Table of Contents

Volunteers needed for UCLA blood-based biomarker research study
Developing a “Disease Concept Model” for APBD
Carol Rosenstock joins Foundation’s Board of Directors
Watch Dr. Lindsay Gill discuss the “APBDRF Biobank” initiative
Upcoming Chats for patients and caregivers
Create your legacy with FreeWill

Volunteers Needed for UCLA’s Blood-based Biomarker Research Study

UCLA researchers Gal Bitan, PhD and Brent Fogel, MD, PhD are seeking volunteers for their research study that aims to identify blood-based biomarkers* which point to changes in the brain for people who have APBD and other forms of GSD IV.

Interested in participating? Contact the UCLA study coordinator at 310.825.2320 or CNRC@mednet.ucla.edu.

Gal Bitan, PhD and Brent Fogel, MD, PhD

Developing a “Disease Concept Model” for APBD -- a Collaborative Research Initiative

Holland Whitaker

The APBD Research Foundation is excited to partner with COMBINEDBrain and Holland Whitaker (a Genetic Counseling student at the UNC Greensboro) on the development of a “Disease Concept Model*” for APBD and other neuromuscular forms of GSD IV*. A “Disease Concept Model” uses patient, caregiver, clinician, and researcher interviews to develop a complete picture of the disease, which can be used to inform research and clinical trials*.

Stay tuned! Four community members are participating in the practice session right now. We will be sharing additional information on how you can volunteer for this research study soon.

Carol Rosenstock Joins APBDRF’s Board of Directors

The APBD Research Foundation is delighted to welcome Carol Rosenstock to its Board of Directors.

Jeff Levenson, DDS -- the APBDRF’s Co-President -- shared, "Turning promising science into treatments requires people who have navigated the academic research world and also know how to communicate what’s at stake for patients. Carol brings both, and her focus on our mission comes at exactly the right time.”

Carol Rosenstock

Missed Last Month’s Patient Chat with Lindsay Gill, PhD?

Watch the recording!

Our recent Patient Chat featured guest speaker Lindsay Gill, PhD (the Foundation’s Research Manager) who took the time to explain the importance of donating your samples to the APBDRF BioBank.

Why is the APBDRF BioBank important? The short answer is a complicated concept: clinical trial readiness, which refers to the availability of research tools, infrastructure, and an advanced understanding of a disease to support high-quality clinical trials.

You can also watch recordings of previous Chat presenters here.

Upcoming Events

APBDRF hosts talks, workshops, and scientific meetings for patients, caregivers, health professionals, and researchers. These programs connect our community members and deepen the understanding of how APBD impacts lives.

Patient Chat

Apr. 22, 2026 | 9am PT | 12pm ET

May 27, 2026 | 9am PT | 12pm ET

The hour will also include open mic time to discuss your discoveries, questions, and other thoughts.

This Chat is hosted by volunteer moderator Harriet Saxe. To learn more or register for this event, email Harriet at harriet@apbdrf.org.

Caregiver / Family Chat

Apr. 16, 2026 | 4:30pm PT | 7:30pm ET

May 14, 2026 | 9:30am PT | 12:30pm EST

This Chat is hosted by volunteer moderator Linda Cedarbaum. To learn more and register for this event, email Linda at linda@apbdrf.org.

Taking Care of a Loved One with an Estate Plan

Did you know that the number one way to protect a loved one is by creating an estate plan? The process can seem hard and costly, but we've partnered with FreeWill to make it easy and free.

FreeWill allows you to create your will quickly and at no cost, ensuring your healthcare and financial wishes are communicated, your assets are secure, and your loved ones are provided with peace of mind. You can take care of your loved ones while also making a meaningful impact on the lives of others living with APBD and future generations.

Make a lasting impact -- now and beyond your lifetime…

For questions about FreeWill or legacy giving, contact Anesa Kajtazovic at anesa@apbdrf.org.

Disclaimer: Please note that FreeWill is not a law firm and cannot provide legal advice, nor can the APBD Research Foundation. We would always encourage that a lawyer reviews your will and any other important legal documents FreeWill may generate for you.

*Glossary

The glossary provides definitions for the words highlighted in grey in this newsletter.

We provide this FREE monthly newsletter resource to all of our GSD IV and allied disease community members. This resource is made possible by contributions to the APBD Research Foundation from donors like you. Thank You!

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