APBD Research Foundation Appoints its First Executive Director

Dear APBD community, On behalf of the Board of Directors, we are delighted to announce Natacha Pires as the APBD Research Foundation’s first executive director.  Natacha brings over 15 years of nonprofit/business management, communications, and development experience along with [...]

February 27th, 2023|

A Mother’s Perspective on APBD

By Ann Cooper February 17th, 2023 After my first grandchild was born, my daughter, Sarah, and I were sitting in her living room one afternoon when she asked me, “Mom, when do you stop worrying about [...]

February 17th, 2023|

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 [...]

February 15th, 2023|

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... [...]

January 18th, 2023|

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 [...]

December 6th, 2022|

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 [...]

December 6th, 2022|

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 [...]

November 3rd, 2022|

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 [...]

October 19th, 2022|

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|
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