Rare Disease Day Isn’t Only About Spreading Awareness
As the end of February approaches, Rare Disease Day, held annually on the last day of the month, is exciting for most of those who live with a rare disease. But every year,…
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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‘Almost FA-mous’: The sky’s the limit for FA awareness
I recently watched “Almost Famous,” a comedy film from 2000 that portrayed the fictional story of a music journalist and a rock band that longed for recognition. I didn’t expect the movie to remind…
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I Can Still Walk in My Dreams
Often I’d rather dream than face reality. I reflect on this most mornings, when the sun rises enough to turn the sky pinkish-blue and my eyes flutter open. Typically, I wake up on my…
I’m Shifting Away From an Either-or Mindset
A few mornings ago, I groggily looked up and saw my reflection in the mirror. Because my vanity is wheelchair-accessible, I can see myself when I’m brushing my teeth and fixing my hair. I…
Becoming the Miracle We Seek
“You’re cured, Matt! You’re cured!” yelled some friends, their shouts echoing in the ballroom of my college’s student union almost 15 years ago. I remained sitting in my wheelchair following this Christian…
Self-criticism Silences My Authentic Self
For some reason, the huge tome of American literature that served as my textbook for high school English always opened to the poem, “For the Dead,” by…
rideATAXIA Dallas Was My Last Time Riding — Until Next Year
The long drive back home was uneventful as the sky shifted from a clear blue to an ominous collection of thunderclouds. If it was a metaphor, I was too tired to notice. We drove…
I’m Learning the Balance Between Giving and Receiving
“This isn’t a good start to the trip,” I thought while trying not to topple to the floor. I’d missed my wheelchair seat while trying to transfer into it. I was at the…
Coyotes, Roadrunners, and a Cure for My Rare Disease
Sometimes holding on to hope looks a lot like desperation. I’ve been dealing with the unstoppable progression of my disorder, Friedreich’s ataxia (FA), for most of my life. Since there is no treatment…
Social Distancers and Rare Disease Patients Can Learn From One Another
Although I believed that the COVID-19 pandemic was beginning to wane, the delta variant has caused a huge increase in cases. Social distancing and mask mandates are on the rise again, much to…
How I Hiked Down the Grand Canyon in a Wheelchair
“Are you sure you’ll be OK?” my three friends asked after they sat me on a picnic table, pen in hand and journal before me. It was 2006, and we were on spring break.
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…
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…
