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The word “pity” has a pretty negative connotation. I don’t know many people who seek pity or want to be pitiable. I certainly don’t aim to make people feel sorrow for my misfortunes. Yet, as I’ve become increasingly disabled by Friedreich’s ataxia (FA) since publicly announcing my diagnosis seven years…

“If you don’t know where you’re going, you might not get there,” reads the first line of a book on my kitchen table. My bosses mailed the book, “Measure What Matters“ by John Doerr, to me as a reading assignment. …

My healthy, rambunctious, and handsome 6-year-old son, Brooks, started his second flag football season this month. He scored two touchdowns this weekend, and I was beyond proud of him. He is such a hard worker who continually amazes me. Kendall Harvey with her son, Brooks, at…

I always took pride in being alone, and I still do, to some extent. That makes letting go of being alone, even just a little bit, feel so strange.  What does “taking pride in being alone” even mean? My rare disease, Friedreich’s ataxia (FA), was probably…

I’ve been thinking lately about my goals for 2021 and my vision for life. This is a fairly common mental exercise, given the recent start of another calendar year. However, there is nothing routine about the circumstances or environment encompassing life right now. One word that’s…

Friedreich’s ataxia (FA) is a cruel, relentless, lifelong battle. It can make good days hard and bad days intolerable. When people tell me I am “inspiring” or ask how I remain so positive and happy in the face of FA, I am always baffled, and usually fumble my answer.

My arms couldn’t hold my body up in a crawling position any longer, so I face-planted on the matted floor in defeat, yet with a small, self-satisfied smile. As I lay collapsed on my stomach, my physical therapist towered above me and yelled triumphantly, “You just crawled across…

The Friedreich’s ataxia (FA) community has been abuzz with excitement recently. The first two phases of a clinical trial sponsored by Reata Pharmaceuticals showed that the oral therapy omaveloxolone (RTA 408) is safe and led to improvements in some participating patients. However, the U.S. Food and Drug Administration (FDA)…

Sticking to a New Year’s resolution may better our lives in the short-term, but thinking about what I will be remembered for matters more to me. So, instead of committing to a resolution this year, I am focusing on the concept of a legacy. After I am gone,…

It’s obvious that things don’t change simply because we turn the page on another calendar year. Typically, the early weeks of a new year set the stage for considering new goals, establishing new disciplines, and developing new habits for pursuing what is important to us.

Over the holidays, we spent time with family that we don’t see regularly. I get so wrapped up in my own excitement to see my loved ones that I often forget that they haven’t seen me in a while. Or more specifically, they haven’t seen my Friedreich’s ataxia (FA) symptom…

Despite whatever successes we saw in 2020, the year mostly will be remembered for a pandemic that affected almost everyone on the planet. Though the death, financial hardships, joblessness, and isolation due to COVID-19 are devastating, humanity may find an end to this horror soon.