Hunter’s Hope Foundation is a non-profit organization committed to giving hope through education and awareness, research, and family care for Leukodystrophies and Newborn Screening for

Hope ~ Life
Leukodystrophy ~ Newborn Screening

“For I know the plans I have for you,” declares the Lord,
“plans to prosper you and not to harm you, plans to give you hope and a future.”
~ Jeremiah 29:11

Today, January 30, 2024, in a landmark moment, the Federal Newborn Screening Advisory Committee voted to add Krabbe Disease to their Recommended Newborn Screening Panel. This decision, a result of over twenty years of unrelenting advocacy, brings us a step closer to our collective aim of screening every newborn for Krabbe Disease.

This victory is a testament to the tireless efforts of the Hunter’s Hope Foundation, the Kelly Family, the Krabbe Community, and a beacon of hope for children who are affected by this disease in the future.

With newborns now being screened for Krabbe at birth, this opens the door to early detection and lifesaving treatments.

We are genuinely moved by the support we’ve garnered in achieving this milestone and continue to steadfastly work towards our mission for all Leukodystrophies.

We invite you to join us in our mission to improve the lives of these courageous children battling for their future.

You can support our Newborn Screening advocacy efforts here.

You can learn more about the Federal Newborn Screening Advisory Committee here.




The Light Your Heart With Hope podcast is founded on the belief that our stories matter… not just in the here and now, but for eternity. We share testimonies of hope that point to the greater hope found in Christ. Our prayer is that you will be encouraged to share your own story. 

Click here to learn about our Podcast

Affected Family Registration

Become a member of our Hunter’s Hope Family by registering as an Affected Family. Together, we will win the battle against these devastating diseases. Click here to Register.

Click here to learn about our Family Programs

Newborn Screening (NBS)

Newborn Screening (NBS) is a public health program where infants are screened shortly after birth for a list of conditions not clinically evident early in life. NBS looks for serious developmental, genetic, and metabolic disorders that would not otherwise be detected in time for life-altering treatment. For these disorders, early detection and treatment is essential to preventing irreversible mental or physical disabilities, even death.

Click here to find out more

Leukodystrophy Care Network

The Leukodystrophy Care Network (LCN) mission is to revolutionize the health and quality of life of individuals affected by Leukodystrophies with proactive, innovative, and comprehensive medical care standards and specialized centers.

Importance of the LCN – video

Click here to learn more

Light Your Heart With Hope

The Hunter’s Hope logo is a candle flame in a heart. It represents the light of Christ in our hearts. “For God, who said, ‘Let light shine out of darkness,’ made His light shine in our hearts to give us the light of the knowledge of the glory of God in the face of Christ.” ~ 2 Corinthians 4:6

Click here to learn more

About the Kelly Family

Learn about the Kelly Family Story. Read their story in Without a Word.

Click here to learn more