The Ataxia Community Comes Together in Orlando April 9–11, 2026 for the Annual Ataxia Conference! LEARN 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…
The National Ataxia Foundation seeks a compassionate, experienced, and licensed clinical professional to serve as Community Services Manager (CSM). This role will develop and lead a national network of contracted social workers who will provide direct support to the Ataxia community. The CSM will oversee program development, train contracted staff 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…
Minneapolis, MN (September 25, 2025) – The National Ataxia Foundation (NAF) today announced the launch of The Science Guy: Back in the Lab for FA, a new educational campaign to raise awareness and understanding of Friedreich ataxia (FA), a rare, genetic disease. The campaign, in partnership with leading biotechnology company, Read More…
Guest Author: Beverly Nelson Becoming a caregiver for someone with ataxia changes the rhythm of your days almost overnight. The mix of medical responsibilities, emotional support, and constant problem-solving can be both meaningful and exhausting. Without a plan for your own well-being, the role can quietly erode your health and 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…
NAF is hiring a full time Regional Development Manager. This person will be responsible for generating revenue via traditional non-profit revenue streams including major gifts, recurring gifts, planned gifts, individual giving, corporate and foundation giving, memorials, third party fundraising events and sponsorship procurement. This position will also assist with the 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…
