Member Stories

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…

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…

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…

MIRACLE OF LIFE While it’s true that man’s worst enemy has for many years been war, the war I laugh at is the war of haste—like the rush of the newspapers or the out-of-bound cars that transit our streets and become “murderers” of our own destiny. Today, even as technology Read More…

As a 28-year veteran special education teacher at Vandercook Lake Public Schools, I was looking forward to retiring in 2018. I had plans on working part time, gardening, camping, sewing, quilting and volunteering. Shortly after I retired, I began having difficulty hearing, sweating profusely, becoming easily fatigued, and easily frustrated. Read More…

I was diagnosed ataxia in October 2021 at 60 years old The ataxia I am impacted is SCA2 This ataxia is well known in my family since several family members and also my father were impacted by this disease When the analysis confirmed ataxia SCA2,I stopped working My physical fitness Read More…

Back in October of 2024 I was managing a hotel restaurant and came down 2 steps and just kept going without the ability to stop. I finally slammed into a stone wall and sank to the floor. I knew that in the back of my mind I was thinking that Read More…

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…