PPMD’s Living Duchenne

A podcast bringing together community voices to talk about navigating the Duchenne experience.

PPMD created this podcast as an opportunity to take a deeper dive into topics that impact Duchenne patients and their families on a daily basis. In each episode, we will be joined by an expert and community member to discuss their perspectives, guidance, and wisdom about living Duchenne.

Now available on Apple Podcasts, Spotify, or wherever you get your podcasts!

Season One: Preparing Today for Independence Tomorrow

Our first season, Preparing Today for Independence Tomorrow, consists of four weekly episodes released during the month of September, hosted by PPMD’s Connect Coordinator Rachel Poysky, a Duchenne mom and PPMD South Texas Connect Coordinator. Each episode covers topics related to facilitating independence starting from a young age.

Season Two: Building Community, The Silver Lining of Duchenne

Our second season, Finding Community, the Silver Lining of Duchenne, consists of four weekly episodes released throughout the holiday season, hosted by Rachel Poysky, a Duchenne mom and PPMD South Texas Connect Coordinator. Each episode covers topics related to the importance of finding “your us” and building strength as a community.

Season 3: Putting the “We” in Wellness

In our third season, Putting the “We” in Wellness, our host, Rachel Poysky sits down with a new round of guests to talk about taking care of ourselves. How do we incorporate wellness practices–physical, mental, and emotional–into our intense and busy Duchenne family lives?

Season 4: Centering Women in the Duchenne Journey

Season 4 of our Living Duchenne podcast continues the dialogue started with the 2022 World Duchenne Awareness Day’s theme, “Women & Duchenne.” This season we bring together a number of perspectives from women living various aspects of the dystrophinopathy experience.

Season 5: What Touches Your Heart About Duchenne?

Season 5 brings together community voices to talk about all aspects of the Duchenne experience. This season gathers stories around the theme, “What Touches Your Heart About Duchenne?” Despite the many challenges that come with this disease there are also numerous affirming impacts that come with being in this community. From forging lifelong friendships with other families and discovering a deeper sense of purpose to your life, to changing the way you approach your work as a researcher and provider, host Rachel Poysky sits down with guests from different walks of life to hear their stories about how they have been positively transformed by their relationship with Duchenne.

Season 6: Normalizing Behaviors

In Season 6 of Living Duchenne, host Rachel Poysky sits down with community members and experts to explore behaviors related to the Duchenne experience. Through candid conversations, guests share personal experiences, practical strategies, and insights into the neurological and emotional factors that can influence behavior, as well as the impact on siblings and families. Together, these conversations offer understanding, guidance, and reassurance for navigating behaviors and supporting every member of the family.

Season 7: Raising an Independent Child

In Season 7 of Living Duchenne, host Rachel Poysky sits down with community members and experts to explore what it means to raise an independent child with Duchenne. Through conversations spanning childhood, the middle years, and young adulthood, guests share practical strategies and personal experiences around building empowerment, self-advocacy, purpose, and independence. Together, these conversations offer families guidance and encouragement for supporting meaningful, independent lives at every stage of the Duchenne journey.

Season 8: Caregiver Burnout

In Season 8 of Living Duchenne, host Rachel Poysky sits down with community members and experts to explore caregiver burnout. Through candid conversations, guests share their experiences, perspectives, and practical guidance for recognizing burnout, setting boundaries, and making space for their own needs. Whether you are early in your journey or have been caregiving for years, these conversations offer connection, understanding, and a reminder that you are not alone.

Please email podcast@parentprojectmd.org with any questions about current episodes or suggestions for future topics to be considered.