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 [...]

September 23rd, 2022|

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 [...]

August 31st, 2022|

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 [...]

August 26th, 2022|

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 [...]

July 7th, 2022|

“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 [...]

June 23rd, 2022|

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 [...]

May 13th, 2022|

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. [...]

December 6th, 2021|

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 [...]

October 25th, 2021|

A Daughter’s Reflections on APBD

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 [...]

August 27th, 2021|

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, [...]

August 27th, 2021|