Florida Action Alert!
Florida babies are being put at risk—and your voice is needed now (January 2026).
Early detection of Krabbe disease through newborn screening saves babies lives. While many states already screen for Krabbe, Florida does not. With a critical review underway, this is a pivotal moment to act. Click below to send a message to your Florida state representatives and urge immediate action to add Krabbe disease to Florida’s newborn screening panel. Every message matters. Every baby deserves a chance. If you are not a Florida resident, but know people who are, please send them the link to this Florida Action Alert, and ask for their help.
Click here to learn more and Take Action.
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, MLD, CTX 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, Georgia, South Carolina, Minnesota, Maryland, Texas, Iowa, Oregon, New Mexico and Kansas are the only states that currently screen all newborns for Krabbe Disease.
To find out what conditions your state screens for, visit Baby’s First Test. To learn about the costs for your state’s newborn screening program, click here.
Take Action!
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 hope@huntershope.org for more information.
Send a letter to your legislator in support of newborn screening for diseases like Krabbe – click here.
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.