It had been a few years since Sean Baumstark, who is living with Friedreich’s ataxia (FA), came up with the idea of a cruise for people who, like him, have a rare disease. It wasn’t easy, coordinating it all. And it wasn’t until everyone was finally aboard, meeting…

Have you ever had a thought pattern become an unshakable way of thinking about yourself? A few months ago, I grew sensitive about my speech. I was convinced that my Friedreich’s ataxia (FA) had become overpoweringly obvious and taken away my ability to speak intelligibly, and my confidence took…

The 2026 Annual Ataxia Conference (AAC) will bring participants together next week for a three-day event of learning, connection, and fun-filled activities. The meeting, organized by the National Ataxia Foundation (NAF), will be held April 9-11 at the Rosen Centre Hotel in Orlando, Florida. Advance registration…

A brain imaging marker linked to increased activity of support cells in the brain may help detect early disease activity in children with Friedreich’s ataxia (FA), a study found. Researchers using an advanced MRI technique found that levels of the marker, myo-inositol, were elevated in regions involved in movement,…

Yesterday, I woke up with a long to-do list, but I didn’t want to get out of bed. Simply sitting up in my cozy, adjustable bed and watching YouTube all day was what I wanted. The covers were calling me to stay. But, like most people, I had to pee,…