Louisiana FA Community Helps Ease Loneliness
“Is everyone here?” Dr. Grabczyk asked from the head of the table. The old restaurant buzzed with the lunchtime rush, but the gathered members of the Louisiana FA community — five of…
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
‘Almost FA-mous’: The sky’s the limit for FA awareness
I recently watched “Almost Famous,” a comedy film from 2000 that portrayed the fictional story of a music journalist and a rock band that longed for recognition. I didn’t expect the movie to remind…
Read more
Planning for My Unpredictable Future
“I can’t believe we found this,” I said to my friend Jennifer, holding the manila folder against my lap. “Do you think we should open it?” The sun shone brightly…
Little Victories Really Matter with FA
Editor’s note: Please be advised that the topic of suicide is addressed in this column. Resources for help are listed at the end of the column. *** Despite all of…
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…
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…
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…
