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…

Researchers have developed a new type of gene therapy that, according to the findings of a new study in animal models, may correct both nerve and heart problems in people with Friedreich’s ataxia (FA). The one-time treatment, administered via a spinal tap, was designed to simultaneously target the heart…

In December 2025, my husband, Kyle, and I traveled to the Children’s Hospital of Philadelphia to see neurologist David Lynch. It was the first time I had traveled for Friedreich’s ataxia (FA) care since transitioning to predominantly using a wheelchair. Therefore, much of the discussion centered on this transition.