When a 13-Year-Old Takes on The Fight for a Cure!
January 4, 2021 Elliott and his family after completing their 36-mile bike ride, Double Chai for a Cure. In anticipation of his bar mitzvah [...]
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. Click here to read the narrative... [...]
Q&A with Felix Nitschke, PhD
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 [...]
Q&A with Wyatt Yue, PhD
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 [...]
A Patient Story: Alan
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 [...]
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 [...]
A Patient Story: Alan
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 [...]
A Patient’s Story: Jeff
“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 [...]
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 [...]
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 [...]
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 [...]
“Remembering Robert Zuckerman“
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 [...]
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 [...]
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 [...]
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 [...]
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 [...]
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 [...]
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 [...]
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 [...]
Most Read APBD Articles in 2021
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. [...]
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 [...]