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Hello, I’m Abdulrahman – in the beginning I was shocked, but then I digested the news, my lifestyle and way of living really helped me in overcoming these hardships When Were You Diagnosed? Which Type (If Known)? October 2023 How Has Ataxia Impacted Your Life? It has been challenging and 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 closer to effective treatments and a cure for Ataxia. Meet the Researcher Project title: Pioneer SCA3 Translational Research Award (2024): Read More…
A computer tomography (CT) scan, also called a CAT scan, is a diagnostic imaging procedure that uses X-rays and a computer to help doctors see inside your body. CT scans provide detailed, cross-sectional pictures of bones, soft tissues, and organs that doctors can use to detect problems like injuries, infections, Read More…
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 7 (SCA7) is a rare, autosomal dominant neurodegenerative disorder characterized by progressive cerebellar ataxia and cone-rod retinal dystrophy. The following 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? Which Type (If Known)? Toronto, ON, Canada – SCA Type 2 How Has Ataxia Impacted Your Life? Negatively. This all 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 also to learn more about the experience of living with Ataxia. In May 2026, NAF staff members published a scientific paper in the journal The 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 to the doctor for further examination, and he confirmed it. To be 100% sure, they performed genetic testing, which confirmed 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 NAF at www.ataxia.org/JoinNAF. Hello from NAF’s Clinical Services Team Hello Fellow HCP’s, When I think of February, the first thing 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 the work they’re doing in their local communities and beyond to help improve the lives of people living with Ataxia. Read More…
Escrito por Alexandra Putka Editado por la Dra. Pragya Goel Traducido por Daphne Rincon ¿Te sientes cansado(a)? No estás solo(a). La fatiga es un síntoma común de las ataxias espinocerebelosas y afecta la calidad de vida. Las ataxias espinocerebelosas (también reconocidas como SCAs) se caracterizan por diversos síntomas, pero la fatiga no siempre está incluida en esta lista. Clínicamente, la fatiga se define como la dificultad para iniciar Read More…
