#87 Redefining Disability with Congenital Muscular Dystrophy
Episode Description
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 mobility
- Kelly and Avery’s personal experiences living with CMD
- How wheelchair users can be supported respectfully
- Common misconceptions about disability and mobility aids
- Why disability identity can be empowering
- Advocacy around rare disease, Medicaid, disability rights, and 504 protections
- The importance of Collagen 6 Awareness Day
- Building community within the rare disease and disability spaces
- Why Kelly and Avery launched their podcast Wheel Talk
- Advice for children growing up with physical disabilities
- Hopes for the future of CMD research, disability inclusion, and community advocacy
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 ResourcesThe Capitol Crawl in March 1990
Wheel Talk Podcast’s Instagram
Wheel Talk Podcast via Spotify
MedlinePlus’ Collagen VI-related dystrophy
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“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.
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