PPMD's Living Duchenne

We're rounding out Season 6 of Living Duchenne talking about the impact of Duchenne behavior on siblings. This conversation features fantastic guests, Colleen Labbadia, a Duchenne mom and counselor, and Hannah Divin, an older sibling of a brother with Duchenne. They join our host, Rachel Poysky, to share honest, heartfelt, and humorous perspectives on the world seen and experienced through a sibling's eyes. In this episode we chat about having open discussions about your sibling's needs, feelings, and experiences; making sure there's room for everyone's emotions; and finding the right ways to acknowledge that "everybody has a 'hard'" and it's important to keep an open, fluid dialogue about each family member's unique relationship to Duchenne. Join us!

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.

On this episode of Living Duchenne, host Rachel Poysky is joined by her husband, Dr. James Poysky, a Pediatric Neuropsychologist, for a conversation about insights into the connections between the Duchenne brain and challenging behaviors. Join us for a wide-ranging discussion between two Duchenne parents about managing expectations, bringing more transparency to the neurological nuances of Duchenne, and finding the right resources and practices that work for your family. From the cast: "Neurologically things are harder for them, and we have to take that into account." -James Poysky.

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!

For a lot of people fall is synonymous with football and for those in the muscular dystrophy community, that means Coach To Cure MD. Parent Project Muscular Dystrophy's nationwide initiative partners with the American Football Coaches Association (AFCA) to educate about Duchenne and Becker and raise funds for research. Every September high school and college coaches sport the “Coach To Cure MD” patches at games and talk about ways to support individuals with Duchenne at press conferences and other media events. These coaches, along with their teams, also forge special connections with families and individuals with Duchenne both on and off the field. In this episode, we hear from Jack, Brian, and Karen Wolf and Coach Keith Otterbein of Hillsdale College about their enduring friendship sparked through this incredible program.

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.

The good news: there is no wrong way to practice self-care. The even better news: self-care comes in all shapes and sizes; it’s infinitely customizable by you, for you! Our host Rachel Poysky sits down with Duchenne moms, Betty Vertin and Jill Castle for some candid conversation about the many paths to self-care empowerment.

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.

From siblings to grandparents to aunts and uncles and partners–a Duchenne or Becker diagnosis impacts across every family member, many of whom take on their own type of caregiving roles. Our host Rachel Poysky sits down with guests Susan Samuelson, Alyson Teal, and Hilary Becker who offer their unique insights on caring for a loved one with Duchenne and Becker, supporting primary caregivers, and sharing their own struggles and discoveries as people who “live Duchenne and Becker” from a different perspective.

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.