Congenital Muscular Dystrophy (CMD) is an ultra-rare diagnosis that often requires a long, complex journey toward answers.
In this episode, Brigitte Cutshall sits down with Kelly Berger and Avery Roberts, hosts of the Wheel Talk with Kelly & Avery Podcast, to explore their lives with the same rare subtype of CMD.
From meeting on a Zoom call to becoming close friends and collaborators , they share how they navigated the transition to mobility devices for independence and safety , the frustrations of a world not built for them , and their mission to amplify disabled voices through female empowerment.
3 Key Takeaways
(1) Diagnosis is a Spectrum: Avery was diagnosed at age seven after extensive testing , while Kelly lived with a misdiagnosis until her late 20s ; their experiences highlight that CMD is a spectrum disorder where every individual's journey is unique
(2) The Difference Between Compliance and Access: The ADA provides only a "bare minimum" for public spaces , but many private or older venues, such as New York theaters, remain inaccessible , forcing those with disabilities to perform exhausting "pre-planning" just to run basic errands.
(3) The Power of Allyship and Unlearning: Being a supportive ally starts with a willingness to "unlearn" misconceptions and assumptions about the disability community , understanding that there is power in collective action to enact meaningful, lasting change.
Action items:
- Support and listen to people with disabilities
- Advocate for accessible environments
- Stay informed about genetic testing and health
Check out Kelly and Avery’s stories on the Wheel Talk with Kelly & Avery Podcast—available on Apple, Spotify, and YouTube—and follow their mission to uplift and empower rare voices.