Serena Lawrence hired me as a columnist for Bionews Services. I badgered my friend Frankie, who writes the column “Fighting FA,” into recommending me. She gave my name to Serena, who walked me through the onboarding process. I was touched by…
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…
My phone alerted me to a text message. “Would you be devastated if we canceled this week?” It was my friend Will, canceling our weekly appointment yet again. I wasn’t upset, but understood the back-and-forth banter of our friendship. I sent…
“But the bird fly! I want jump off the roof!” My 3-year-old mind believed this totally. I stamped my tiny shoe. I had made up my mind and I was ready to take action. My mom had discovered some old feather dusters as she…
“The heart really is an amazing machine,” the technician mused in the dim examination room. I was shirtless on the sterile white bed with seven wires attached to my chest. The wires were connected to a sonogram, which had a screen showing black-and-white images of my…
“I think you got this,” Dr. Landreneau told me. I didn’t know how to respond, and I was too worn out to, anyway. I graciously sipped through the straw in the cup of water he held for me, and silently accepted the two fun-size bars of…
The day I got my big idea, I received a package in the mail. Other than that, it was an average, unremarkable Tuesday. Speaking of unremarkable, the package itself was just that — a thin, brown, rectangle of fraying cardboard, about the size of a throw…
My mom took me and my 10-year-old nephew Andrew with her to the movie, probably because we were the only members of our family who wanted to see the 2019 remake of Disney’s “The Lion King.” Andrew wanted to see it because, well,…
“The Zeego Tales” track the wonders of my new life with my service dog, Zeego. “Hurricane Barry” sounded innocent enough — more like a goofy uncle than a scary predator. After making landfall in Louisiana, the hurricane was renamed a tropical storm, which is what reached my…
“I’d give all of my degrees to write as powerfully as Melville,” Dr. Cicardo mused. She had read a passage from “Moby-Dick; or, The Whale“ aloud to her small college class. She reminded me of a proud songbird who recognizes the beauty…
My unease kept growing on the first day of this evening class during my third semester of college. The professor hadn’t shown up yet, so we were a small group of seven or so students sitting around a long table in a small classroom in Griffen Hall, the…
Finding a job when you are disabled is challenging. The search leads to frustration, and in my case, shame. I couldn’t find a position, even with decent grades from college and grad school. I sent out hundreds of résumés, attended dozens of job interviews, and moved…
An online friend recently commented that living with FA is a “Sisyphean dream.” I haven’t been able to stop thinking about that. At first glance, the idea seems futile, nihilistic, and ultimately negative. However, I didn’t take it that way. Through the…
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