Member Stories

I spent 10 yrs with a Dr who thought I had MS. After a visit to Mayo clinic in MN, I was told no MS, probable CANVAS. I was put on long term disability from my job as soon as I started walking with a bad gait. In the refinery Read More…

Oh boy, where do I start? At the beginning I guess…following neck surgery I developed a 4cm abscess on my left prefrontal cortex. I had no symptoms of this abscess until it ruptured. I thought someone shot me in the head. Things get very hazy after this…I remember light hurting Read More…

I am from Venezuela, South America, I am 24 years old and living a “normal life” studying at university. My Ataxia is quite rare. I got sick 5 years ago, something viral that later turned into something neurological, many tests and still no exact diagnosis. I know it affected my Read More…

My name is Cameron Dingerson, and I have a rare form of spinocerebellar ataxia: SCA11. The impetus for me sharing my story is the upcoming premiere of The Thirteenth Olympian, which is an original musical theater production solely written by myself and developed over the past seven years. The Thirteenth Read More…

My name is Denny and I am 71 years old living in a small town in Northern Minnesota.  I have had a diagnosis of Ataxia (unknown origin), for twelve years. An avid outdoor sportsman, I love hunting, fishing and was a passionate long-distance runner. As the past twelve years have Read More…

One day, about 25 years ago, I suddenly saw double after the second sip of white wine. Then I started seeing double not only when I drank wine, but also when I was tired mentally or physically. After the Basel University Hospital in Switzerland tested me negative for all the Read More…

“His Light Endures”: Honoring Dušan Through Art and Advocacy By Dr. Nanette Presswell My partner Dušan was an extraordinary person—deeply creative, endlessly curious, and full of imagination. He had a passion for life and a restless mind that never stopped asking questions, especially about the rare illness he lived with: Read More…

My Ataxia Journey: Sailing Uncharted Waters My name is Marius, and I live in Romania. I’m 64 years old, and I’ve always been an active, independent person who enjoyed thinking clearly and moving freely. For over 40 years, I worked as a shipping electrical engineer—until I retired in May 2024. Read More…

I have a history of Ataxia. On my father’s side, all aunts and uncles are affected, their offspring too. We all have Ataxia. I was just diagnosed in 2025. I feel ok, just scared. I’m praying for gene therapy or any medication. When Were You Diagnosed? Which Type (If Known)? Read More…