PPMD's Living Duchenne

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.

Ralph Waldo Emerson wrote: “It is a happy talent to know how to play.” Fun, joy, laughter, letting loose, and taking breaks from our routines to relax and play are all vital parts of physical, mental, and emotional health and wellbeing. On this episode Rachel sits down with Duchenne parent Colleen Labbadia and Physical Therapist Claudia Senesac to chat about the importance of making time for family fun and how to spot creative opportunities to add more play into your day.

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.

“You’re doing great!” “Keep going!” “You’ve got this!” We all see the cheery, inspirational posts on social media, but maybe you find yourself thinking: “I don’t have this at all.” Not only is that okay, but guess what? You’re not alone. On this episode, Rachel leads a refreshing, lighthearted conversation about managing expectations when things look or feel less than “perfect.” Guests and Duchenne parents, Jessica Divin and Alisha Taylor, join Rachel for some candid talk and humorous stories about navigating roadblocks and finding the lighter side of “parenting fails” that make us human.

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.

On this final episode of season 2 of PPMD's Living Duchenne, we are joined by DeAnne Friar, parent and PPMD Connect Michigan coordinator and Nicole Herring, PPMD's Vice President, Development & Community Engagement. Our host, Rachel Poysky, leads a discussion about the importance of making social connections to manage the diagnosis of Duchenne through support networks both locally and nationally.

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.

On the second episode of this season, we are joined by Duchenne moms Jessica Divin and Maria Jose Contreras to talk about making space on the Duchenne journey for connection with other parents and caregivers.

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.

Our host, Rachel Poysky, brings together guests Angela Wrigglesworth, educator and disability advocate, and Gretchen Egner, parent and PPMD’s Connect Wisconsin Coordinator, to discuss life skills that foster and encourage independence. The discussion also includes the role of outside caregivers, and how they can help your child develop communication skills, self-confidence, and a greater sense of control and autonomy over their life.

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.

On this episode, our host Rachel Poysky leads a conversation about meeting life milestones and how they make look a little different Living Duchenne. She is joined by special guests Betty Vertin, parent and PPMD Connect Coordinator, and Sarah McMahan, physical therapist, to discuss the importance of not only meeting children with Duchenne where they are, but meeting them where they are supposed to be.

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.