Little Victories - a Column by Matthew Lafleur

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 run time and I was already losing interest. I was surprised that the scene bored me…

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, Friedreich’s ataxia (FA). A long and bumpy road had led to this decision, and the…

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 still find it unbelievable that FA has a treatment. I’m reminded of high school, when one…

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 view when my sister Kiki shared her perspective in my column last month. She is…

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 had asked me to speak to the students at his nonprofit, Hope for Opelousas, a…

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 reported reading poetry in the last year. My disorder, Friedreich’s ataxia (FA), affects 1…

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 life looks like to my able-bodied sibling — my youngest sister, Mckenzie, who went by Kiki…

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 for their lives become further and further out of reach. Although it’s mostly overlooked today and…

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 Tchaikovsky. Typically, there’s nothing newsworthy about that. “The Nutcracker” almost always features children in its first…

“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 and online groups, and debate follows. It reminds me of my own childhood diagnosis of…