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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…
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 of my life helping others to eventually find a cure or in whatever capacity that may be. When Were You 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: Characterizing peripheral neuropathy onset and progression 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 Ataxia community continue to shape our path forward. During the webinar, we announced a transformative gift from an anonymous donor 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 years, I have always loved to run. I worked in the produce dept for a grocery chain for almost 36 Read More…
What is a variant? The human genome contains over 3 billion base pairs– individual “letters” in the DNA code that make the instructions for our cells and bodies to function. A variant or mutation is any change in this code. These changes can be passed down from our biological parents Read More…
Note: Aude submitted her story in French. ChatGPT was used to translate her submission. The translation may not be accurate. We will include her submission in French, followed by the English translation in italics. Bonjour à tous je viens d être diagnostiquée pour la maladie de Canvas la semaine dernière Read More…
