I first encountered a service dog accompanying a person with Friedreich’s ataxia (FA) three years ago. I had met my friend and fellow FARA ambassador Andrea and she had her beautiful black Lab, Ramada, with her. I could tell right away that Ramada was more…
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.
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Sometimes when I think my own little victory is simply about existing, I imagine myself answering questions that my 14-year-old self would’ve loved to have asked if he could see me now. I’m talking about the kid who was just beginning to understand Friedreich’s ataxia (FA) after reading about…
My unharnessed wheelchair swerved unexpectedly. I reached out to grab onto something so that I wouldn’t flip over. Riding in the back of my former wheelchair-accessible van was challenging. It had been adapted for a power wheelchair, but after grad school, with no big…
Sitting at my computer in my room, I barely noticed that everything had gotten dimmer. It wasn’t until I looked up that I noticed that one of the four bulbs on my ceiling fan was smoky gray and lifeless. I rolled my eyes at the slight inconvenience, then…
I look forward to lazy Sundays. Nothing feels more familiar, more like my childhood, more like home. I brush aside any work or obligations, finding comfort in choosing to do nothing. So, whether I’ve been super productive and finished all my work earlier…
I’ve been down this road before and it doesn’t end up anywhere good. Following that thought, I swallowed the pill laid out for me and rushed to the bathroom to finish getting ready for school. As a teenager, I was pretty ambivalent.
The theater was packed. It was unseasonably warm for February in Washington, D.C., and my Cajun blood was thankful. The details of that Sunday night in 2018 may have blurred in my memory, but the overall message from that week has stayed with me.
I find it easy to identify myself as a person with Friedreich’s ataxia (FA). In light of the significant effects that FA has on my life, I have no problem acknowledging myself as “Matt Lafleur, a guy with FA.” Full stop. But as I get…
A small wooden trinket hangs on the back of my wheelchair. It’s a navy blue anchor with hand-painted white letters: “Cure” is written down the anchor’s stem and “FA” at its base. A rustic brown cord loops through the top of the ornament…
Before I had a smartphone to help me pass the time, I was OK. I was easily entertained in waiting rooms, whether I read outdated magazine articles or focused on a TV with the volume either blaringly loud or so quiet that I’d have to strain to hear…
Sometimes we prefer not to be seen. I know how that feels. Growing up, I loved being almost invisible, whether I was pretending to be a spy or playing one of my favorite games with my cousins, hide-and-seek in the dark. I…
This isn’t where I’m supposed to be, I thought. My power wheelchair’s mechanic whine echoed through the underbelly of the LSU football stadium, known by Tiger fans as Death Valley. As I rolled through the Valley of Death, the lump in…
Bionews Services is launching a new project on Jan. 22: the Friedreich’s Ataxia News Forums. This will be a place for all of those affected with FA — patients, caregivers, family members, close friends, and significant others — to sign up, post, and comment on messages about…
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