“Pain is inevitable, suffering is optional,” my husband, Dave, said to me. It’s one of his usual platitudes, and most of the time, I let it pass without much thought. But the last time he said it, I was mired in the mud of self-pity. I heard him and thought,…

Living with Friedreich’s ataxia (FA) means I’ve learned to expect the unexpected. Sometimes when everything seems lined up just right, something completely out of my control will change the script. This week, that something was a spider bite. It started small, a mark on my arm I noticed when…

Four weeks of treatment with the highest tested dose of the experimental therapy DT-216P2 was associated with improvements in functional scores for four people with Friedreich’s ataxia (FA) in an early clinical trial. Data also indicate that DT-216P2 was generally well tolerated and showed biomarker activity consistent with increasing…

I am entering the joyful, frenetic, and sometimes frustrating fundraising season for my Friedreich’s ataxia (FA) patient organization, the Friedreich’s Ataxia Research Alliance (FARA). Every year, I go into it with big numbers in my head about how much money I am going to bring in. Deep down,…

A combination of exercise and an energy-boosting supplement may improve physical fitness in children and adults with Friedreich’s ataxia (FA), although the added benefit of the supplement over exercise alone remains unclear, according to results from a clinical trial. Those who participated in a 12-week program combining aerobic and strength…