Welcome to the September 2026 edition of The RFC1 Connection
In this issue:
A Message from the President
Upcoming Zoom Seminar — featuring Andrea Cortese, MD, PhD & Peter Todd, MD, PhD
Searching for Treatments in RFC1-Related Disease: What One Recent Study Adds to the Picture, by David Pellerin
A Newer DNA Test May Improve the Diagnosis of Adult-Onset Ataxia
New Monthly Feature: PaMent Journeys — Elmer Malgwyn's Story
Introducing Karen Brida, Chair of the PaMent Advisory Committee
How You Can Participate
Allan Tissenbaum, M.D., President, RFC1 Foundation
A message from the president: Thank you to everyone who has registered for our upcoming seminar, contributed to the RFC1 Foundation, shared information with family and friends, or plans to participate. Your involvement is helping us build a more connected and informed RFC1 community. Our September 10th Zoom seminar is an important opportunity to hear directly from two leaders in repeat-expansion research: Andrea Cortese, M.D., Ph.D., and Peter Todd, M.D., Ph.D.
Dr. Cortese has played a central role in defining RFC1-related disease and conMnues to investigate how RFC1 repeat expansions cause neurodegeneration.
Dr. Todd is a physician-scientist whose laboratory studies the biology of nucleotide repeat-expansion disorders and works toward new therapeutic strategies. We are grateful that both guests are sharing their time and expertise with our community. Whether you are living with RFC1-related disease, supporting a family member, providing clinical care, or advancing research, we hope you will join us and bring your questions.
With warm regards, Allan Tissenbaum, MD President RFC1 Foundation
“Living with CANVAS has taught me how wonderful the human body is and how lucky I have been to live a healthy life up to now at 79 years old.” — Elmer Malgwyn, Patient Journeys