July 27, 2026
Following another record-breaking Rally for Research campaign, the APBD Research Foundation brought the community together once again for its second annual Virtual Game Night on June 23, 2026.
More than 40 participants joined from across the country for an evening filled with fellowship, laughter, friendly competition, trivia, games, and prizes.
One of the evening's highlights was seeing families and friends come together to support each other and have fun. Several households included three generations, grandparents, parents, and children, all enjoying the games from the comfort of their homes. Community members especially loved seeing Board Member Susan Coddon's grandchildren join in the fun, along with the enthusiastic participation of Faye Weiss Rosenberg's children. Their excitement and laughter brought smiles to everyone on the call and reminded us that the Foundation's work reaches across generations.
The Foundation hosted its first Virtual Game Night last year, featuring trivia and bingo. After receiving positive feedback from participants, we knew it was an event worth bringing back.
The evening would not have been possible without the generosity of our volunteers, who helped organize the event and secured prizes for our winners.
Thank you to everyone who joined us. We look forward to seeing you at next year's Virtual Game Night!
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.