Though my diagnosis was difficult, I decided to write my own story
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…
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
Overcoming our Kafkaesque nightmare with a ‘MetamorFAsis’
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…
Read more
Finding the through lines in life with FA, even as my goals change
“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,…
Writing a children’s book about FA, now soon to be published
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…
The misguided miracle cure that kept me going
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…
A new perspective on circular time: Introducing Matt’s Rare Journey
“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…
An open letter to parents whose children have FA
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…
From ‘Science Guy’ to ataxia advocate, I’m with Bill Nye
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…
How my views on optimism and pessimism have evolved due to FA
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…
FA advocate Kyle Bryant rides again for Team FARA and our community
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…
Why I’ve decided to see a mental health counselor
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…
Braving the new world of 2024 for Friedreich’s ataxia treatment
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…
