I intended to publish a column in August that brimmed with hope and included a passage by my friend and fellow columnist Elizabeth Hamilton. We wrote about vatiquinone, which was up for approval with the U.S. Food and Drug Administration (FDA). It had the potential to become the…
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.
Featured Post
Aug. 13 marked eight years since I first started working with Bionews as a columnist for Friedreich’s Ataxia News. Anniversaries have a way of making us look backward, and this one has me thinking about how different my career looks from the one I once imagined before Friedreich’s ataxia…
“This might be even better than a Kubrick,” I thought as “The Shawshank Redemption” appeared on my screen. I was FaceTiming with my manager, Ethan, and his son, who live in upstate New York — 1,461 miles from my South Louisiana home — and we were streaming the film…
My hair is finally the way I like it. In the world of Friedreich’s ataxia (FA), I celebrate every little victory that comes my way. I grinned — cheesily, vainly — as I rubbed an almond-sized glob of men’s hair gel between my fingertips and worked it into the…
There’s a distinct stillness in waiting — a breath held between hope and reality. As I’m writing this, my May 13 appointment is approaching, and I find myself suspended in this limbo, where the future teeters between two possibilities. Living with Friedreich’s ataxia (FA), where progression often feels…
Note: This column describes the author’s own experiences with Botox injections. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Living with Friedreich’s ataxia (FA) is a journey that tests the limits of one’s resilience. The progressive nature of this…
Living with Friedreich’s ataxia (FA) involves daily challenges that often go unnoticed by others. Coordination, balance, and speech impairments may be brushed off as simple clumsiness, but the consequences can be more than inconvenient. Put simply, these challenges make every routine task more demanding. Despite these hurdles, I strive…
Navigating life with Friedreich’s ataxia (FA) involves traversing an unpredictable landscape where each step presents new challenges. This year began with particular frustration for me, yet I find solace in the unwavering support of the FA community and unexpected inspiration from the animated film “Flow.” Early 2025 was daunting.
I recently watched “Almost Famous,” a comedy film from 2000 that portrayed the fictional story of a music journalist and a rock band that longed for recognition. I didn’t expect the movie to remind me of the Friedreich’s ataxia (FA) community, but it did. That’s because we’re also a…
When I introduce myself, I always say: “I’m Matt, and I have Friedreich’s ataxia.” It’s not just a fact; it’s a part of the story that’s shaped me. Part of me can’t stand thinking that a progressive disease dictates my life. That part of me refuses to let it…
I tend to find messages of hope and resilience in bleak stories. Take, for instance, my column about finding hope in the objectively depressing movie “Requiem for a Dream.” Similarly, another unlikely source of inspiration comes from Franz Kafka’s short story “The Metamorphosis.” Last week, when life…
“This is your life, are you who you want to be?” the band Switchfoot crooned from my speaker as I put on a random morning playlist last week. Even though I’d heard this song, “This Is Your Life,” hundreds of times, thoughts of identity and destiny clouded my mind anew,…
Why did I write a children’s book? I’m not sure, but I know firsthand that being diagnosed with a rare disease is profoundly isolating. Because I didn’t feel I could voice that at the time, my book will now speak for me, helping others who might feel isolated, too. At…
Explore more columns
Discussion
Discussion
Discussion