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Friedreich’s ataxia is a daunting, life-altering diagnosis. It changes every aspect of your life, especially as your disease progresses. It changes your ability to do the things that once came easily, and takes away your ability to do the things your peers can do without thinking twice. I…

I’ve been thinking a lot about identity lately. Who am I to myself? To others? Is Friedreich’s ataxia fundamental to who I am? Would I still be me without that rare diagnosis? Maybe I can only…

Because of my Friedreich’s ataxia (FA), I use a walker as a mobility aid. The walker helps provide the stability that I can’t accomplish on my own, which helps prevent falls. My walker is with me wherever I go, so I am pretty well-known for being “the mom…

It doesn’t make sense to be this fragile, I thought, as my stomach dropped and I wanted to … fight? Punch a wall? Sob? I had no logical reason to be upset. Yet, when I overheard a longtime friend on a phone…

I am the proud mother to two children: my 5-year-old son and my nearly 3-year-old daughter. We just celebrated Mother’s Day last weekend. My family always does a wonderful job of making me feel loved and cherished. Annual celebratory events tend to turn me introspective. All weekend, I was…

The day was cruelly beautiful. It was the first time I had ventured out of the house in over a month. I gazed out my van’s windows as tree branches and fields of grass whizzed by — vibrant, springtime green. The sky overhead was crisp…

I’m certain there are many things everyone can agree on: Planet Earth is round, what goes up must come down, and pineapple does not belong on pizza. You see, inarguable, right? Although many might agree, there are strong believers that our planet is…

May is an exciting time for the FA community. It’s Friedreich’s Ataxia Awareness Month, a time for all of us who are affected to let our voices be heard! Additionally, May 16 is Friedreich’s Ataxia Awareness Day. Friedreich’s ataxia affects about one…

The biggest things in our lives tend to occupy most of our brain space, such as family, significant others, friends, jobs, goals, pets, finances, plans, and so on. I have an additional big thing: Friedreich’s ataxia. Before I was diagnosed with FA in 2013, I was just like…

About a year ago, I wrote a “Little Victories” column about the 2018 Netflix movie “Bird Box.” I was struck by its message that people with disabilities were best able to survive an apocalyptic scenario. Although the real-life coronavirus…

Part of the personal process of accepting my Friedreich’s ataxia diagnosis was deciding to do something proactive to try to secure a better, disease-free future for my fellow FA patients. An integral part of my efforts to make a real difference is the event rideATAXIA. rideATAXIA takes place…

On an otherwise typical day of my self-quarantine, I careened to the side of my wheelchair and couldn’t stop. I wasn’t sure if the culprit was a coughing fit or an inability to correct my balance. After the initial thud and the…