Beyond the Diagnosis: Duchenne Perspectives

When people think about Duchenne, they often think about the diagnosis, the medical journey, and the role of caregivers. But what is it like growing up with a sibling of someone living with Duchenne? In this episode, Luke Hains and Lydia Safford, who both grew up with brothers affected by Duchenne muscular dystrophy (DMD) share their experience. They reflect on how Duchenne has shaped their lives and decisions, the strength they've gained along the way, and the emotions they've navigated while supporting their brothers.

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, navigating support, and the real highs and lows of being a grandma in the Duchenne community.

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 PJ’s Protocol, and Rachel Shrader, Vice President of Clinical Care and Education at Parent Project Muscular Dystrophy.

Together, Brian and Rachel share how advocacy moves from personal experience to practical action—improving care, empowering families, and creating lasting impact across the Duchenne community. This is advocacy in action.

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 memories, and pure joy.

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.”

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.

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.

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.

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.

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:

• Annie Tulkin, MS, Founder and Director, Accessible College, LLC

• James Daniels, III, University of Georgia graduate, Bachelor's Degree in Public Relations, minor in Sports Management, Individual living with DMD
• Tyus Hill, University of North Texas graduate, Individual living with DMD, PAAC Member

Tune in to hear from women with personal experiences in dystrophinopathy, as well as a certified genetic counselor.

Co-Host:

Trina Stelly, Resource Specialist - Females in Duchenne at Jett Foundation, Patient Advocate, Farmer

Guests:

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Camlee Gianotti, Jett ambassador, Duchenne Sibling, Respiratory Therapist, Female with Dystrophinopathy

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Allison Wheeler, MS - Certified Genetic Counselor at Neuroscience Institute and Children’s Hospital in CO

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 Thummalapalli, Project Engineer, Vice President of PPMD Adult Advisory Committee, Individual Living with Duchenne
• Shelley Coskery, RN, Pediatric Nurse Practitioner at Children’s of Alabama
• Kim Rae , Fierce Advocate, mom to an individual living with Duchenne, Change Agent

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 Investigator, & Pediatric Neurologist, and Crystal Goss, mother of an individual living with Duchenne.