Beyond the Diagnosis: Duchenne Perspectives

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...

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, the...

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...

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 Stelma...

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, Un...

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:   Camlee Gianotti, Jett ambassador, Duchenne Sibling, Respiratory Therapist, Female with Dystrophinopathy Allison Wheeler, MS - Certified Genetic Counselor at Neuro...

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 indivi...

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.