Meet Anesa Kajtazovic, the Newest Addition to our Team!

The APBD Research Foundation is delighted to introduce our newest team member, Anesa Kajtazovic, who has joined us as our part-time Community Affairs Officer. Anesa brings with her a wealth of experience from the realms of nonprofits and governmental [...]

November 6th, 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 [...]

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 [...]

September 6th, 2023|

Foundation Approves and Implements its 2023-2025 Strategic Plan

We are excited to share the APBD Research Foundation’s 2023-2025 Strategic Plan. This Strategic Plan is the result of efforts spanning eight months, involving our Board of Directors, members of our Scientific Advisory Board, staff, mentors, and Foundation partners [...]

June 13th, 2023|

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 [...]

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 [...]

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

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 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|
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