APBD Research Foundation

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APBD Research Foundation

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Founded in 2005, the APBD Research Foundation is the only nonprofit organization dedicated to finding a cure for APBD, while improving the lives of those impacted.

04/27/2026

🧬 Be the First to Know.

Want to stay up to date on the latest in the APBD community?
From groundbreaking research, powerful patient and caregiver stories, to upcoming events, our monthly newsletter keeps you informed and inspired.

✨ Sign up here: https://loom.ly/7wT5wFg

04/25/2026

It's National DNA Day!

National DNA Day is celebrated on April 25 to commemorate the date in 1953 that scientists shared their discovery of the double helix. Did you know that approximately 80% of rare diseases have a genetic root cause, including APBD and other forms of Glycogen Storage Disease Type IV?

We recognize this day for the inspiring work being done by patients, families, advocates, researchers, and other stakeholders to advance rare disease research and therapy development!

04/23/2026

We're excited to announce the addition of Carol Rosenstock – a dedicated volunteer and APBD patient – to our Foundation's Board of Directors.

"Turning promising science into treatments requires people who have navigated the academic research world and also know how to communicate what’s at stake for patients. Carol brings both, and her focus on our mission comes at exactly the right time,” said Jeff Levenson, DDS, the Foundation's co-president.

Please join us in welcoming Carol to the team!

Full article available here: https://loom.ly/52LcLs8

04/21/2026

The 2026 APBD Tour de Friends Rally for Research is here!

We're aiming to raise $120,000 to advance life-saving APBD research through this campaign.

Since our founding in 2005, we have raised and awarded over $2 million in pilot research grants as a Foundation and through UPenn's MDBR. These seed grants have made possible the ground-breaking drug discovery and biomarker development initiatives that are progressing today.

Now, you can be part of what comes next. Create your own fundraising team – bring together friends, family, and your community to raise awareness and have fun for a meaningful cause, whether it’s through a walk, bike ride, or another activity that inspires you.

Join us. Fund the future.

👉 https://loom.ly/GVfLNPo

04/17/2026

Volunteers Needed: Help Advance APBD Research

Researchers at UCLA, led by Dr. Gal Bitan and Dr. Brent Fogel, are seeking volunteers for a study focused on identifying blood-based biomarkers for APBD and other forms of GSD IV.

Why this matters: These biomarkers can help detect changes in the brain, bringing us closer to earlier diagnosis and future treatments.

If you or a loved one is living with APBD, your participation could make a meaningful difference.

📞 310.825.2320
📧 CNRC@mednet.ucla.edu

Learn more: https://loom.ly/zktvu_Q

04/14/2026

The APBD Research Foundation is excited to partner with COMBINEDBrain - Outcome Measures and Biomarkers for Neurodevelopmental and Holland Whitaker (a Genetic Counseling student at the UNC Greensboro) on the development of a “Disease Concept Model*” for APBD and other neuromuscular forms of GSD IV.

Read more: https://loom.ly/kFWYhdU

WHAT IS A “Disease Concept Model?”
It uses patient, caregiver, clinician, and researcher interviews to develop a complete picture of the disease, which can be used to inform research and clinical trials.

💛 Stay tuned! Four community members are participating in the practice session right now. We will be sharing additional information on how you can volunteer for this research study soon.

04/13/2026

MISSED IT? Our recent Patient Chat featured guest speaker Lindsay Gill, PhD (the Foundation’s Research Manager) who took the time to explain the importance of donating your samples to the APBDRF BioBank.

Why is the APBDRF BioBank important? It helps move us closer to clinical trial readiness -- meaning we have the tools, data, and understanding needed to support clinical trials.

Watch here 👉 https://loom.ly/HErapdU

04/11/2026

In recognition of , we're sharing this collage from our staff and board members!

04/10/2026

In recognition of , we’re honoring Sarah Williams and Jeff Cooper in our community. 💛

Some in our community may recognize their story - - one that reflects the strength, love, and unwavering support that siblings bring, especially when facing a rare disease like APBD. We admire their resilience and the way they continue to show up for our community.

Today, we also recognize all siblings in our community who stand beside their loved ones through every challenge.

Thank you, Sarah and Jeff, for using your voice to help us build a more connected, supportive community.

Read Sarah’s story, Nevertheless, She Persisted: https://loom.ly/03InVjY

PS: In the photo below, Jeff and Sarah are pictured with their mom, Ann Cooper, a reflection of the love and strength they share as a family.

04/09/2026

We Need You: Help Accelerate a Potential Treatment

Have you been diagnosed with APBD or early-onset GSD IV (Andersen Disease)?

This is your chance to be part of a groundbreaking drug repurposing study with one goal:
👉 Find an existing drug that could help treat APBD.

Why this matters: Repurposing an existing drug could save years in development and bring treatments to our community faster.

What’s involved?
✔️ A simple at-home nasal swab
✔️ No clinic visits
✔️ Open to participants worldwide

We’re looking for 30 patients, each paired with an unaffected same-sex family member (sibling, parent, or child).

⏳ Deadline: May 1, 2026

Your participation could help unlock a treatment, not just for you, but for the entire APBD and GSD IV community.

Take the next step today: https://loom.ly/aDsZ5DE

04/02/2026

In Case You Missed It! Here’s our March newsletter: https://loom.ly/ek1K5D0

Check out what’s inside:
-Volunteers needed for UCLA blood-based biomarker research study
-Developing a “Disease Concept Model” for APBD
-Carol Rosenstock joins Foundation’s Board of Directors
-Watch Dr. Lindsay Gill discuss the “APBDRF Biobank” initiative
-Upcoming Chats for patients and caregivers
-Create your legacy with FreeWill

Address

2257 East 63rd Street
Brooklyn, NY
11234

Telephone

+16465805610

Website

http://apbdrf.org/

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