Our Stories

My name is Austin Leclaire and I am 21 years old, living with Duchenne Muscular Dystrophy. Since I was a kid, I was aware that I was very different from the others my age. As time went on others began noticing me struggle with normal activities such as riding a bike. After these observations, my mother decided to bring me to the doctors in hopes of finding a diagnosis. My diagnosis was determined and finalized at the age of three. At this time, Duchenne was not well known and therefore the prognosis given from my doctor was grim. The only [...]

When I was 16 years old, I read about a company in Boston that was researching a drug that had the potential to change the trajectory of my cystic fibrosis. At the time, it was in the very beginning phases of research, but the potential still caused tears to well up in my eyes. Up until that point, I spent up to an hour a day on breathing treatments, took countless medications, spent weeks in the hospital once or twice a year, and to top it off, the median age of survival for cf was in the thirties. I imagined [...]