Finding the ‘Why’ and Bearing the ‘How’
Reminders of life’s beginning and end kept cropping up unexpectedly this week. My 4-month-old niece was baptized, initiated into her parents’ faith, and began a journey. Days later, I heard…
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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The Day I Began Tracking My ‘Little Victories’
In an instant, my plans and dreams vanished; I was left wandering through life with no set future, and it was scary. I can remember parts of that…
