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Note: This column describes the author’s own experiences with Skyclarys (omaveloxolone). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. The holiday season is upon us. For many, it’s a time to gather with friends and family we don’t see that…

I was 10 years old when I heard the crack of wood on wood that sent my croquet ball flying off into a cornfield. I turned to see my grandfather’s face flash a “gotcha” grin. He’d hit my ball with his, and instead of taking two extra turns, he’d decided…

Have you ever found yourself in a rut? That can happen in most areas of life, such as cooking the same rotation of meals, rewatching your favorite movie or TV show, wearing the same outfits, and so on. Most of us are creatures of comfort, meaning we know what we…

In my journey with progressive Friedreich’s ataxia (FA), I battle a wide array of symptoms. While increasingly poor balance seems to be my most disruptive and frustrating symptom, it’s not the one that keeps me up at night. That would be peripheral neuropathy and the resulting nerve pain and…

“This is your life, are you who you want to be?” the band Switchfoot crooned from my speaker as I put on a random morning playlist last week. Even though I’d heard this song, “This Is Your Life,” hundreds of times, thoughts of identity and destiny clouded my mind anew,…

A couple weeks ago, I wrote that I was planting bulbs in my garden. I’m still doing that because I always buy too many. They’re just too beautiful for me to pass up! OK, I could pass them up, but I indulge myself. Every fall, I feel overwhelmed. But as…

Holding the phone to my ear, I exhaled slowly before speaking into the receiver. I’d dreaded getting this appointment on our calendar and had been waiting on hold to talk to a hospital scheduler. Some trips to the hospital are harder than others when managing my 12-year-old daughter Amelia’s…

I’ve been thinking a lot about the stories I tell myself about my life, as they can make a big difference in how I feel. Telling myself a productive story has especially helped me in my 43-year journey with Friedreich’s ataxia (FA). As an example, I finally got a…

I was diagnosed with Friedreich’s ataxia (FA) at the age of 25. What led me to that diagnosis was a quest for answers about why I was losing my athletic abilities. I was always very active, participating in cheerleading, swim team, softball, volleyball, track, and any other sport possible.

Last week, I had a bump in navigating my Friedreich’s ataxia (FA) road. The wheelchair I use because of my FA symptoms went offline. I use a Whill C2 wheelchair, and I love it. I’d love not needing a wheelchair a hell of a lot more, but a…

Why did I write a children’s book? I’m not sure, but I know firsthand that being diagnosed with a rare disease is profoundly isolating. Because I didn’t feel I could voice that at the time, my book will now speak for me, helping others who might feel isolated, too. At…

While attending a recent Friedreich’s ataxia (FA) symposium, I tried, as I always do, to take in the science. I’m grateful that the annual symposium, held by the Friedreich’s Ataxia Research Alliance (FARA) and the Friedreich’s Ataxia Center of Excellence at the Children’s Hospital of Philadelphia, always moves…