APBD Tour de Friends Rally for Research Fundraiser Raises Critical Funds!

Our APBD Tour de Friends Rally for Research fundraiser was a huge success! We surpassed our goal of $150,000 and raised $178,404. 

Thank you to all 287 donors, our Board of Directors who matched $50,000, and Dr. Ora Gordon, who matched $36,000. We also thank our peer-to-peer fundraising team leaders: Kathy Arky; Melanie Robinson, Faye Rosenberg, Alan Rosenthal and Robin Knoll, Carol Rosenstock, and Sharon Young. 

Together, we showed how strong and united our community is in pushing APBD research forward. Now that the fundraiser is done, we will soon ask researchers to send us their project ideas. 

Thank you for standing with us as we work to find treatments for APBD!

Lindsay Gill, Ph.D. Joins Foundation as Research Manager

We are happy to welcome Dr. Lindsay Gill as our new Research Manager.

Dr. Gill worked for 10 years as a neuroscientist with the U.S. Centers for Disease Control and Prevention. She studied Gulf War Illness, a military exposure-related syndrome in veterans of the 1990-91 Gulf War, and helped find possible treatments. This experience gave her opportunities to work with patients and veteran advocates, which provided her with an understanding of patient hopes and hardships, a rare experience for many basic science researchers. When Dr. Gill met the APBD community, she saw many similar struggles and the urgent need for treatments.

Jeff Levenson, DDS, the Foundation’s Co-President said, “On behalf of the APBD Research Foundation, I’m excited that Dr. Gill has joined us and will continue our mission-focused work that has been at the forefront of APBD research for over 20 years. She will lead our research strategy, foster scientific collaborations, and serve as a key ambassador for our mission.”

Golden Heart Flower, Ltd. Announces Phase I Trial in Europe

We are excited to share that Golden Heart Flower, Ltd. (GHF) has started a Phase I clinical trial in Europe to study GHF-201 in healthy adult volunteers. 

GHF-201 is a therapy designed to reduce polyglucosan body accumulation — the underlying cause of key symptoms, including bladder dysfunction and progressive loss of mobility — in Adult Polyglucosan Body Disease (APBD) patients

Phase I trials check if a new medicine is safe and can be tolerated. Healthy volunteers get small, increasing doses to see how the body reacts.  



Yaniv Glazer, CEO of GHF, shared, “This milestone marks a significant step forward for us, as we work to advance our mission to develop therapies for APBD and other rare but more prevalent diseases.”

Estimated Global Genetic Prevalence of GBE1-Related Diseases Increased to 34,000

Researchers at the Rare Genomes Project (RGP) have updated the global genetic prevalence estimate of people affected by diseases resulting from changes on the GBE1 gene, including APBD and early Glycogen Storage Disease Type IV. The number has changed from 1 in 325,000 people (reported in 2022) to 1 in 236,000. This means that as many as 34,000 people worldwide could be affected.

In 2022, our Foundation started working with the Rare Genomes Project at the Broad Institute of MIT and Harvard to study how common GBE1-related diseases are worldwide. This study was supported by the Chan Zuckerberg Initiative.

According to Samantha Baxter, MS, CGC, at the RGP, “Using the newly released gnomAD v4, which contains exome and whole-genome sequencing data from over 800,000 individuals and a three-fold increase in non-Europeans, we have improved estimates for the diseases we’re studying. In the case of GBE1-related diseases, those estimates went up.”

Upcoming Events

The Foundation 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

Aug. 27, 2025 | 9am PT | Noon ET 

Sep. 24, 2025 | 4pm PT | 7pm ET 

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

Aug. 14, 2025 | 7:30pm ET | 4:30pm PT

Sep. 11, 2025 | 7:30pm ET | 4:30pm PT

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

We provide this FREE monthly newsletter resource to all of our community members.

This resource is made possible by contributions to the APBD Research Foundation from donors like you.

Thank You!