On May 6, 2024, the APBD Research Foundation hosted a virtual Focus Group that brought together, for the first time, over 50 participants representing the Adult Polyglucosan Body Disease (APBD) and Glycogen Storage Disease Type IV (GSD IV) communities. [Read More]
Kerry Wong We are excited to share that Sarah William’s APBD journey is featured in the newly published book, Kaleidoscope: Rare Disease Stories, by Kerry Wong. The stories featured in this book are firsthand narratives from individuals [Read More]
The APBD community joined the National Organization for Rare Disorders and rare disease communities around the world to celebrate Rare Disease Day on February 29th. Leading up to the day, we urged our community to wear [Read More]
The APBD Research Foundation is pleased to share that Or Kakhlon, PhD (Research Fund of the Hadassah Medical Organization) and Priya Kishnani, MD, MBBS and Rebecca Koch, PhD, RDN, LDN (Duke University Medical Center) are the recipients of rare disease [Read More]
We are excited to share that Golden Heart Flower, Ltd. announced that the U.S. Food and Drug Administration (FDA) has granted Orphan Drug Designation for the company’s product GHF-201 to treat glycogen storage disease type IV, including APBD. Golden Heart [Read More]
The APBD Foundation is excited to announce key additions to its Scientific and Medical Advisory Board (SMAB). From left to right: Jennifer Orthmann-Murphy, MD, PhD; Felix Nitschke, PhD; Matthew Gentry, PhD; and Wyatt Yue, PhD [Read More]
The APBD Research Foundation is delighted to introduce our newest team member, Anesa Kajtazovic, who has joined us as our part-time Community Affairs Officer. Anesa brings with her a wealth of experience from the realms of nonprofits and governmental [Read More]
New York, NY – The APBD Research Foundation is excited to contribute to the Glycogen Storage Disease (GSD) Value Project. This initiative will develop an internationally applicable set of patient health outcomes that are relevant to individuals with liver GSDs [Read More]
The APBD Research Foundation in partnership with the Orphan Disease Center (ODC) at the University of Pennsylvania is pleased to announce the 2023 Million Dollar Bike Ride Pilot Grant Program. We are honored to be a part of [Read More]
The APBD Research Foundation is delighted to announce the appointment of Michael Canmann to its Board of Directors. Michael Canmann is Executive Vice President & Chief Financial Officer of CC Industries, Inc. - a Henry Crown Company. He has over [Read More]
We are thrilled to announce that the APBD Research Foundation has partnered with Probably Genetic to increase access to genetic testing within our community. APBD is an ultra-rare, monogenic, and complex multi-system condition. Because it is difficult for health [Read More]
We had our largest group yet: 290 eager and imaginative riders, walkers, and donors on the APBD Tour de Friends team participated in the 2023 Million Dollar Bike Ride (MDBR) on June 10. It was our eighth consecutive year [Read More]
The APBD Research Foundation is delighted to announce that Paul Ashley has joined the Board of Directors. Paul is based in Calgary and has more than 25 years of sales and account management experience.“We are thrilled to welcome Paul to the [Read More]
We are excited to share the APBD Research Foundation’s 2023-2025 Strategic Plan. This Strategic Plan is the result of efforts spanning eight months, involving our Board of Directors, members of our Scientific Advisory Board, staff, mentors, and Foundation partners [Read More]
The APBD Research Foundation is delighted to announce that Art Glassman and Beth Katz have joined the Board of Directors. Art Glassman is a retired estate planning and tax attorney in Minnesota. His late wife, Penny, was diagnosed with [Read More]
The APBD Research Foundation is pleased to share that Matthew Gentry, PhD (University of Florida) and Berge Minassian, MD and Mayank Verma MD, PhD (UT Southwestern Medical Center) are the recipients of rare disease research grants from the University [Read More]
We're excited about joining the National Organization for Rare Disorders and the broader rare disease community around the world once again in celebrating Rare Disease Day. Leading up to February 28, we asked our community to wear zebra-striped [Read More]
Dear APBD community, On behalf of the Board of Directors, we are delighted to announce Natacha Pires as the APBD Research Foundation’s first executive director. Natacha brings over 15 years of nonprofit/business management, communications, and development experience along with [Read More]
The APBD Research Foundation and the Association for Glycogen Storage Disease (AGSD) are excited to announce the publication of “Diagnosis and Management of Glycogen Storage Disease Type IV, Including Adult Polyglucosan Body Disease: A Clinical Practice Resource” in the [Read More]
We are excited to share that Bruce Rosky’s narrative on caregiving for his wife and hero, Jennifer, who was diagnosed with APBD in 2016, was published on KevinMD.com. Click here to read the narrative... [Read More]