Shows / Beyond the Diagnosis: Duchenne Perspectives
Beyond the Diagnosis: Duchenne Perspectives
Beyond the Diagnosis: Duchenne Perspectives is a podcast series brought to the Duchenne community by Jett Foundation. The program's goal is to provide listeners with informative, supportive, and engaging content that goes beyond the medical diagnosis. It is designed to foster a sense of connection and community, tackling both the important, challenging topics and the lighthearted moments that make up life. The host of the series is Jessica Campbell, Jett Foundation's Social Worker dedicated to…
Episodes
- Beyond the Diagnosis: Duchenne Perspectives
Through the Siblings' Eyes
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…
- 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…
- Beyond the Diagnosis: Duchenne Perspectives
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…
- Beyond the Diagnosis: Duchenne Perspectives
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…
- Beyond the Diagnosis: Duchenne Perspectives
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…
- Beyond the Diagnosis: Duchenne Perspectives
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…
- Beyond the Diagnosis: Duchenne Perspectives
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…
- Beyond the Diagnosis: Duchenne Perspectives
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…
- Beyond the Diagnosis: Duchenne Perspectives
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…
- Beyond the Diagnosis: Duchenne Perspectives
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…
- Beyond the Diagnosis: Duchenne Perspectives
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…
- Beyond the Diagnosis: Duchenne Perspectives
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…
- Beyond the Diagnosis: Duchenne Perspectives
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…