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Rare Disease or Not, Only I Can Define My Success

I’m approaching what can easily be labeled the midpoint of life for the so-called average person. Of course, such averages rarely take rare disease into account. But even without the progression of Friedreich’s ataxia (FA), living to (almost) 40 is no easy task. I mean, just think about…

I’m Learning to See Myself as an Ataxia Warrior

I’ve never thought of myself as especially strong, or as someone who could identify with a warrior’s personality. Because I face the progressively debilitating disorder Friedreich’s ataxia, I sadly realized that my physical strength, like the rest of my capabilities, will dwindle over time much more quickly than…

A Springtime Perspective on What FA Has Given Me

I love springtime in Texas, and all that comes with it: baseball season, wildflowers, rodeo season, longer days, warmer sunshine, home projects, live music at local restaurants, and more. Everything feels happier and more vibrant. This year, springtime feels different. We had a historic and catastrophic snowstorm at the end…