Beyond the Diagnosis: Duchenne Perspectives

Grandmothers, Wisdom & Duchenne

How does a Duchenne diagnosis impact the whole family? Grandmothers Rene Wray, Susan Samuelson, and Lisa Huntley join the show to discuss their unique perspectives, navig

Advocacy in Action: Highlighting PJ's Protocol

In today’s episode, we’re talking about Advocacy in Action, where lived experience meets meaningful change. In this episode, we’re joined by Brian Nicholoff, creator of P

Campfire Chats

We’re talking all things Camp Promise with Directors Meghan & Niki, plus campers Kate, Jake, and Phera sharing what camp really means to them. Expect big laughs, favorite

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 Hai

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

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 journe

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

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 sibl

Voices from Campus: Duchenne in Higher Education

Join us for an insightful conversation about preparing for college: from navigating academic challenges to social life and daily living, we cover it all. Guest Speakers:

Not Just a Carrier: Female Voices in Dystrophinopathy

Tune in to hear from women with personal experiences in dystrophinopathy, as well as a certified genetic counselor. Co-Host:  Trina Stelly, Resource Specialist - Female

The Next Chapter: Transition to Adulthood

Join us for a conversation about the transition from childhood to adulthood and how it impacts care, decision-making, family dynamics, and more. Guest speakers: Adith

Unpacking Clinical Trials and Therapies: Benefits, Risks, and Realities

Tune as we discuss the ins and outs of clinical trials in Duchenne with guest speakers Dr. Edward Smith, Medical Director at Rare Disease Research-NC, Principal Investiga