What does it really mean to “find your community” after a Duchenne diagnosis?

In this episode of Beyond the Diagnosis: Duchenne Perspectives, we’re joined by Perlita Hains and Rae Lawrence Jones, both mothers in the Duchenne community, for a conversation about the power of connection, shared experiences, and the spaces that remind families they are not alone.

From realizing the need for support to building lifelong friendships within the Duchenne community, this episode highlights why judgment-free spaces matter just as much as medical and educational resources. Together, we discuss the moments that lead people to seek community, the comfort of being understood, and the lasting impact of finding people who truly “get it.”