Scientists have created and validated stem cell lines derived from an adult with Friedreich’s ataxia (FA) carrying an ultra-rare disease-causing mutation, a study reports. Because patient-derived stem cells can be transformed into any cell type — including muscle and nerve cells, which are most affected in FA, a rare…

“Is it something sad?” Amelia always asks this question when I tell her we need to talk. Like an anxious employee worried about being in trouble with the boss, Amelia fears hearing sad news. My beautiful 13-year-old daughter, who has Friedreich’s ataxia (FA), has a very sensitive heart. Usually…

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…