Walking my service dog, Wendy, in the winter poses quite a challenge. When I take her out, she’s clipped to my wheelchair, which I use because of my Friedreich’s ataxia (FA). Then she jogs alongside me. Like most dogs, Wendy is thrilled when she knows she’s going out. Wiggling…

There’s a lot that comes with the territory of having a visible disability, especially if you choose to live your life out loud rather than hide. I never imagined I’d have to make that choice until I was diagnosed with Friedreich’s ataxia (FA) in 2013. Back then, I understood…

Living with Friedreich’s ataxia (FA) involves daily challenges that often go unnoticed by others. Coordination, balance, and speech impairments may be brushed off as simple clumsiness, but the consequences can be more than inconvenient. Put simply, these challenges make every routine task more demanding. Despite these hurdles, I strive…

The National Organization for Rare Disorders (NORD) is seeking participants for its survey-based study Living Rare, which aims to better understand the real-world lived experiences of people in the U.S. with rare diseases. Living Rare, the first large-scale study of its kind in the U.S., seeks to capture the…

I found myself growing uncomfortable as I stood in front of the group. Not because all eyes were on me as a presenter, but because I’d realized I was out of alignment. As the parent of a 12-year-old who was diagnosed at age 8 with Friedreich’s ataxia (FA),…