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I often struggle with two opposing principles of thought: I have a strong animosity toward Friedreich’s ataxia (FA), and I have a deep gratitude for life because of it. The animosity is easy to understand. Even for those unfamiliar with…

My anxiety kicks in when I go out. Between choosing an assistive device, worrying about the accessibility of the venue, and anticipating stares from others, it can be overwhelming. The anxiety is so debilitating at times that I simply choose to stay home. I didn’t…

Members of the Friedreich’s ataxia (FA) community are waking up each morning with extra grateful and hopeful hearts, thanks to the recent news of a successful clinical trial sponsored by Reata Pharmaceuticals. Ron Bartek, president of the Friedreich’s Ataxia Research Alliance (FARA), shared the groundbreaking results of…

When I was 16, I searched the internet for Friedreich’s ataxia (FA) for the first time. I couldn’t ignore its effects any longer, and I was ready to learn about it. I assumed the treatment or the cure would be expensive and unpleasant. When I discovered…

There is a first time for everything, right? That’s a phrase I often hear and it is true. A baby’s first words, a teenager’s first driver’s license, a first speeding ticket, a first kiss, a first house … the list is endless. A first broken bone…

I recently rediscovered my passion for baking. My hopes and dreams should not be put on hold because of Friedreich’s ataxia (FA). I should not be discouraged from doing what I love. I take satisfaction in knowing I can enjoy an experience like everyone else, even if I have to do…

Is this even worth it? The noisy confusion was almost comical. Luckily, I was next to some friends in a corner of the hotel lobby.  Taking a group picture of people with Friedreich’s ataxia (FA) was complicated. The majority of us were seated in…

The difference between determination and stubbornness is becoming more and more clear. With the recent fracturing of my hip and weeks of inpatient rehabilitation, I’ve found myself teetering on the thin line that separates the two. I’ve always thought of myself as a determined individual; someone…

My family and I recently took an incredible vacation to our motherland, Italy. We have talked about taking this trip since I was a kid, but never had the time or the money. Now that my parents are retired and my brother and I are older, the timing…

My passion for the hospitality and tourism industry has shaped my bucket list. I love to travel and explore new cities. During high school, I traveled to Europe three times with my school musical groups. It was an honor to visit Italy, England, and Ireland. Since being diagnosed with Friedreich’s…

Out of curiosity, I ran an online search of “Kyle Bryant,” one of my best friends. I call him the poster boy for Friedreich’s ataxia (FA), and the search results seem to agree. I scrolled past links to his employee page at the Friedreich’s Ataxia…

If I didn’t know that the endgame for physical therapy is to be fully functional again, it’d be easy to come up with excuses to just stay in bed right now. Physical therapy isn’t fun or easy, but it is a necessary friction. Thankfully, I am…