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]
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]
By Jeff Levenson Who in our foundation can forget Robert Zuckerman's big hug at the opening of his KINDSIGHT exhibit in the 92nd Street Y? Robert was optimistic. He was a force of nature. He was also always ready with [Read More]
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]
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]
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]
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]
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]
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]
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 is a 24/7/365 battle. From getting an accurate diagnosis, to seeking support, to finding trusted resources, to connecting with community members who understand, and working towards a cure, the APBD Research Foundation stands with you on this journey. [Read More]
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]
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]
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]
Editor’s Note: This is the second in a series of articles written by Feigy W. Rosenberg, daughter of the late Gregory Weiss, who was one of the co-founders of the APBD Research Foundation. Feigy shares from her heart, hoping [Read More]
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]
We're looking to hire a passionate and experienced Communications and Development Manager to join our small team during this crucial period of growth in our community.