First in a series. When I broke, fractured, and dislocated my ankle in 2018, I earnestly prayed that it would be my first and only surgery resulting from a fall due to poor balance and coordination — symptoms of my Friedreich’s ataxia (FA). I hoped those two reconstructive plates…

Scientists at the University of Oxford are embarking on five pioneering research projects — together backed by more than half a million dollars in funding — that aim to advance the discovery of new treatments for Friedreich’s ataxia (FA). The new projects are being funded by the Oxford-Harrington Rare…

Frustration is found around every corner in my life with Friedreich’s ataxia (FA). I get frustrated about many things, macro and micro. This can range from the inaccessibility of public spaces (macro) to struggling to find the armhole in my hoodie when I get dressed in the morning (micro).

Winter is hard on me. The snows of January were incredibly beautiful, but the gray skies have left me feeling worn down and tired. The winter and cold weather are also hard on Amelia, our 13-year-old daughter with Friedreich’s ataxia (FA), and she does require an extra level of…

My high school emo self would feel deeply recognized in this column. I’ve always resonated with the eeriness of the 2001 film “Donnie Darko”; it’s a darkness that isn’t loud or theatrical, but rather solemn and quiet. It’s the kind that settles into your thoughts and asks questions without offering…