The Sibling Experience

Finding Your Community

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.”

Redefining What’s Possible

What happens when we stop defining people by their diagnosis and start listening to who they really are? In this episode of Beyond the Diagnosis, we are Redefining What’s Possible. Our guests Ravi Lipman, Ash Brittenham, and Nathan Rothe join us to share their experiences as adults living with Duchenne—men with careers, passions, and interests that extend far beyond medical labels. Together, they challenge assumptions, celebrate individuality, and remind us that possibility looks different for everyone.

From Price Tags to Parking Spots: The Reality of Accessible Vans

Accessible vehicles are more than a line item on a budget, they’re a lifeline to independence, connection, and community. But for families navigating Duchenne, the journey from recognizing the need to finally pulling into an accessible parking spot can feel overwhelming, emotional, and financially daunting. In this episode of Beyond the Diagnosis: Duchenne Perspectives Podcast, From Price Tags to Parking Spots, we’re unpacking what that journey really looks like, from the true cost of accessible vehicles to the life-changing impact they can have once the keys are in hand. We’re joined by two powerful voices. Lenny Ovadia, General Manager at United Access, brings an industry perspective on accessible vehicle options, planning ahead, and what families should know before making these major decisions. And Wendy Busch, mom to an adult son living with Duchenne and a recipient of the Jett Foundation Accessible Vehicle Fund, shares her family’s lived experience navigating this process and how reliable, accessible transportation transformed everyday life. Together, we’ll explore the realities behind the price tags, the planning it takes to get there, and why access to transportation is about so much more than mobility, it’s about dignity, independence, and showing up fully in the world.

Love Without Limits

On this episode of Beyond the Diagnosis, we’re talking all things love, partnership, and the real-life magic that happens when two people choose each other. We’re joined by two wonderful couples who bring heart, humor, and honesty to the conversation. Pat Moeschen and his wife, Vanessa—a duo who prove that teamwork (and a good laugh) can get you through anything. And joining them are Matt Stelmach and his fiancée, Mary Griffin, who show us what commitment, communication, and planning for the future really look like. Together, they're diving into dating, marriage, caregiving, boundaries, and building a love story that’s truly their own.

The Sibling Experience

Tune in for a conversation with sibling and advocate Destiny Holland, and Child Life Specialist, Andrea Lerude, MS, CCLS, QMHP-CS as we tackle topics like supporting siblings, resources, navigating emotional challenges, and more.