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.

05/29/2026

🎉 Save the Date -- June 23 | APBDRF's Virtual Community Gathering! 🎉

Join us on June 23 (8-9pm ET) for our second Virtual Game Night as we celebrate the successful completion of our Rally for Research Fundraising Campaign. Come to connect as a community and enjoy the games that Digital Dov is lining up for us!

🎲 Free to attend
💻 Virtual event
🎉 Trivia, prizes, and more

💜 Friends and family welcome

Registration is required: https://loom.ly/b5KRiJU

05/26/2026

Exciting news! Our "2026 APBD Tour de Friends Rally for Research" Campaign now has a second matching gift opportunity.

Thanks to the generosity of a community member, every donation will be matched dollar for dollar, up to $20,000, through June 26.

Your support of this Campaign advances groundbreaking research and makes treatments a reality!

✨ Get involved:
• Donate
• Create your own fundraising team
• Rally your friends, family, and community

💜 Join us. Fund the future.
https://loom.ly/GVfLNPo

05/25/2026

Happy Memorial Day! Today, we remember and honor those who have sacrificed. Thank you to all who have served our country for your extraordinary service, commitment, and courage. Wishing you and your loved ones a restful holiday!

05/19/2026

Did you know that May is “Leave a Legacy Month?”

Planning for the future is one of the most meaningful gifts you can give your loved ones and it can also create lasting hope for future APBD patients and families. 💜

Check out our Plan Your Future: What You Need to Know webinar, featuring estate planning attorney Bradley Frank of Barnes & Thornburg LLP, along with members of our APBD community who have shared why legacy giving matters to them.

🎥 Watch the webinar on our YouTube channel: https://loom.ly/70-0Vbc

Topics included:
✔️ Estate planning basics
✔️ Wills and trusts
✔️ Probate and asset titling
✔️ Key documents to protect your wishes
✔️ Legacy giving and creating lasting impact

05/15/2026

🚴‍♂️ SAVE THE DATE! June 7, 8am CDT -- One of our incredible Rally for Research teams is once again hitting the road for APBD research!

After organizing the very first "Team Knoll" Bike Ride in Austin, TX last year, Allan Rosenthal, a family member of APBD patient Mark Knoll, is bringing the community together again this summer. 💜

Allan shared, “Seeing Mark battle this disease up close, and the incredible way his wife Robin continues to rally around him, moved me to take action. I wanted to give back to support them and others facing APBD. Leading our biking team in Texas and bringing people together for this cause has been truly meaningful, and we’re committed to doing this year after year.”

📍 June 7, 2026
🕗 8am CDT
📍 Bike ATX, South Austin, TX

If you’re in the area or have friends or family nearby, we’d love for you to join and make APBD research advancements possible.

Donate to advance APBD research: https://loom.ly/GVfLNPo

05/11/2026

Exciting to see APBD highlighted at the recent American Academy of Neurology Annual Meeting in Chicago.

Presentations from Michio Hirano and Or Kakhlon showcased ongoing work in APBD and focused on GHF-201, an investigational therapy in development by Golden Heart Flower.

Moments like this reflect the growing momentum in APBD research and the importance of continued collaboration across researchers, clinicians, industry partners, and patient advocacy organizations as we move closer toward potential treatments. 💜

Read more: https://loom.ly/BPfAEoA
American Academy of Neurology (AAN)

05/10/2026

To all the amazing moms (grandmoms, mother-figures, mothers-to-be...) in our community: you may be just one person, but to your family, you are everything. Wishing you a beautiful Mother's Day!

05/09/2026

May is Mental Health Awareness Month

Living with or caring for someone with a rare disease can take a toll on your mental health. You’re not alone, your well-being matters.

Join our monthly Patient Chats and Caregiver/Family Chats for support, resources, and connection. We’re here for you.

05/05/2026

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

Check out what’s inside:
- 34,000 -- new research puts a number on the global burden of APBD and other forms of GSD IV
- Together, we can make a difference with the 2026 Rally for Research Campaign
- Only a few days left to participate in our Drug Repurposing Study!
- APBDRF submits commentary to the FDA on “Individualized Therapy Pathway" guidance
- APBD research spotlighted at major neurology conference
- Upcoming Patient Chat and Family/Caregiver Chat

Address

2257 East 63rd Street
Brooklyn, NY
11234

Telephone

+16465805610

Website

http://apbdrf.org/

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