APBD Research Foundation

Home
United States
Brooklyn, NY
APBD Research Foundation

Contact information, map and directions, contact form, opening hours, services, ratings, photos, videos and announcements from APBD Research Foundation, Medical Research Center, 2257 East 63rd Street, Brooklyn, NY.
(1)

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.

04/20/2026

🧬 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

04/17/2026

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

03/30/2026

Show Your Gratitude - - Honor a Doctor

We are grateful for the physicians who care for individuals living with APBD and help advance research and understanding of this rare disease. Their dedication brings hope to patients and families every day.

This Doctor’s Day, consider honoring a physician who has made a difference in your life with a gift to the APBD Research Foundation. Your tribute can help fuel critical research and progress for our community.

Make your gift in honor of a doctor 👉 https://loom.ly/TbXw9Vk

03/23/2026

Are you feeling alone? Battling APBD can feel isolating at times but you don’t have to go through it alone.
Join our private Patient Chat gathering on Wednesday, March 25, 2026, 9am PT | 12pm ET.

This is a safe space to discuss symptoms, share experiences, and explore coping strategies with others who truly understand.

Hosted by our dedicated volunteer moderator Harriet Saxe, who has been supporting our community through these chats since 2014.

To learn more or register, email:
📩 harriet@apbdrf.org

We look forward to connecting with you. 💙

03/20/2026

Art’s decision to include the APBD Research Foundation in his will was deeply personal -- a way to honor Penny’s fight and ensure hope for future patients.

You can make a lasting impact too.

Through our partnership with FreeWill, you can create or update your will in as little as 20 minutes and for free.

If you’re planning for the future, please consider including the APBD Research Foundation in your legacy.

Start your free will today: https://loom.ly/qJFz3Vc

03/18/2026

🧬 Growing Our GSD IV BioBank

Five community members and their families have already stepped forward and now we’re inviting 15 more participants to join them.

The GSD IV BioBank will help fuel APBDRF-led and researcher-led studies focused on biomarker discovery. It will also play an important role in testing potential treatments for APBD and other forms of GSD IV.

Your participation today helps power tomorrow’s breakthroughs. Be part of advancing research: https://loom.ly/BW347jw

Association for Glycogen Storage Disease
Glykogenose Deutschland e.V. SAGSD - Scandinavian Association for Glycogen Storage Disease Association Francophone des Glycogénoses AIGlico - Associazione Italiana Glicogenosii Glucolatino - Glucogenosis Hepáticas

Address

2257 East 63rd Street
Brooklyn, NY
11234

Telephone

+16465805610

Website

http://apbdrf.org/

Alerts

Be the first to know and let us send you an email when APBD Research Foundation posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Contact The Practice

Send a message to APBD Research Foundation:

Shortcuts

Want your practice to be the top-listed Clinic in Brooklyn?