Member Stories

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…

Hi! I was diagnosed in 2010. I worked for a well known insurance carrier. I had breast cancer in 2008 and received Chemo therapy, radiation and Herceptin. The docs are not sure why I have this, but they think the treatment I received may be the problem. It does run Read More…

Hello everyone, I used to live away from my home in Pokhara with my 3-year-old son for my job. I was a very confident girl — I loved dancing, not professionally, but for my own happiness. For me, it was a form of yoga and meditation. I had always been Read More…

I’m Sandra. I’m 50 years old and based in Hamburg, Germany. There are some things I found out and experienced, and for I found them help- and hopeful I want to share them with you. It was last year in March when MRI-images showed a light left-sided cerebellum degeneration. That Read More…

My name is CoCo from Hong Kong, and I am an adaptive golfer currently ranked under the World Ranking for Golfers with Disability (WR4GD). I live with Idiopathic Ataxia, a condition that affects my proprioception, coordination, and lower limb control. I walk with elbow crutches. It is a part of Read More…

On October 21,2024 my life changed forever because my diagnosis of Ataxia. The neurologist said I had two options to go to Rochester Mayo or The U of M. I chose the University since my wife had to do the driving and it was closer also. So I scheduled at Read More…

The first sign something was not right was in 2012, when I found I could not carry a cup of coffee across an open space without spilling it. It took over year to get a diagnosis, and I was told there was no cure, or even treatment. Physiotherapy was recommended. Read More…