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Shaun Wesley Best

My Ataxia journey began in 1978, following a three-month coma I experienced the year before, at age 12. Since then, I’ve faced significant balance challenges and experienced over 50 falls. It took many years before I was correctly diagnosed and prescribed medication to help manage my symptoms. Despite living with Read More…

J.C. Myers

Ataxia comes as a dominant gene through my great grandfather, Ernest, my grandmother, Ernestine, and my mother, Leslie. My mother’s brother died young and we don’t know if he had it. I am the only one of four siblings who has it. My younger brother has early Alzheimer’s at 62. Read More…

Face of Ataxia Research: Shane Hellyer, PhD

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: Characterization of naturally occurring mGlu1 mutations Read More…

Susan Harding

I’ve been living with a genetically acquired Ataxia since birth but was only clinically diagnosed in 1992. My mother was diagnosed in 1976. Her brother had been previously diagnosed in 1974. Another brother was never diagnosed but certainly had it. In my late 30’s when I was having more trouble Read More…

24/7 Wearable Sensors: A New Way to Track Ataxia

Written by Poojashree Chettiar Edited by Pragya Goel, PhD AI and wearable tech may transform how ataxia is monitored Could everyday devices help track ataxia? Finding treatments for neurological disorders like spinocerebellar ataxias (SCAs) and multiple system atrophy (MSA-C) has been challenging. A major reason is the lack of good Read More…

Keith Heiken

I am 62 years young. I was diagnosed with SCA8 when I was 24. Dr. Byrd took a skin sample to help with other types of testing (at the time there were only five types of Ataxia that they knew of). My mother is in a wheelchair and has been Read More…

Sarah Altis

It started about 12 years ago. My dad was diagnosed with Ataxia. I wasn’t really sure what that meant, but I spent the next several years watching his steady decline. His speech slurred, his walk was unbalanced, and his fine motor skills deteriorated. In 2022, I had a horrible case Read More…

Bella

I’m Bella and from China, thanks to this platform so I could share my story here. My diagnosis was very easy, not that complicating. I went to the doctor, tell them I want a genetic test, then boom! I won the lottery. Cause I know the existence of SCA3, after Read More…

Michal

Hello Everyone, I’m a pharmacist and have been living for half a century. I learned about my wife’s Ataxia in October of this year. I must admit that I signed up for the hospital library specifically to read more about this condition, but on my wife’s genetic results, I noticed Read More…

Faces of Ataxia Research: Matthew Scaglione, PhD

Written by Taylor Stolberg 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: Mechanisms of Neurodegeneration in SCA48 Education: Read More…

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