University of Florida and UT Southwestern Scientists Awarded 2022 Million Dollar Bike Ride Grants for APBD Research
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 of Pennsylvania’s Million Dollar Bike Ride (MDBR) program.
APBD Community Recognizes Rare Disease Day
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.
APBD Research Foundation Appoints its First Executive Director
On behalf of the Board of Directors, we are delighted to announce Natacha Pires as the APBD Research Foundation’s first executive director.
JUST PUBLISHED: Clinical Practice Guideline for APBD and GSD IV Diseases
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 scientific journal, Molecular Genetics and Metabolism.
Bruce Rosky Talks About APBD and Caregiving on KevinMD.com
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.
Meet Camille Keene!
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 Political Science at Howard University. Camille will help us develop key communications that support our efforts to grow our programs and make treatments and a cure a reality.
An APBD Research Funding Opportunity Through UPenn’s MDBR Program
The APBD Research Foundation in conjunction with the University of Pennsylvania has launched a call for APBD research proposals.
APBD Tour de Friends Team Raises $99,000 During the 2022 Million Dollar Bike Ride at the University of Pennsylvania
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 Ride (MDBR) hosted by the University of Pennsylvania’s MDBR program for rare disease research.
Jennifer Orthmann-Murphy, MD, PhD Joins the Foundation’s Scientific Advisory Board
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.
APBD Research Foundation Mourns the Passing of Board Member Robert Zuckerman
New York, NY – The APBD Research Foundation shares with deep regret the passing of board member Robert (Bob) Zuckerman on June 23, 2022.
APBD Research Foundation Engages the FDA in Patient Listening Session
On October 28, 2021, the APBD Research Foundation engaged the U.S. Food and Drug Administration (FDA) in a Patient-Led Listening Session to share the burden of APBD and the needs of our community.
APBD Ad Debuts at Rare New England’s Annual Conference
We’re excited to share this ad that we developed for the Rare New England’s (RNE) Annual Conference this past October. Raising the public profile and recognizing the hallmark symptoms of APBD is a crucial facet of our mission.
Developing Healthcare Guidelines for APBD and Related GSD IV Diseases: A Collaborative Effort
The APBD Research Foundation is excited to partner with the Association for Glycogen Storage Disease (AGSD) on the development of healthcare guidelines for APBD and related Type IV Glycogen Storage (GSD IV) diseases.
Call for APBD Research Proposals — MDBR Funding Opportunity
The APBD Research Foundation is pleased to announce the opportunity of one $99,025 grant or two $49,513 grants through the University of Pennsylvania’s Orphan Disease Center Million Dollar Bike Ride Pilot Grant Program.