Member Stories

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…

I am pleased to share some exciting news with you. I am a 67-year-old woman with a diagnosis of SCA8, and for the first time in a long time, I feel incredibly optimistic—I truly believe I have turned things around. Each morning, I begin with a one-mile walk followed by Read More…

I’ve had balance and coordination issues my whole life – but I really started noticing it 10 years ago. I think the stress of myself going back to college (Bachelor’s Degree) is what kicked the symptoms off. I work a semi-desk job (IT Support) but it’s tougher when I have Read More…

My grandmother died prematurely from ataxia when I was just a baby, 26 years ago. Now today, my aunt has severe SCA and my mother is also starting to show symptoms. I also am very concerned for my cousin, my brother, my sister, and myself; not to mention, my newborn Read More…

My paternal grandfather had a wide gait and difficulty walking and talking. We were told it was like “hardening of the arteries in the brain.” He started showing signs in his 60s. His father had the same condition. An autopsy on my grandfather showed he had OPCA (Olivopontocerebellar Ataxia). My Read More…

A Wheelchair is Not The Endgame By Pinalben “Pinky” Patel I’m sorry, but I don’t consider wheelchair users disabled. I am a very happy person – there are only a few things I despise in life. And one of them is the comment, “She’s in a wheelchair just like you Read More…

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…

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…

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…

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…