Dr. Larry Arky’s APBD Journey Reaches Millions

Written By Gabriel Baril

December 14th, 2024

We are excited to share that a powerful narrative from OB/GYN Dr. Larry Arky who was diagnosed with APBD in April of 2023, has been published on KevinMD.com.

Read Dr. Arky’s narrative

Dr. Arky shared, “As an OB/GYN for the past 22 years, I have loved delivering babies, performing surgeries, and having long-term relationships with my patients. Now, I am on the other side of things, as a patient myself.” Read more…

We are incredibly grateful to Dr. Arky for courageously sharing his experience and insights from both a personal and physician’s perspective. A special thanks to Dr. Kevin Pho, host of KevinMD.com, for providing a platform for this important story. With over 3 million monthly page views and over 250,000 followers on social media, this platform is vital for raising awareness about APBD!

Editor’s Note: Thank you to Dr. Arky for sharing his experiences and helping raise the public profile of APBD! A special thanks to Liv Palma, our Genetic Counseling Intern from Columbia University’s Department of Genetic Counselling, for drawing out this powerful narrative with Dr. Arky.

 

News Releases

Featured
Have You Experienced Vision Changes with Your APBD Diagnosis?: Consider Joining the Vision Loss and APBD Focus Group
Have You Experienced Vision Changes with Your APBD Diagnosis?: Consider Joining the Vision Loss and APBD Focus Group

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.

Read more →
APBD Research Foundation Receives Crucial Support from Costello Medical to Develop and Share Findings from the Clinical Trial Readiness Survey
APBD Research Foundation Receives Crucial Support from Costello Medical to Develop and Share Findings from the Clinical Trial Readiness Survey

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.

Read more →
Honoring David Epstein
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.

Read more →
Lindsay Gill, PhD Appointed Foundation’s Research Director
Lindsay Gill, PhD Appointed Foundation’s Research Director

The APBD Research Foundation is delighted to announce that Lindsay Gill, PhD has been promoted to full-time Research Director.

Read more →
Historic Milestone: APBD Community Raises Over $200,000 to Advance Research
Historic Milestone: APBD Community Raises Over $200,000 to Advance Research

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.

Read more →
Dr. Jeff Levenson, APBDRF's Co-President, Receives the Academy of General Dentistry's Lifelong Learning & Service Recognition
Dr. Jeff Levenson, APBDRF's Co-President, Receives the Academy of General Dentistry's Lifelong Learning & Service Recognition

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.

Read more →
Foundation Launches Drug Repurposing Initiative in Partnership with COMBINEDBrain
Foundation Launches Drug Repurposing Initiative in Partnership with COMBINEDBrain

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.

Read more →
APBD Research Foundation 2025 Rally for Research Grant Series:  Duke University Scientist Awarded Pilot Grant to Evaluate Gene Replacement Therapy for APBD and Other Forms of GSD IV
APBD Research Foundation 2025 Rally for Research Grant Series:  Duke University Scientist Awarded Pilot Grant to Evaluate Gene Replacement Therapy for APBD and Other Forms of GSD IV

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.

Read more →
APBD Research Foundation 2025 Rally for Research Grant Series:  UTSW Medical Center Scientist Awarded Pilot Grant to Evaluate Treatment for an Allied Disease in APBD
APBD Research Foundation 2025 Rally for Research Grant Series:  UTSW Medical Center Scientist Awarded Pilot Grant to Evaluate Treatment for an Allied Disease in APBD

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

Read more →
Foundation Submits Public Comment to the FDA on the Plausible Mechanism Framework for Accelerating Individualized Therapy Development for Rare Diseases
Foundation Submits Public Comment to the FDA on the Plausible Mechanism Framework for Accelerating Individualized Therapy Development for Rare Diseases

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. 

Read more →
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