Member Stories

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…

Ataxia is a family problem. It affects the individual diagnosed of course, but encompasses the rest of the family as caregivers, and those who must wonder and wait if it will continue on to their generation. I am a second generation Ataxia SCA6 patient, my father and his only sibling, Read More…

My name is Lisa Jockims. I am 56 years old and I live in Saskatoon, Saskatchewan Canada. I have been recently diagnosed with Ataxia Telangiectasia. Throughout my adulthood I have had many challenges and struggles. I have had a form of Cancer in my leg , Breast Cancer, Brain Tumor, Read More…

Hereditary Ataxia and Genetic Testing: A Family Affair Original Member Story Published in Generations – Spring 2009 When I was given the diagnosis of “Spinocerebellar Ataxia, type unknown” in 2005 by a local neurologist (based on my neurological exam results, MRI test results which showed cerebellar atrophy and family history), Read More…