January 13th, 2026
New York, NY – The APBD Research Foundation shares with sadness the passing of former Board Member and Director Emeritus David Epstein on January 3, 2026.
David served actively on the APBD RF’s Board of Directors for a decade during the Foundation’s early years and continued his involvement as a Director Emeritus when APBD forced him to reduce his workload.
David’s colleagues and friends remember not only his professional contributions, but also his character. Emil Weiss, MS, Co-Founder and Co-President shared, “He was a great man—his devotion to APBDRF, and his help with books, statistics, and other aspects of the Foundation were unmatched.”
Jeff Levenson, DDS, Co-President, also reflected, “David joined us at a critical juncture, and his professional experience in financial management as well as in organizational development was crucial. We owe a significant portion of the success of our Columbia University and NORD patient registries to him. Beyond his professional achievements, David embodied kindness and compassion. He will be deeply missed.”
David Epstein’s service, insight, and humanity left an indelible mark on the APBD Research Foundation. His legacy will continue through the programs he helped build and the progress he made possible.
Our thoughts, prayers, and support are extended to the Epstein family and friends during this difficult time.
News Releases
The APBD Research Foundation is preparing to host a Vision Loss and APBD Focus Group to convene later this fall. This group will bring together APBD patients who have experienced or are experiencing changes to their vision, caregivers, and clinicians in a 1.5 hour session to learn about lived experiences with vision-related symptoms and begin to understand how vision loss is associated with APBD.
The APBD Research Foundation is excited to announce a new collaboration with Costello Medical, Inc., following the Foundation’s successful application to Costello Medical’s pro bono project initiative for Rare Disease organizations.
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.
The APBD Research Foundation is delighted to announce that Lindsay Gill, PhD has been promoted to full-time Research Director.
We are thrilled to announce that our community raised an incredible $201,177 during the 2026 APBD Tour de Friends Rally for Research fundraising campaign, exceeding our original goal of $120,000.
The Academy of General Dentistry (AGD) recently awarded the APBD Research Foundation's co-president Dr. Jeff Levenson with the Lifelong Learning & Service Recognition (LLSR). He received this award along with 36 other LLSR recipients during the AGD’s scientific session in Las Vegas, NV on June 27, 2026.
In April 2026, the APBD Research Foundation announced participant recruitment for its APBDRF Drug Repurposing Study initiative in partnership with COMBINEDBrain. We are grateful to the patients and families in our community that have volunteered to provide biosamples to help make this study a reality.
The APBD Research Foundation is pleased to announce the third of our 2025 Rally for Research Pilot Grant Program grant recipients: Rebecca Koch, PhD, RDN at Duke University. Her research project is entitled, Gene Therapy to Treat the Neurophenotype of Glycogen Storage Disease Type IV.
The APBD Research Foundation is pleased to announce the second of our 2025 Rally for Research Pilot Grant Program grant recipients: Mayank Verma, MD, PhD at UTSW Medical Center. His research project is entitled Preclinical Validation and Biomarkers in APBD of a GYS1-ASO Currently in Phase 1 Clinical Trial for Lafora Disease
On behalf of the APBD community, the APBD Research Foundation has responded to the US Food and Drug Administration's (FDA) request for public comments for its recently released draft guidance for the use of the Plausible Mechanism Framework for individualized genetic therapies.