APBD Community Recognizes Rare Disease Day

We're excited about joining the National Organization for Rare Disorders and the broader rare disease community around the world once again in celebrating Rare Disease Day. Leading up to February 28, we asked our community to wear zebra-striped [Read More]

February 27th, 2023|

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 [Read More]

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 [Read More]

February 17th, 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 [Read More]

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 [Read More]

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 [Read More]

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 [Read More]

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 [Read More]

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 [Read More]

August 31st, 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 [Read More]

June 23rd, 2022|
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