Sometimes I Just Want to Be Average
Everyone could see me grimacing uncomfortably. “Here we go again,” I think as I feel an uneasy lump in my stomach. I find myself back in 1999 in a recurring, unpleasant dream I have…
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
From fumbles to fortitude: Learning to quiet my inner critic
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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rideATAXIA Philadelphia, FA Symposium Offer Opportunities to Connect, Raise Funds
“Man, I didn’t realize how great it feels to be in the same room with friends,” I thought late one night as my friends Kayla and Mike were leaving. I hadn’t seen them in…
Do People Want to Hang Out With Progressive Disease Patients?
I’m no stranger to this question, but I wasn’t the one who posed it recently. Ever since I was diagnosed with Friedreich’s ataxia (FA) in childhood, I’ve dealt with its progressively disabling symptoms,…
Like an MMA Fighter, I Won’t Give Up When Things Get Uncomfortable
Tonight’s the big night. He’s been preparing for this moment for a long time. He will win. He has to. In about half an hour, I’d watch Damon Vincent’s first professional MMA fight.
Keeping Hope Alive With New Treatment Research
Research into my rare disorder, Friedreich’s ataxia (FA), seems to me to be on the rise. Though no specific treatments for FA exist, a wide range of ongoing studies is exploring different ways…
I’ve Found a Place I Belong at Unique Fitness
“You ready to get crazy?” Damon Vincent, both the founder of this gym and my personal trainer, greeted me the same way he normally does before my workouts. Sometimes…
The First Time Someone Called Me a ‘Cripple’
The importance of words may be obvious to most, but I am gradually learning that lesson. The first time the power and weight of words struck me was the first time I…
Laughter Is Essential for Rare Disease Patients
As many people living with Friedreich’s ataxia (FA) can tell you, our diminishing handwriting, balancing, speaking, and walking abilities are no laughing matter. Or are they? My sense…
Why I Believe It’s Important to Look a Stranger in the Eye
I’m not proud of this, but I often avoid looking strangers in the eye. An example is when I pass panhandlers or other people asking for money while I’m riding in my…
Betting on Dark Horses
I always try to bet on dark horses. On quiet summer nights near my house, I can hear the buzzer of the nearby racetrack signaling the start and finish of…
Deus Ex Omaveloxolone: Finding Hope With an Untreatable Illness
I really enjoy the times when I can almost forget about the constant degeneration of my body due to Friedreich’s ataxia (FA). But every so often, I fall out of my wheelchair, notice that my speech is especially muddled, or face another stark reminder I can’t ignore: that my FA symptoms are worsening.
I’m Learning to See Myself as an Ataxia Warrior
I’ve never thought of myself as especially strong, or as someone who could identify with a warrior’s personality. Because I face the progressively debilitating disorder Friedreich’s ataxia, I sadly realized that my…
