Meet Camille Keene!
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]
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. 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]
APBD Tour de Friends Team Raises $99,000 During the 2022 Million Dollar Bike Ride at the University of Pennsylvania
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]
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. “We [Read More]
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.Please read co-president Jeff Levenson's thoughts on Mr. Zuckerman's passing...Mr. Zuckerman served on the Foundation's Board of [Read More]
First Virtual APBD Scientific & Community Conference is a Success!
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 [Read More]
Foundation to Host Virtual APBD Scientific and Community Conference on May 11-12
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 [Read More]
Newcastle University Scientist Awarded 2021 MDBR Grant to Develop Glycogen Synthase-Inhibiting Therapeutic for Adult Polyglucosan Body Disease
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 [Read More]
Foundation Receives Continuing Grant from CZI’s Rare As One Program to Accelerate Patient-Led APBD and Rare Disease Research
A continuing grant from the CZI Rare As One Network boosts the APBD Research Foundation’s work to expand its reach and impact. Brooklyn, New York – The APBD Research Foundation is honored to receive a third year of funding [Read More]
Hadassah Medical Center Scientist Awarded Research Grant to Advance a Promising Small Molecule for the Treatment of Adult Polyglucosan Body Disease
New York, NY – The APBD Research Foundation is pleased to announce the awarding of a $50,303 research grant to Or Kakhlon, PhD at Hadassah-Hebrew University Medical Center for the advancement of a small molecule compound with potential as a [Read More]
APBD Research Foundation Engages the FDA in Patient Listening Session
December 21, 2021 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. Click [Read More]
APBD Biomarkers workshop #2
The 2021 APBD Biomarkers Symposium brought together APBD clinicians and researchers, related disease and technology experts, and industry partners to discuss promising biomarker research. Short presentations were followed by interactive discussions with all symposium participants. The symposium goal was to [Read More]
APBD Ad Debuts at Rare New England’s Annual Conference
October 25, 2021 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 [Read More]
Developing Healthcare Guidelines for APBD and Related GSD IV Diseases: A Collaborative Effort
September 30, 2021 New York, NY – 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 [Read More]
Call for APBD Research Proposals — MDBR Funding Opportunity
August 26, 2021 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. For six consecutive years, [Read More]
APBD Research Foundation Selected to Participate in Rare Genomes Project Disease Prevalence Study
New York, NY – The Adult Polyglucosan Body Disease (APBD) Research Foundation has been selected to participate in a disease prevalence study led by the Rare Genomes Project. As a Chan Zuckerberg Initiative - Rare As One grantee, the [Read More]
2021 APBD Tour de Friends Team at the Million Dollar Bike Ride
THANK YOU! We had 89 enthusiastic and imaginative virtual riders on the Tour de Friends team this year! The selfies we share here were fun to collect but also accomplish something very important. They show donors, researchers, physicians, pharmaceutical leaders, and government decision [Read More]
UT Southwestern Scientist Receives 2020 MDBR Grant to Develop a Novel Therapeutic Strategy for Adult Polyglucosan Body Disease
New York, NY -- Adult Polyglucosan Body Disease (APBD) researcher Felix Nitschke, PhD at UT Southwestern Medical Center recently received a $121,268 grant to advance rare disease research from the University of Pennsylvania’s Million Dollar Bike Ride (MDBR) program. For the fifth [Read More]
News Release –ROOTS: Jewish Genes and Cuisine
TV HOST ALI ROSEN AND MASTER CHEF JEFFREY YOSKOWITZ SPREAD AWARENESS OF JEWISH GENETIC DISEASES AT “ROOTS: Jewish Genes and Cuisine” Online Event Benefited the Adult Polyglucosan Body Disease Research Foundation NEW YORK, March 5, 2021 -- Emmy-nominated TV personality [Read More]
Meet Our Honoree: Dr. Jesse Cedarbaum
Meet Our Honoree Dr. Jesse Cedarbaum is Professor, Adjunct of Neurology and Psychiatry at Yale Medical School and Founder and Head of Coeruleus Clinical Sciences, LLC. Dr. Cedarbaum currently serves on the Foundation’s Pharmaceutical Development Committee, where he is helping [Read More]