Take Action: You Can Help Advance Biomarker Research

UCLA researchers Drs. Gal Bitan and Brent Fogel are now accepting participants -- individuals who have APBD or other forms of GSD IV, as well as healthy participants -- at NYU (New York, NY) in addition to UCLA (Los Angeles, CA) for their biomarker study. Their work examines blood-based biomarkers that may point to changes in the brain. Participation involves an in-person blood draw and completing health questionnaires and assessments. 

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APBD Patients with Unusual Vision Changes or Vision Loss: We’d Like to Hear from You

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Vision loss has historically been viewed as a rare symptom in APBD. However, recent scientific work and conversations with our community indicate that deeper investigation is warranted. It’s possible that up to 10% of APBD patients experience unusual vision changes/vision loss. Does this describe your APBD experience?

This fall, we will be convening patients, caregivers, and clinicians for the “Vision Loss and APBD” Focus Group. Our gathering will improve our understanding of the vision symptoms experienced by APBD patients and the apparent connection between vision loss and APBD.



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Honoring David Epstein

We are honored to share the story of an extraordinary act of generosity and planning by former Board member David Epstein. David passed away on January 3, 2026.

David's connection to our Foundation’s mission was personal. After several misdiagnoses spanning 13 years, he was diagnosed with APBD in 2011. Determined to make a difference, he joined our Board of Directors in the Foundation’s early years and later continued his involvement as a Director Emeritus.

David was committed to finding a treatment for APBD, even when he recognized it would come too late to benefit him. When David was putting his affairs in order, he left a legacy gift through his IRA to the APBD Research Foundation. We are profoundly grateful for his kindness, foresight, and belief in what is possible. 

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Editor’s Note: We’re thankful to have a handful of community members, who, like David, included the APBDRF in their estate planning. If you would like to create a will -- or update your will to include the APBDRF -- we have partnered with FreeWill to help get you started. Contact Anesa Kajtazovic at anesa@apbdrf.org and learn more about Freewill’s easy-to-use tool. 

Disclaimer: Please note that FreeWill is not a law firm and cannot provide legal advice, nor can the APBD Research Foundation. We would always encourage that a lawyer reviews your will and any other important legal documents FreeWill may generate for you.

SAVE THE DATE: Dec. 1st is GivingTuesday

GivingTuesday—held every year on the Tuesday after Thanksgiving—is a global movement that inspires generosity and unites people in making a difference.

Join us to help make APBD treatments a reality for individuals and families living with this rare disease. Every gift moves us closer to solutions and better lives. 



Mark your calendar for December 1st or get a head-start and donate today to join this global day of giving!

We are excited to announce that the APBDRF has been chosen to be part of Costello Medical’s Fall 2026 cycle for its Global Health Pro Bono project. Working with the Evidence Development, Medical Communications, and Creative teams, we will develop a publication-ready analysis of our APBDRF Clinical Trial Readiness Survey.

We are grateful for this support from Costello Medical. Further, we want to thank the 74 patients, caregivers, and families from our community who completed the survey earlier this year. 

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Upcoming Events

The APBDRF hosts talks, workshops, and scientific meetings for patients, caregivers, health professionals, and researchers. These programs connect our community members and deepen the understanding of how APBD impacts lives.

Patient Chat

October 28, 2026 | 9am PT | 12pm ET 

November 25, 2026 | 9am PT | 12pm ET

This Chat is hosted by volunteer moderator Harriet Saxe. To learn more or register for this event, email Harriet at harriet@apbdrf.org.

Caregiver / Family Chat

November 12, 2026 | 4:30pm PT | 7:30pm ET

December 10, 2026 | 4:30pm PT | 7:30pm ET

This Chat is hosted by volunteer moderator Linda Cedarbaum. To learn more and register for this event, email Linda at linda@apbdrf.org.

We provide this FREE monthly newsletter resource to all of our GSD IV and allied disease community members. This resource is made possible by contributions to the APBD Research Foundation from donors like you. Thank You!