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]
By Ann Cooper February 17th, 2023 After my first grandchild was born, my daughter, Sarah, and I were sitting in her living room one afternoon when she asked me, “Mom, when do you stop worrying about [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]
The Million Dollar Bike Ride for rare disease research is a significant funder of APBD research. In January 2021, Felix Nitschke, PhD, assistant professor in the departments of Pediatrics and Biochemistry at UT Southwestern Medical Center, received a MBDR [Read More]
Wyatt Yue, PhD, Professor of Structural Biology at Newcastle University, is the grant recipient of the 2021 Million Dollar Bike Ride for rare disease research. His research proposal outlines the discovery of glycogen synthase inhibitors as a novel therapeutic [Read More]
Together with his son, Alan runs an avant-garde, highly atmospheric, candle-making bar named Wax + Wine, where customers sip wine while pouring aromatic candles. Alan gets up early and drives himself to work 5 days a week, but he describes [Read More]
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 [Read More]
Together with his son, Alan runs an avant-garde, highly atmospheric, candle-making bar named Wax + Wine, where customers sip wine while pouring aromatic candles. Alan gets up early and drives himself to work 5 days a week, but he describes [Read More]
“It’s been working on me for 20 years,” says Jeff, an APBD patient who was fully employed and physically active despite increasingly troublesome symptoms. He was a runner, too. But then he began noticing that he was getting up from [Read More]
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 [Read More]
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 [Read More]