Oct. 20, 2025
Carol Rosenstock recently opened up about her journey from being diagnosed with MS to receiving an APBD diagnosis in the Jewish Standard.
Working with her friend Beth Chananie, an editor for the newspaper, and the Foundation team, Carol has made a way for greater awareness and understanding. Following publication, a physician contacted the publisher to request an additional copy of the issue; an encouraging sign that the piece is helping spread the word about APBD.
Read Carol’s story in
The Jewish Standard (page 54)
Carol shared, ”For the last 20 years, in jobs at Boston area universities and hospitals, I worked with scientists to support their research, primarily in life sciences and mental and behavioral health. I stopped working in 2024, two years after I was diagnosed with APBD. Now I’m supporting research on a more personal level, as a patient, by participating in a natural history study and several biomarkers development studies. I volunteer with the Foundation by contributing to the newsletter.”
Do you have a contact at a local paper or magazine that could help write about APBD and raise awareness? We'd love to hear from you and help -- write to Anesa Kajtazovic at anesa@apbdrf.org.
Editor’s Note: We’re thankful for Carol and the Jewish Standard team for helping raise the public profile and understanding of APBD.
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.