I don’t often write about my life before Friedreich’s ataxia (FA) symptoms severely altered me at age 25. I don’t think that pining for the past is helpful when I wish to stay positive in the present and hopeful for the future. However, one of my old passions is…

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…