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Some sad news to report:
Austin Leclaire was a remarkable young man with Duchenne muscular dystrophy who raised awareness about his devastating disease, and as a patient advocate, played a pivotal role in spurring the development of the first medicines to treat it. Austin died on Feb. 1, according to an announcement from his family. He was 26.
I didn’t know Austin well, but I first met him in 2012 at an event in Boston organized by his mother, Jennifer McNary, and other Duchenne advocates who were pushing Sarepta Therapeutics to speed up the development of eteplirsen, its first drug to treat Duchenne. I can’t recall any of the speeches made that night, but I have a vivid memory of Austin, then already in a wheelchair, and his younger brother Max, also born with Duchenne and bouncing around the room like a jitterbug, captivating the crowd.
Eteplirsen was a controversial drug, even back then. But what those gathered that night hoped for — as they watched two brothers playing joyfully, waiting impatiently for the adults to stop talking — were new treatments that could end a terrible disease. The event concluded with McNary and the other advocates presenting Sarepta’s then-CEO Chris Garabedian with an hourglass, because in their words, time was something boys with Duchenne couldn’t afford to lose.
Austin was a champion for the Duchenne community. His advocacy work, his optimism, his self-described “raunchy comedy act” and participation in competitive sports — it all inspired people. He was deeply loved by his mom, who was so proud of the man he had become.
“My wish for his legacy is what he would have wanted — for people to remember him loudly. He loved the spotlight and aspired to change the world,” McNary told me via email. “He was an amazing son, big brother, friend and much more. I want us all to remember his contributions to the world because he had every reason to wallow and be selfish but he never complained and did everything he could to serve.”
My condolences to Jenn, Max, and their extended family at this difficult time. Austin had a huge impact on everyone he met and he will be remembered fondly.