Reflections on Our Work with Team Joseph

In a world increasingly captivated by the promise of gene therapies and novel treatments for Duchenne muscular dystrophy (DMD), it’s easy to overlook the quieter realities—the daily, often invisible, labor of caregiving. That’s what made our recent partnership with Team Joseph so meaningful. It brought the focus back to where it truly belongs: the families living this journey every day.

Team Joseph’s latest initiative, the white paper Engulfed in Caregiving: A Portrait of Love, Endurance, and Unrelenting Need, is a powerful and unfiltered window into the lived experience of DMD caregivers. This 64-page report, spearheaded by Team Joseph’s founder and CEO, Marissa Penrod, is more than a collection of stories—it’s a disruption. It asks us to sit with discomfort, to feel the emotional and financial strain caregivers carry, and most importantly, to act.

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Driven by Mission, Fueled by Love

This was Marissa’s vision from the beginning. Inspired by her son Joseph—now 22 and living with Duchenne—she knew that the real story wasn’t just about treatments, but about the exhausting, loving, and often isolating work families do every single day. She raised the funds. She assembled the team. She made sure that the voices featured in this paper weren’t filtered or softened.

And what emerged is something rare in our industry: a raw, honest account of what life with Duchenne really looks like. From caregivers losing wages to make doctor’s appointments, to parents building their own medical equipment when insurance wouldn’t cover it—these stories stay with you. They should.

Our team had the privilege of supporting this work, and we’re especially proud of the role that my colleague, Alison Clabaugh, PhD, played as co-author. Alison brought deep curiosity, integrity, and empathy to every part of the process, and she worked closely with Marissa to help elevate the voices of caregivers without ever overshadowing them. It was Marissa’s torch—we were honored to help carry it.

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Looking Ahead: Stronger Together

This work doesn’t end with a publication. On April 23, 2025 Team Joseph hosted its first-ever Stronger Together gathering in Detroit, bringing together caregivers, nonprofit leaders, and pharmaceutical partners to dig into the tough questions raised by the white paper. The agenda reflects the same values as the report: inclusion, collaboration, and action. Alison attended on ThinkGen's behalf. This kind of convening—focused not on products, but on people—is what progress truly looks like.

Team Joseph reminds us that advocacy isn’t about heroics; it’s about persistence, listening, and love. Under Marissa’s leadership, they continue to challenge the status quo and build a more equitable future for every family affected by Duchenne.

We’re grateful to be part of this mission—and proud to keep learning from those who live it every day. To learn more go to their website: https://www.teamjoseph.org/

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