Beyond the Diagnosis: Duchenne Perspectives

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.”

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.

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, FarmerGuests: Camlee Gianotti, Jett ambassador, Duchenne Sibling, Respiratory Therapist, Female with DystrophinopathyAllison Wheeler, MS - Certified Genetic Counselor at Neuroscience Institute and Children’s Hospital in CO

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.