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
It should not be this hard to save a child’s life…
You can help! Take action here.
On February 9, 2023 the Advisory Committee on Heritable Disorders in Newborns & Children (ACHDNC,) a federal committee that makes recommendations to the Secretary of Health about newborn screening (NBS), voted whether to add Krabbe Disease to the Recommended Uniform Screening Panel (RUSP). Despite the irrefutable evidence, there was a tied vote. Therefore, Krabbe won’t be added to the RUSP. This decision will keep most states from adding Krabbe to their NBS panels. This also means that children with Krabbe will continue to suffer and die from a treatable disease when born in these states.
For almost two decades, the Hunter’s Hope Foundation has been fighting for NBS for Krabbe Disease. Krabbe is a truly horrible and deadly disease. If babies are not screened for the disease at birth through their state’s newborn screening program, they will be diagnosed too late for life saving treatment and typically die by the age of two. In their short lives, Krabbe robs these children of the ability to speak, walk, swallow, and virtually all voluntary movement while causing extreme complications and painful suffering.
The Secretary of Health makes the final decision on what diseases are included on the RUSP. Secretary Becerra has the power to change this.
Children with Krabbe Disease deserve to live.
You can help! Take action here.
Help us convince Secretary Becerra to right this terrible wrong and to do his part to make sure all U.S. children are screened for Krabbe Disease at birth.
Learn more here.
Podcast
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.
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