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.
“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…
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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…
Years ago, I wrote the column “Becoming the Miracle We Seek,” and I’ve been reflecting recently about its portrayal of an early part of my journey, when I wanted prayer to bring me a miraculous healing…
“Time is a flat circle. Everything we’ve ever done or will do, we’re gonna do over and over and over again … forever.” — Rust Cohle (Matthew McConaughey), the pessimistic and existential homicide detective in “…
As our parents know, those of us with Friedreich’s ataxia (FA) persevere through all of the challenges life throws our way — and there are many. I’m proud to belong to a group of such scrappy and fierce…
My dad, Freddie, and Ethan, my manager here at Bionews (the parent company of this website), sat on either side of me as we awaited the opening session of the National Ataxia Foundation‘s (NAF) annual conference on the…
I was in high school when I first encountered a famous line by Shakespeare’s Hamlet: “There is nothing either good or bad, but thinking makes it so.” At the time, I thought it was relativistic nonsense. I believed…
If there were a Mount Rushmore of Friedreich’s ataxia (FA) advocates, it would depict four action shots of Kyle Bryant. Kyle, 42, is a trailblazer in the FA community, and his positive, encouraging attitude is infectious. I’m lucky…
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…
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,…
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…
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…
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