Melanie Robinson’s Caregiving Journey Reaches Millions

Written By Gabriel Baril

January 17th, 2025

We are excited to share that Melanie Robinson’s narrative on caregiving for her mother, Ginny, who was diagnosed with APBD in 2018, has been published on KevinMD.com.

Read Melanie’s narrative

Melanie shared, “Before her diagnosis, my mom was extremely active and healthy… So in 2013, when she began experiencing symptoms like incontinence and difficulties with walking, we knew that something wasn’t right.”
Read more…

We are incredibly grateful to Melanie and Ginny for sharing their APBD journey as mother and daughter. A special thanks to Dr. Kevin Pho, host of KevinMD.com, for providing a platform for this powerful 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: A special thanks to Liv Palma, our Genetic Counseling Intern from Columbia University’s Department of Genetic Counseling, for drawing out this powerful narrative with Melanie and Ginny.

 

News Releases

Featured
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.

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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.

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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.

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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.

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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

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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. 

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JUST PUBLISHED: New Study Highlights That Over 34,000 People Worldwide Are Affected by APBD and Other Forms of GSD IV
JUST PUBLISHED: New Study Highlights That Over 34,000 People Worldwide Are Affected by APBD and Other Forms of GSD IV

We are excited to share that our global genetic prevalence of GBE1-related diseases study has been published in the Journal of Inherited Metabolic Disease Reports (JIMD Reports).

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Advancing APBD Research Has Never Been More Urgent or More Promising
Advancing APBD Research Has Never Been More Urgent or More Promising

We are excited to launch the 2026 APBD Tour de Friends Rally for Research Fundraising Campaign to raise $150,000.

Read more →
We Need You for the APBDRF Drug Repurposing Study!
We Need You for the APBDRF Drug Repurposing Study!

The APBD Research Foundation is excited to announce an opportunity for you to play a direct role in advancing treatment research. You do not have to leave home to participate.

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Carol Rosenstock Joins the APBD Research Foundation’s Board of Directors
Carol Rosenstock Joins the APBD Research Foundation’s Board of Directors

The APBD Research Foundation is delighted to announce the appointment of Carol Rosenstock to its Board of Directors.

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Gabriel Baril
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