Real + Rare Stories
See the Life.
Not the Label.
Real + Rare Stories shares the lived experiences of people with Duchenne— not as symbols with tidy storylines, but as individuals with full, complex (and sometimes messy) lives. We are deeply grateful to the people featured here who have shared their triumphs, their struggles, and their everyday moments. Their authentic stories, rooted in reality but driven by possibility, help us move the conversation beyond a diagnosis.
Meet Caeden
BIM technician + competitive athlete
“I play Volt Hockey with the Boston Whiplash. It’s fun to be part of a team sport. There aren’t many team sports for kids with Duchenne.”
Meet Jake
Writer + author + advocate
“Fashion isn’t just getting dressed in the morning. It’s a way for me to express myself.”
Meet Joey
Extreme adventurer + community volunteer
“I have my obstacles, by I try not to let that stop me. Even being in a chair, I try to do things that everyone else could do.”
