Amber Robertson’s GSD IV Narrative Reaches Millions

We are excited to announce that Amber Robertson's powerful story about her daughter Mia's GSD IV diagnosis has been published on KevinMD.com. Read Amber’s narrative Amber shared, “Even before Mia was born, I could sense that something about her [Read More]

July 22nd, 2025|

Lindsay Gill, Ph.D. Joins Foundation as Research Manager

The APBD Research Foundation is delighted to welcome Lindsay Gill, Ph.D. as Research Manager. Dr. Gill joins us following a ten-year career as a neuroscientist and neurotoxicologist with the National Institute for Occupational Safety and Health, a branch of [Read More]

July 22nd, 2025|

Jeff Cooper’s Story Reaches Millions

We are excited to share that a powerful narrative from Jeff Cooper, who was diagnosed with APBD in 2018 after several years of an MS misdiagnosis, has been published on KevinMD.com. Read Jeff's narrative Jeff shared, “I have always been [Read More]

June 19th, 2025|

Patient Perspectives Shared with the FDA

The APBD Research Foundation recently participated in the FDA’s Listening Session on “Patient and Care Partner Perspectives on Early Enrollment into Gene Therapy Clinical Trials for Rare Diseases.” Becca Reef, MS, CGC, our Scientific Coordinator, spoke on [Read More]

December 13th, 2024|

Meet Becca Reef, Our Newest Team Member!

The APBD Research Foundation is delighted to introduce our newest team member, Becca Reef, MS, who has joined us as our part-time Science Coordinator. Growing up just outside of Boston, Massachusetts, Becca was inspired to focus on making the [Read More]

August 22nd, 2024|
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