Hunter's Hope Foundation

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

This summer, Hunter's Hope brought together leading medical experts and newborn screening professionals to share their k...
10/22/2026

This summer, Hunter's Hope brought together leading medical experts and newborn screening professionals to share their knowledge and discuss newborn screening for Krabbe disease and metachromatic leukodystrophy (MLD).
All three webinars are now available to watch:
- Optimizing Newborn Screening for Krabbe Disease

- An Introduction to MLD Newborn Screening

- Navigating Newborn Screening Results for Late Onset Krabbe Disease

Whether you're a healthcare professional, a family member, or simply interested in learning more, we invite you to explore these free educational resources.

Watch the recordings here:
https://www.huntershope.org/family-care/leukodystrophy-resource-library/

Newborn screening saves lives, but many states still lack the resources needed to screen every baby for all conditions o...
10/15/2026

Newborn screening saves lives, but many states still lack the resources needed to screen every baby for all conditions on the federal Recommended Uniform Screening Panel (RUSP).

It can take a decade or longer for a recommended screening to reach babies in every state. These delays can mean missed opportunities to detect and treat serious conditions before they cause irreversible harm.

The bipartisan Surge to Save Newborns Act (H.R. 10571) would provide dedicated funding to help all 50 states implement screening for every condition on the RUSP, plus two future additions.

Every baby deserves access to lifesaving newborn screening, no matter where they are born.

Your voice can help make that happen! It takes just a few moments to ask your members of Congress to support this important legislation.

Take action today: https://surgetosave.org/act-now/

Dr. Sally Evans talks about ways to support musculoskeletal health using therapies, medications and technology — all wit...
09/29/2026

Dr. Sally Evans talks about ways to support musculoskeletal health using therapies, medications and technology — all with the goal of helping children and adults with leukodystrophies function as well as possible in everyday life.

Supporting quality of life is such an important part of caring for someone with a leukodystrophy.

Watch here:
https://youtu.be/BNE8I1zT5Go

Turning 18 doesn’t mean a person’s medical needs suddenly change — but the healthcare system often does.Catie Becker tal...
09/28/2026

Turning 18 doesn’t mean a person’s medical needs suddenly change — but the healthcare system often does.

Catie Becker talks about the transition from pediatric to adult care and some of the challenges families with leukodystrophies can face along the way.

Helping families receive knowledgeable, connected care throughout life is an important part of the LCN’s work.

Watch here:
https://youtu.be/QmteDkyHXk4

What should excellent care look like for an adult living with a leukodystrophy?Dr. Jennifer Orthmann-Murphy discusses st...
09/27/2026

What should excellent care look like for an adult living with a leukodystrophy?

Dr. Jennifer Orthmann-Murphy discusses standards of care for adults, along with important considerations for clinical trials.

This is an area the Leukodystrophy Care Network continues to focus on as we work to help close this gap in care.

Watch here:
https://youtu.be/uo2iqQ7IT54

Leukodystrophies are not only childhood diseases.Dr. Yedda Li gave a powerful talk about the long and often difficult ro...
09/26/2026

Leukodystrophies are not only childhood diseases.

Dr. Yedda Li gave a powerful talk about the long and often difficult road many adults face before receiving the right diagnosis for a leukodystrophy.
Her presentation highlights the need to shorten that diagnostic journey and help adults get answers and appropriate care sooner.
Watch here:
https://youtu.be/uuVhe6fsHiM

Kristen Malfara shares her family’s experience with Aicardi-Goutières syndrome and offers a perspective on the transitio...
09/25/2026

Kristen Malfara shares her family’s experience with Aicardi-Goutières syndrome and offers a perspective on the transition from caring for a child to caring for an adult, including the unique challenges that can come with it.

Her experience helped guide discussions later in the day focused on improving care for adults with leukodystrophies.

Watch Kristen’s presentation here:
https://youtu.be/X2u368l_heU

Dr. Florian Eichler discusses treatment research in Vanishing White Matter Disease and what is being explored for the fu...
09/24/2026

Dr. Florian Eichler discusses treatment research in Vanishing White Matter Disease and what is being explored for the future.
Sharing these updates at the HH Symposium helps keep our Leukodystrophy Care Network (LCN) informed about the latest developments and potential opportunities for their patients.
Watch here:
https://youtu.be/E8apGLV53GY

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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