The Latest …
Checkout our YouTube channel for recently posted informational videos
Inheritance - How is RFC1 disease inherited?
Balance in RFC1 - What ataxia actually is and why RFC1 disease is uniquely hard on the body’s sense of balance.
RFC1 CRISPR Explained: English / French - CRISPR targets the expanded DNA
View recording of our September 10, 2026 webinar featuring two internationally recognized experts in RFC1 disease: Andrea Cortese, MD, PhD from the University College London and Peter Todd, MD, PhD from the University of Michigan
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Newsletters
Take a look at our most recent newsletters for RFC1 Foundation news and featured articles from members of our Scientific Advisory Board that offer a better understanding of RFC1 disease and a message of hope.
October 2026 Connection - English / French
Message from the President
Dear Friends,
After my RFC1 diagnosis, I understood how long a person can carry symptoms that seem unrelated. A cough, imbalance and altered sensation may be explained away separately until a diagnosis brings them together. I hear that experience from our community again and again.
In this issue, Paul Lockhart and Kayli Davies explain why RFC1 disease was so hard to find. We also look at a recent Norwegian study of life with CANVAS. K.K. shares her own path to diagnosis and the uncertainty that can remain afterward.
Paul was a co-discoverer of the RFC1 repeat expansion as a cause of CANVAS in 2019, a finding that finally gave many families a name for years of unexplained symptoms. Since then, he and his colleagues have helped characterize different repeat patterns, improve genetic diagnosis, and develop patient cell models to study the disease. He has also shared his knowledge generously with our Foundation. I am grateful that he and Kayli Davies have written this article for our community.
Thank you to everyone who joined our September conversation with Andrea Cortese and Peter Todd or helped spread the word. The seminar is now on our YouTube channel to watch and share.
We are approaching 150 members, with encouraging connections in France. We are translating materials into French and making short videos. Every story and question helps guide this young Foundation. I am grateful to be building it with you.
With warm regards,
Allan Tissenbaum, MD President RFC1 Foundation
In This Issue
Ending the Odyssey — Paul J. Lockhart and Kayli C. Davies
Research Spotlight — A Norwegian CANVAS Study
Patient Journey — K.K.
September Expert Seminar
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