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.
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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The recent approval of Skyclarys (omaveloxolone), the first treatment for Friedreich’s ataxia (FA), is game-changing. But I’m frustrated that there’s still a long journey ahead for me. When this drug was…
From its start, this column has mostly focused on my own reflections and experiences with Friedreich’s ataxia (FA). Although firsthand perspectives are important, navigating a condition like FA isn’t a solitary effort.
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…
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,…
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…
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…
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 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…
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…
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…
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…
“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…
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