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…
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
From fumbles to fortitude: Learning to quiet my inner critic
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…
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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…
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…
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…
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…
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…
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…
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…
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…
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”…
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…
Sometimes FA Makes Me Want to Be Invisible
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…
