Take Action for Newborn Screening

  • Families in Ohio advocating for the Madison Layton Act in 2015
  • The signing of Hannah's Law in Pennsylvania
  • Jim met with Senator Schumer to ask for his support of the NBS Saves Lives Reauthorization Act
  • Anna Taylor and her family with the Kentucky Governor
  • Anniston Bazar and her parents are still working hard for Krabbe NBS to be implemented in Louisiana
  • Thank you to all of the families who worked hard for Krabbe NBS in Tennessee
  • Jim shared with legislators about the importance of newborn screening in his home state, Pennsylvania.

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 and Illinois are the only states that screen all newborns for Krabbe Disease. Ohio also 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. New Mexico, New Jersey, Pennsylvania, and Louisiana have all passed laws to add Krabbe Newborn Screening with implementation dates varying by state.

To find out what conditions your state screens for, visit Baby’s First Test.

Take Action!
Help us advocate for Expanded Newborn Screening in Every State.  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 2019 Legislation for Krabbe Newborn Screening by clicking on your state below:

South Carolina

If there’s activity going on in your state, we’d like to help – please let us know by contacting us 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.

Learn more about Ezra's story here.