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
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…
Written by: Sophia Salemi, BS Edited by: Celeste Suart, PhD Article highlight: Scientists have discovered that changes in the POU4F1 gene can cause a very rare hereditary ataxia syndrome with first symptoms beginning in childhood. A new patient registry is now open, giving families the opportunity to join a growing community Read More…
Biohaven announced that it has received a Complete Response Letter (CRL) from the U.S. Food and Drug Administration (FDA) for the New Drug Application (NDA) seeking approval of VYGLXIA (troriluzole) for the treatment of spinocerebellar ataxia (SCA). A CRL means the FDA has completed its review and determined that the Read More…
Written by Taylor Stolberg Faces of Ataxia Research highlights scientists whose work is supported by grants from NAF. Each story shows how our donors are fueling discoveries that bring us closer to effective treatments and a cure for Ataxia. Meet the Researcher Project title: Graduate Research Fellowship (2024): “Elucidating cholesterol 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…
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…
