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.
Podcast
Welcome to the “Immeasurably More” podcast, where faith and hope meet heartbreak and suffering in an uplifting journey of encouragement and perseverance. Join Erin Kelly-Bean and her mother, Jill Kelly as they delve into real stories and life-changing truths that remind us of the boundless love we can experience when we anchor our lives in who God is and who He created us to be.
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.
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
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About the Kelly Family
Learn about the Kelly Family Story. Read their story in Without a Word.
Click here to learn more
