Nevertheless, She Persisted*

By Sarah Williams [Editor's Note: Our thanks to Kerry Wong for featuring Sarah Williams’s APBD narrative in her newly published book, "Kaleidoscope: Rare Disease Stories." The book is a collection of first-person stories from people around the world living with a variety [Read More]

March 19th, 2024|

Q&A with Matthew Gentry, PhD

Dr. Matthew Gentry is a Professor and Chair of Biochemistry & Molecular Biology in the College of Medicine at the University of Florida. He is a prominent brain metabolism scientist who has made groundbreaking discoveries in the realm [Read More]

December 13th, 2023|

Q&A with Berge Minassian, MD

Berge Minassian, MD, is a Professor in the Departments of Pediatrics and Neurology at UT Southwestern Medical Center. Dr. Minassian is a pediatric neurologist whose clinical specialties are epilepsy, neurodegenerative diseases, and neurogenetic conditions. The Chief of Child Neurology at UT Southwestern, he also leads the Neurosciences Center at Children’s [Read More]

December 13th, 2023|

A Wife’s Perspective on APBD

By Robin Knoll October 20th, 2023 My friends and family have always told me that I do too much. Between my job as a social worker and volunteering with Hadassah for the last 36 years, advocating for [Read More]

October 24th, 2023|

Taking APBD One Day at a Time

By Bruce Rosky, Caregiver and APBD advocate January 4, 2023 It was in 2012 that I started to realize that my wife Jennifer’s memory lapses were a significant sign to be taken seriously. That insight set us [Read More]

September 6th, 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|

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|

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 [Read More]

August 27th, 2021|

APBD – A Daughter’s Perspective

By Feigy Weiss Rosenberg July 28, 2020 Editor’s Note: This is the first 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 [Read More]

August 7th, 2020|
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