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.
If there were Olympic medals for complaining, I’d have an impressive trophy room by now. For most of my life with Friedreich’s ataxia (FA), I didn’t realize I was “training” for that, because complaining had become second nature to me. I didn’t always do it loudly; it was often…
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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…
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 glass of water with lemon slices. Step two: Mix the water, lemons, and a few packets…
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 The Avett Brothers. For the first time in quite a while, the opening ran…
Last week, a college buddy of mine, Max Harrington, filled in as my caregiver so that I could take a memorable trip to New York City. We were there to attend the annual MM+M Awards, which honor achievements in healthcare marketing and communications. I was joined by several…
Dear M&M’s, As a longtime fan of your candy, I want to say thank you. Your candy-coated chocolates have been a positive memory for me since before I could walk. The memory of my grandfather is forever tied to M&M’s because he gave me a brown bag of…
I read the headline on social media and shrugged: “Queen Elizabeth II, Britain’s Steadfast Monarch, Dies.” My Thursday continued mostly unaffected. I normally don’t pay much attention to the British royal family, but in the past few days, I haven’t stopped thinking about the queen’s passing. Perhaps writing about…
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