The Night We Watched ‘Stand by Me’ and I Cried
About five years ago, I packed about three DVDs before my buddy and I left for a weekend at a fishing camp. We didn’t plan on watching many movies, I just brought them in case we got bored after…
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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