Sunny Days on Vacation with My Nephew Jace
In this reflection on a vacation to the Turks and Caicos Islands, I focus on time spent with my nephew Jace. Check out my earlier thoughts on traveling with Friedreich’s ataxia here.
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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