Despite the Storm, rideATAXIA Dallas Was Worth It
My eyes shot open in the middle of a pleasant dream. The scene was familiar: There was a pool, perhaps a beach? But the dream vanished shortly after I woke up. The light…
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
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, “This Is Your Life,” hundreds…
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Finding Friends, Family, and Vulnerability at rideATAXIA Dallas
On the long drive home from rideATAXIA Dallas, I asked the driver, my buddy Ryan, for his overall takeaway from our weekend trip. “I feel like I understand you and your life a little better,”…
Because Saying ‘No, I Won’t’ Just Isn’t My Style
They couldn’t understand why I wouldn’t try, and my absolute refusal surprised me, too. Downtown Los Angeles in 2005 was unfamiliar to me, in a good way. It was a combination of sunshine and sea…
Waiting to Meet My New Service Dog
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,…
Consistency in the French Quarter with FA
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…
Death, My Constant Companion
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…
Decompressing from Life’s Complexities on a Lazy Sunday
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,…
I’ve Learned to Face My Reality While Hoping for an FA Cure
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…
An FAer’s Reflection on Rare Disease Day
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…
I’m Both an FA Patient and a Cajun During Mardi Gras
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…
The Anchor on My Wheelchair from My Steadfast FA Friend
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.
In the Waiting Room with FA
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…
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