TAKE ACTION: Shape Research With Your Lived Experience

Dear Friend,

Sharing your experience to inform research is crucial as we work to advance therapeutic development efforts. Whether you're a patient, a caregiver or family member, or a healthcare professional, here are some opportunities for you:

Interviews to Support the Development of a Disease Concept Model | COMBINEDBrain & UNC-Greensboro

Holland Whitaker, a genetic counseling graduate student at University of North Carolina-Greensboro, is seeking patients, caregivers, and healthcare providers to participate in the APBD and Neuromuscular GSD IV Disease Concept Model study. Using information from 60-90 minute interviews conducted via Zoom, Holland will develop a patient-centered disease concept model of APBD and Neuromuscular GSD IV. Read More

Clinical Trial Readiness Survey | APBD Research Foundation

Lindsay Gill, PhD, the APBD Research Foundation's Research Director, is inviting GSD IV -- including adult-onset (APBD) and early-onset GSD IV -- patients and caregivers to complete a Clinical Trial Readiness survey. This online survey will take you approximately 15 minutes and it helps us, as well as researchers and industry partners, understand what makes participating in clinical trials easier or more difficult. To date, we have 58 respondents -- make sure your voice is counted! Read More

Glycogen MRI Biomarker Study | Kennedy Krieger Institute

Kennedy Krieger researcher Nirbhay Yadav, PhD, is seeking volunteers for the next stage of his glycogen MRI study aimed at identifying a biomarker for APBD. Traditional MRIs often reveal structural brain changes in APBD patients. Dr. Yadav is exploring innovative MRI methods that seek to image glycogen itself -- and if successful, this would serve as a disease biomarker. Participants may include APBD patients that participated in the previous MRI study, as well as new patients. Read More

Blood Biomarker Research Study | UCLA

UCLA researchers Gal Bitan, PhD and Brent Fogel, MD, PhD are now accepting participants -- individuals who have APBD and other forms of GSD IV, as well as healthy participants -- at NYU (New York, NY) or UCLA (Los Angeles, CA) for their study looking at blood-based biomarkers that may point to changes in the brain. Participation involves a blood draw and completing health questionnaires and assessments. Read More

Have questions or need additional information?

Contact our Research Director, Lindsay Gill, PhD, at lindsay@apbdrf.org.

Upcoming Events

LAST CHANCE! Shop at Pampered Chef and Support Your #1 Cause

Now through August 29, shop our virtual Pampered Chef Fundraiser, hosted by community member Ruth Smith. 30% of all purchases will benefit the APBD Research Foundation and help advance research toward treatments.



Shop cookware, kitchen tools, gifts, and more, all while supporting APBD research. Shop Here

Monthly Caregiver / Family Chats

Sept. 10, 2026 | 4:30pm PT | 7:30pm ET

Oct. 8, 2026 | 4:30pm PT | 7:30pm ET

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

Monthly Patient Chats

Sept. 23, 2026 | 9am PT | 12pm ET 

Oct. 28, 2026 | 9am PT | 12pm ET 

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

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!