Kelly and Avery are two advocates living with Collagen VI-related congenital muscular dystrophy (CMD), an ultra-rare neuromuscular condition that causes progressive muscle weakness and impacts mobility and respiratory function.

They share their personal journeys with disability, discussing how their condition shaped their childhood, their transition to using power wheelchairs, and the societal assumptions they have had to challenge along the way. What emerges is not a story defined by limitations, but one of determination and community.

Beyond their personal experiences, both guests highlight the importance of advocacy – from mentoring younger people with CMD to participating in Rare Disease Week on Capitol Hill to raise awareness and influence policy. Their reflections underscore the urgency of improving diagnosis timelines, increasing research access, and ensuring people with disabilities are included in decisions that affect them.

Kelly and Avery host their own podcast, Wheel Talks, which provides a space for honest conversations about disability, independence, and representation. Their voices bring warmth, honesty, and hope about living fully while navigating a rare condition.

Ultimately, this episode is a powerful reminder that visibility, storytelling, and community can create meaningful change.

Dwayne shares his journey of living with Pompe disease, a rare genetic condition also known as acid-maltase disease or glycogen storage disease type II. He opens up about how the condition changed his mindset, and his new mantra: enjoy life to the fullest. It drives his story, as he recounts navigating his diagnosis, participating in a clinical trial, and advocating for awareness. He emphasizes how finding a supportive community and maintaining positivity shaped his relationship with Pompe. This discussion is filled with resilience, humour, and an unwavering commitment to life despite challenges.

The song that Dwayne chose is Live It Well by Switchfoot.