Growing up with FA while yawning through a superhero movie
As I sat in the darkened movie theater recently, the screen showed a colossal battle filled with too much reliance on CGI. I yawned and checked my watch. Not even halfway into the movie’s…
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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Finding ‘Flow’ in the currents of life with FA
Navigating life with Friedreich’s ataxia (FA) involves traversing an unpredictable landscape where each step presents new challenges. This year began with particular frustration for me, yet I find solace in the unwavering support…
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Approval of 1st FA treatment changed nothing and everything
Melodramatic title aside, Tuesday, Feb. 28, was a nail-biter. The U.S. Food and Drug Administration (FDA) was expected to make a decision regarding the approval of Skyclarys (omaveloxolone) for my rare disease,…
A patient’s perspective on the 1st Friedreich’s ataxia treatment
As of today, the status of Friedreich’s ataxia (FA) has changed from untreatable to treatable, thanks to the approval of Skyclarys (omaveloxolone) by the U.S. Food and Drug Administration (FDA). I…
My sister, who also has FA, finds strength in her family
I’m realizing that a Friedriech’s ataxia (FA) diagnosis is a family affair, and the stories I tell in my column, “Little Victories,” typically offer only one perspective. I tried to broaden that…
The importance of resilience and other lessons from my diagnosis
As the audience gathered last week, again I asked, “Why am I doing this?” They sprawled comfortably on couches and beanbags as they waited on the slightly uncomfortable speaker: me. My friend Loren…
Poetry and My Rare Disease: What Rhymes With Ataxia?
Poetry has always been pivotal, even crucial, to my life’s journey. Maybe that’s fitting for a guy diagnosed with a rare disease. In one survey from 2017, only about 12% of adults…
A Perspective on FA From My Able-bodied Sister
What’s it like to be the only sibling out of three who doesn’t have a rare diagnosis? As I fumble my way through living with Friedreich’s ataxia (FA), I want to know what…
‘Requiem for a Dream’: The Tragedy That Gives Me Hope
The 2000 Darren Aronofsky film, “Requiem for a Dream,” doesn’t pull any punches as it shows the hellish descent of four people into a life of addiction, while the dreams they had…
How an FA Patient Came to Play Fritz in ‘The Nutcracker’
A news article was recently shared and reshared across my social media platforms. It reported that a 9-year-old girl recently performed in an Oklahoma production of “The Nutcracker,” composed by…
The Need to Be Resilient, With or Without Trigger Warnings
“Should I tell my young child that he/she was diagnosed with Friedreich’s ataxia?” Though solemn and heartbreaking, that question is not uncommon. At least three times a year, it’s asked in FA forums…
Finding Hope in a Glass of Cheap Lemonade
Making free “lemonade” at a restaurant is popular with penny-pinching college students, even though it may be legally dubious. Or maybe it’s popular because it’s dubious. Here’s how it works: Step one: Order a…
A Departure From the Avett Brothers: My Body Is Not My Prison
As I was getting ready for breakfast a few mornings ago and listening to a shuffle of random songs, I recognized one that I hadn’t heard in years: “No Hard Feelings” by…
