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.
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…
Read more
Spoiler alert: In this column, I’ll review the popular Netflix movie “Bird Box.” I explore the movie’s ending. If you like suspenseful sci-fi movies, I recommend watching it first, then returning to this column.
“What’s your resolution?” This time of year, redefinition is almost a buzzword. Resolutions and goals are a hailstorm assault on social media. As the calendars mark another complete orbit around the…
Writing this column has really been a joy for me. A significant source of worry with a progressive disorder like Friedreich’s ataxia (FA) is the difficulty of…
On any typical day at my middle school, the closer you were to the bench, the higher your social status. It was a cheaply made concrete bench, painted over at least…
Sometimes I use my introversion as an excuse. It’s safe and secure; it’s familiar not to expose myself to unfamiliar situations. I find safety and comfort in…
Drowsily and with great effort, I hoisted the top half of my body upright in the hotel bed. Before I drifted off, I groggily but sincerely asked my friend Sajid…
There is something magnetic and almost hypnotic about a bonfire, I thought, as the unexpected snap of a burning stick spooked us all. My small cluster of shadowy friends gathered…
It doesn’t make sense, and I’ve given up trying to figure it out. It’s a silly video sponsored by a chewing gum company that paid…
Last in a series of reflections on a recent vacation to Turks and Caicos. Read previous reflections here. “I began my vacation today,” Jake told me…
A continuation of a series of reflections on a recent vacation to Turks and Caicos. In this column, I take a rainy boat ride and am confronted by my uneasiness…
In this reflection on a vacation to the Turks and Caicos Islands, I focus on time spent with my nephew Jace. Check out my earlier thoughts on traveling with Friedreich’s ataxia …
In this reflection on a vacation to the Turks and Caicos Islands, I discuss the purpose of my trip: my incredible mom. Check out my earlier thoughts on traveling with…
Get regular updates to your inbox.
