『#87 Redefining Disability with Congenital Muscular Dystrophy』のカバーアート

#87 Redefining Disability with Congenital Muscular Dystrophy

#87 Redefining Disability with Congenital Muscular Dystrophy

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In this episode of It Happened To Me, hosts Cathy Gildenhorn and Beth Glassman are joined by Kelly Berger and Avery Roberts, two women living with congenital muscular dystrophy and the co-hosts of the podcast Wheel Talk. Congenital muscular dystrophy, or CMD, is a rare group of genetic conditions that affect muscle strength and mobility from birth or early childhood. For Kelly and Avery, living with CMD has shaped their experiences with independence, accessibility, mobility, advocacy, and identity. But as they make clear in this conversation, disability is not something to be hidden, minimized, or “fixed.” It is part of who they are. Kelly and Avery share how they met, what life with CMD looks like for each of them, and how their relationship with disability identity has evolved over time. They also discuss what respectful support from others can look like, why unsolicited assumptions can be harmful, and how people can better understand wheelchair users as whole people living full, ordinary, meaningful lives. The conversation explores Kelly and Avery’s advocacy work, including their meetings with state and federal legislators around rare disease, disability rights, Medicaid, and 504 protections. They discuss the importance of bringing lived experience into policy conversations, as well as their role in helping spearhead the U.S. portion of the inaugural World Collagen 6 Awareness Day (June 6th). Collagen 6-related muscular dystrophy is the ultra-rare form of CMD that both Kelly and Avery live with, making awareness and community-building especially meaningful. Kelly and Avery also reflect on launching Wheel Talk podcast in 2025, why they felt a podcast was needed, and how they balance visibility with vulnerability when sharing their lives publicly. Through their platform, they are breaking down stereotypes, challenging misconceptions, and creating space for more honest conversations about disability, rare disease, and identity. Discussion Topics: What congenital muscular dystrophy is and how it affects muscle strength and mobilityKelly and Avery’s personal experiences living with CMDHow wheelchair users can be supported respectfullyCommon misconceptions about disability and mobility aidsWhy disability identity can be empoweringAdvocacy around rare disease, Medicaid, disability rights, and 504 protectionsThe importance of Collagen 6 Awareness DayBuilding community within the rare disease and disability spacesWhy Kelly and Avery launched their podcast Wheel TalkAdvice for children growing up with physical disabilitiesHopes for the future of CMD research, disability inclusion, and community advocacy About Kelly Berger and Avery Roberts Kelly Berger and Avery Roberts are two women living with congenital muscular dystrophy and the co-hosts of the podcast Wheel Talk. Through their advocacy, public speaking, media work, mentorship, and legislative engagement, they use their lived experiences to challenge stereotypes, advance disability rights, and build community for people living with rare disease and physical disabilities. Relevant Resources The Capitol Crawl in March 1990 Wheel Talk Podcast Website Wheel Talk Podcast’s Instagram Wheel Talk Podcast via Apple Wheel Talk Podcast via Spotify Avery’s Instagram Kelly’s Instagram World Col6 Myopathy Day MedlinePlus’ Collagen VI-related dystrophy Connect With Us Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”. “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today’s Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer. See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com.
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