Betsy Trainor | Board Member
Ataxia of Charlevoix-Saguenay Foundation
Betsy Trainor is an attorney and mother of four residing in Northern Virginia. Her twenty-five-year-old daughter was diagnosed with ARSACS at the age of 20. Betsy now sits on the Board of Directors of the ARSACS Foundation, based in Montreal Canada. She spends a considerable amount of her time outside of work volunteering and advocating for ARSACS. She has collaborated with Dr. Nevan Krogan of The Krogan Lab, USCF and with Dr. Jeremy Schmahmann of Massachusetts General, seeking research support from both institutions.Betsy has raised more than $180k for ARSACS research. She prides herself on being an outspoken voice for the rare disease community and is determined to find a treatment and/or cure for this progressive neurodegernative disease.
Appearances:
Day 1- World Orphan Drug Congress USA 2025 @ 14:30
Fireside Chat: ARSACS (Ataxia Charlevoix-Saguenay): Finding solutions for rare disease patients
The rare disease community has seen an increased uptick in collaboration between scientists around the world to find solutions for rare disease patients. The panel for this unique fireside chat will discuss the perspective of a rare disease caregiver who has a daughter with ARSACS and her intensive search to find a treatment or cure. After more than twenty years of seeking a diagnosis, she stumbled upon the work of world renowned neurologist, Dr. Jeremy Schmahmann of Massachusetts General Hospital, and he diagnosed her daughter during a tele-visit in 2020. Subsequently, the two have partnered together with the ARSACS Foundation, based in Montreal Canada, to embark upon various research protocols, fundraising initiatives, and collaborative efforts to rapidly advance science forward for this rare disease.
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