PPMD's Living Duchenne

Welcome back to PPMD's podcast, Living Duchenne! This season we're discussing Raising an Independent Child. The path to purpose and independence begins at an early age for every individual. For those on the Duchenne journey this means tapping into creativity, community, and resources. This episode finds guests Christopher Bennett and Amy Ridolphi talking with our host, Rachel Poysky, about building a strong foundation for empowerment during those grade school and pre-adolescent years. Both guests share practical methods such as introducing chore responsibilities and socializing habits along with mental and emotional frameworks that benefit the entire family. Join us for a fantastic conversation!

Join us for another great conversation on Living Duchenne in our season focusing on the intersection of behaviors and the Duchenne experience. In this episode, our host Rachel Poysky chats with Dr. Felix Wu, PhD in Industrial Organization Psychology who also lives with Duchenne. Dr. Wu gives candid insight into the behaviors he's grappled with as his Duchenne has progressed. He talks about "understanding the why" behind various behaviors--recognizing that factors such as frustration, anxiety, grief, and insecurity (on both the part of parents and family members) play roles in the Duchenne dynamic as much as biology and neurology.

Join us for a new season of Living Duchenne! In these episodes our host Rachel Poysky sits down with guests to talk about understanding and normalizing behaviors related to the Duchenne experience. In our first episode, “It Just Might Look a Little Different,” guests Jessica Rownd and Dawn Rezkalla discuss the challenges of behaviors impacting daily life with Duchenne. They offer practical strategies that have empowered their sons and improved their families’ quality of life. From educating the educators to finding support and giving themselves room to breathe and innovate as parents doing their best, Jessica, Dawn, and Rachel share valuable insights, humor, and tips every family can use!

Dystrophinopathy is not exclusive to males. Though rare, women can also be affected by the disease, which raises different kinds of questions, challenges, and discoveries. On this episode, Deb Jansen and Mariana Livingston join host Rachel Poysky to offer their thoughts and insights about the complexities of the way the disease manifests in women and what we can do to raise awareness and provide more support for women living Duchenne.

Whether you’re a woman who is a carrier for Duchenne or are close to a family member or loved one with a carrier status, it’s important to put physical and emotional wellness in focus. On this episode, we’re joined by Trina Stelly and Mindy Cameron who talk candidly with host, Rachel Poysky about their experiences navigating a carrier status and what they find both rewarding and challenging about taking control of their health.

We're getting excited for PPMD's 2022 Annual Conference with this special BONUS EPISODE of Living Duchenne about making the most out of YOUR Conference Experience. Join our host Rachel Poysky along with special guests, Jessica Rownd, John Killian, and Linda Cripe as they share their insights and stories on what makes conference a positive, empowered, inspiring event for the entire family.

Let’s face it, sometimes taking a yoga class or finding time to try meditation is not simply realistic in a family with Duchenne. Why follow the wellness rules when you can simply make your own? Duchenne parents Tiffany Herring and Kindann Fawcett join Rachel to talk about accessible, reasonable ways to incorporate nutrition and physical activity into your busy routines. Listeners will hear creative solutions by real people that they can easily customize to fit their unique family dynamic.

For some, counseling and therapy may seem a bit mysterious or even a little scary or overwhelming. The good news–it doesn’t have to be! On this episode, Rachel chats with guests Lauren Fritz (Duchenne parent and licensed counselor) and Maria McDonnell (Duchenne parent) as they share their individual experiences with counseling and how it has positively impacted their mental health and wellbeing.

Patrick Moeschen and Adith Thummalapalli join our host Rachel Poysky to talk about the importance of forging social bonds in the Duchenne and Becker teen and adult community.

Welcome to Season 2 of Living Duchenne! This season we are exploring "Building Community" and finding the silver lining of Duchenne. On our first episode, we are are excited to welcome PPMD's co-founders Pat Furlong and Donna Saccomanno. Join us to hear Pat and Donna talk about what it took to create community and connection in a time before the Internet made it easier for us to find one another and when muscular dystrophy research was still in its infancy.

On the 3rd episode of Living Duchenne, our host, Rachel Poysky, is joined by special guests Adam Wechsler, PPMD Adult Advisory Committee (PAAC) member, and Christina Trout, advanced practice nurse, to discuss planning for transition into adulthood. This conversation emphasizes the importance of building community, accessing important resources, and how it’s never too early to start preparing for your child’s future.

Welcome to PPMD’s podcast, Living Duchenne! In this launch episode, our host, Rachel Poysky, sits down with PPMD’s president and CEO, Pat Furlong and PPMD board and PAAC member (PPMD Adult Advisory Committee) Colin Rensch, to share perspectives on where we started and where we are going as a community, as well as what this means for living Duchenne.