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.
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.