Marissa shares how Team Joseph is supporting young adults with Duchenne as they shape their own futures, beyond the clinic and into adulthood.
In this episode of Catalyst Convos, hosts Amy Grover and Carrie Ostrea sit down with Marissa, Founder and CEO of Team Joseph. Marissa shares how her son’s diagnosis with Duchenne muscular dystrophy changed the trajectory of her life and how that journey has evolved as more young people with rare diseases are living into adulthood.
She opens up about the shift from focusing solely on clinical care to supporting the social and emotional needs of young adults with Duchenne. Marissa shares lessons from launching a first-of-its-kind virtual conference co-led by young men with Duchenne, as well as what she’s learning from their stories in a forthcoming white paper.
From dating to daily independence, this episode offers a powerful look at what happens when young adults get to define their own priorities and how advocacy must grow with them.
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