Hunter's Hope Foundation

Hunter's Hope Foundation Working toward treatments and a cure for Krabbe & Leukodystrophies, advocating for newborn screening and supporting those affected by these diseases.

Leukodystrophies are complex, rare, and often life-altering. No single center or expert can do this work alone.The Leuko...
08/20/2026

Leukodystrophies are complex, rare, and often life-altering. No single center or expert can do this work alone.

The Leukodystrophy Care Network creates space for collaboration—bringing together medical providers, newborn screening professionals, researchers, and families to learn from one another and continuously improve care.

The Hunter’s Hope Medical Symposium builds on this work, gathering the community for dedicated time to collaborate, share insights, and drive meaningful advancements that improve the lives of children and adults living with leukodystrophies.

Join us for part two of our webinar series on newborn screening for Krabbe disease.This free educational webinar will br...
08/19/2026

Join us for part two of our webinar series on newborn screening for Krabbe disease.

This free educational webinar will bring together leading experts to discuss best practices for infants with newborn screening results associated with later onset forms of Krabbe disease.

Speakers will share practical guidance on psychosine as a biomarker, genotype interpretation, clinical management, additional biomarkers, and treatment considerations.

This webinar is intended for state newborn screening programs, public health laboratories, genetic counselors, metabolic specialists, neurologists, transplant and treatment teams, and other medical professionals involved in caring for infants and children who screen positive for Krabbe disease.

Register here: https://huntershope.tfaforms.net/70

Watch our recent webinar, Optimizing Newborn Screening for Krabbe Disease: Psychosine Testing, Treatment Pathways, and B...
08/18/2026

Watch our recent webinar, Optimizing Newborn Screening for Krabbe Disease: Psychosine Testing, Treatment Pathways, and Best Practices for State Programs.
This webinar features expert discussion on psychosine testing, treatment pathways, and best practices to support state newborn screening programs and clinical teams working to improve outcomes for babies identified through Krabbe newborn screening.
Watch here: https://youtu.be/QCi3zbqbbjs

08/12/2026

One of the most special traditions of the Hunter’s Hope Symposium🩵

Each year, we love watching our incredible families cross the finish line together, a moment that celebrates each family, their strength, their love, and the journey we continue to share together. We are so thankful for every single family who makes the Symposium so special. You are the heart of Hunter’s Hope, and we love you all so much! 💙💙

Address

PO Box 643, 21 Princeton Place Suite 12
Orchard Park, NY
14127

Opening Hours

Monday 8:30am - 4:30pm
Tuesday 8:30am - 4:30pm
Wednesday 8:30am - 4:30pm
Thursday 8:30am - 4:30pm
Friday 8:30am - 4:30pm

Telephone

+17166671200

Website

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