) for all possible disorders at birth, including Krabbe, ALD and similar disorders.
For diseases like Krabbe and ALD, they must be diagnosed early to save children’s lives. Therefore, it is critical all infants are screened for these diseases at birth.
Currently, New York, Missouri, Kentucky, Tennessee, Illinois, New Jersey, Ohio, Indiana, Pennsylvania, and Georgia are the only states that currently screen all newborns for Krabbe Disease. Ohio offers Krabbe newborn screening, but parents are given the option to “opt-out” so make sure to let your medical provider know you want your child screened for Krabbe at birth. Georgia began a three year pilot program for Krabbe NBS in September 2021, which will hopefully lead to a permanent program. New Mexico, Louisiana, and South Carolina have all passed laws to add Krabbe Newborn Screening with implementation dates varying by state.
Learn more about the most recent advancements in Krabbe Newborn Screening.
To find out what conditions your state screens for, visit Baby’s First Test.
Help us advocate for Expanded Newborn Screening in Every State. Contact us! We are here to help you advocate for change in your state. Email firstname.lastname@example.org for more information.
Send a letter to your legislator in support of newborn screening for diseases like Krabbe and ALD – click here.
Residents of the following states can support current Legislation for Krabbe Newborn Screening by clicking on your state below:
Newborn Screening for Krabbe - Ezra's Story
Ezra was born in Missouri. Because of newborn screening, he was diagnosed with Krabbe in his first weeks of life and underwent treatment for the disease at Duke Children’s Hospital. Newborn screening gave him the chance to benefit from the only available treatment for Krabbe, cord-blood transplant, which halts the progression of the disease.