Bill Nye is back in his lab with NAF and Biogen—breaking down the science of Friedreich Ataxia in a new video series. WATCH NOW
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…
Drug companies must follow a detailed process to build and submit their New Drug Application (NDA) to the U.S. Food and Drug Administration (FDA). You can read more about NDAs in an earlier PrepRARE article here. But did you know that the FDA has its own set of rules to 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…
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…
