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 [...]
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 [...]
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 [...]
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 participating [...]
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 [...]
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 [...]
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 [...]
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 [...]
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 [...]
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 [...]
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 [...]
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... [...]
Camille with “Bunny” at Meadowbrook Stables in Chevy Chase, Maryland We are pleased to introduce you to Camille Keene, the newest addition to our team. We partnered with Second Day to find Camille who is studying [...]
The APBD Research Foundation in conjunction with the University of Pennsylvania has launched a call for APBD research proposals. This Request For Applications (RFA) is made on behalf of the University of Pennsylvania’s Orphan Disease Center (ODC). Funds for the APBD [...]
THANK YOU! We had 104 enthusiastic and imaginative virtual riders on the APBD Tour de Friends team this year! This was our largest group yet who joined us for the sixth consecutive year at the 2022 Million Dollar Bike [...]
The APBD Research Foundation today announced that Jennifer Orthmann-Murphy, MD, PhD has joined the Foundation’s Scientific Advisory Board. Dr. Orthmann-Murphy is Assistant Professor of Neurology and Co-Director of Age Span Fellowship in MS/Neuroinflammatory Disorders at the University of Pennsylvania. “We [...]
New York, NY – The APBD Research Foundation shares with deep regret the passing of board member Robert (Bob) Zuckerman on June 23, 2022.Please read co-president Jeff Levenson's thoughts on Mr. Zuckerman's passing...Mr. Zuckerman served on the Foundation's Board of [...]
On May 11-12, over 140 attendees joined the APBD Research Foundation for its 2022 APBD Scientific & Community Conference. The virtual event brought together stakeholders in the APBD community – researchers, health care providers, industry partners, and individuals and [...]
New York, NY – The APBD Research Foundation is excited about hosting the virtual APBD Scientific and Community Conference on May 11-12, 2022. "We're excited about bringing together researchers, health care providers, industry partners, and individuals and family [...]
New York, NY – The Adult Polyglucosan Body Disease (APBD) Research Foundation is pleased to share that researcher Wyatt Yue, PhD at Newcastle University in the U.K. is the recipient of a $99,025 grant from the University of Pennsylvania’s Million [...]