Note: This column includes a mention of suicide. Resources for help are listed at the end. I grew up with an unwritten rule that wasn’t taught by my parents but seemed to be what society expected: “Whatever difficulties you face, keep them to yourself. Everyone else has enough difficulties to…
Little Victories — Matthew Lafleur
Louisiana native Matthew Lafleur’s life isn’t what he expected following his 1994 diagnosis of Friedreich’s ataxia, a rare and debilitating disorder. Instead of giving up, he obtained degrees in English and mental health counseling. Unable to find a job after grad school, he applied to write a column at Friedreich’s Ataxia News. Years later, he now serves as the Associate Director of Patient Engagement for that site’s parent company, Bionews. Through his column and his role in patient engagement, Matt hopes to elevate the often overlooked voices of the rare disease population. We are not victims. We matter.
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A race has ended, and this time, I lost. I want to be honest, even though honesty feels especially heavy right now. I’d hoped to win this race. I really did. I’m deeply disappointed — not the explosive kind that demands attention, but the kind that settles in like fog,…
My interest was piqued this month when I read about positive Phase 2 trial results for a drug from Larimar Therapeutics, as it’s a clinical trial that I’ve been closely following. This potential treatment for my rare disorder, Friedeich’s ataxia (FA), is especially exciting for me because it…
I’ve never been a fan of making big resolutions at the start of a new year. I don’t like the idea of a “new year, new me.” I think the reason I’m harsh on New Year’s resolutions stems from the onslaught of my progressive disorder, Friedreich’s ataxia (FA). As…
Bionews CEO Chris Comish often repeats the phrase “We’re just getting started.” He’s said it so many times that it’s become an unofficial motto at the company. But the phrase is more than a well-wish; it’s also a call to action and a reminder to stay the course because…
When life gets overwhelming, my mind will often escape the reality before me, at least momentarily. I’m unsure if these brief internal retreats are daydreams, escapes, or the products of an overactive imagination; maybe all of them. But I’ll refer to this tendency as “dreaming” in this column. To me,…
“Friedreich’s ataxia.” After long months of visiting different kinds of doctors all over my home state, those were the words the neurologist uttered. My family and I had desperately sought a medical reason why I’d begun to doubt and question my functioning, even as my 9-year-old peers were getting more…
Friedreich’s Ataxia News proudly presents “Beyond the Friedreich’s Ataxia Basics,” a live, virtual roundtable discussion taking place at 6 p.m. EST Nov. 1. This free event is open to all audiences — patients, friends and family members, caregivers, medical professionals, and anyone curious about the current state of the…
I’m no cartographer, but the adventurous part of me has always awakened when I hear about the saying supposedly inscribed on ancient maps: “Here be dragons.” Even though historians now believe that the phrase was only used on a single 16th-century globe, the rumor that most medieval maps warned…
Note: This column describes the author’s and interviewee’s own experiences with Skyclarys (omaveloxolone). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Hope is crucial for those in the Friedreich’s ataxia (FA) community. For me, facing a rare degenerative…
The word “enduring” has been on my mind a lot lately. I was thinking about that concept as I saw friends with Friedreich’s ataxia (FA) post on social media about the approval of Skyclarys (omaveloxolone), the first-ever treatment for our disorder. Even though it’s worth celebrating…
The recent approval of Skyclarys (omaveloxolone), the first treatment for Friedreich’s ataxia (FA), is game-changing. But I’m frustrated that there’s still a long journey ahead for me. When this drug was approved Feb. 28, I celebrated in a column posted minutes after the announcement. A few…
From its start, this column has mostly focused on my own reflections and experiences with Friedreich’s ataxia (FA). Although firsthand perspectives are important, navigating a condition like FA isn’t a solitary effort. That’s why I’ve been asking my immediate family members to share their thoughts. My columns have…
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