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Living and Dying with Spinocerebellar Ataxia Type 7: A Carer’s Perspective Affiliation: Husband and primary carer of patient with confirmed SCA7 (ATXN7 gene, 10/49 CAG repeats) Background Spinocerebellar Ataxia Type Read More…
http://youtu.be/sYccDzT25eY?si=f6GkonkY4FvsyFHy The video above is from Maitreyi’s personal YouTube channel, in which she discusses her experiences living with Ataxia. Mature topics are discussed, viewer discretion is advised. When Were You Diagnosed? Read More…
The National Ataxia Foundation (NAF) led a survey of people with Ataxia and their families in January 2025. The goal of the survey was to get feedback on NAF’s services, but Read More…
When I turned 20, I started to notice something was different about me. I had a brain MRI, which showed that I probably had Ataxia. My mom and I went Read More…
This is a periodic newsletter for Ataxia clinicians to keep them up-to-date on patient resources and other medical news. To begin receiving this newsletter, join as a professional member of Read More…
Guest Author: Shannon Dunphy Lazo The Advocate Spotlight highlights members of the Ataxia community who are creating change through advocacy, awareness, education, and community involvement. In this series, advocates share Read More…
I am a Registered nurse who recently went on disability for Spinocerebellar Ataxia. My family tree is full of members with this same illness. I want to spend the rest Read More…
Written by Victoria Martinez Faces of Ataxia Research highlights scientists whose work is supported by grants from NAF. Each story shows how our donors are fueling discoveries that bring us Read More…
Thank you to everyone who joined our State of NAF webinar. It was an opportunity to reflect on where we’ve been, where we’re headed, and how the voices of the Read More…
I have a beautiful wife and 3 grown kids. I have always been very active, running track and cross-country in high school and road races in my early and latter Read More…
