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.

Carter lives with multiple conditions, and this episode is focused on two of them: Ehlers-Danlos Syndrome (EDS) and Mast Cell Activation Syndrome (MCAS). Carter’s story is one of quiet endurance, misdiagnosis, rediscovery, and ultimately purpose.

Born with classical EDS caused by a collagen gene variant, Carter spent two decades sensing “something wasn’t quite right” before receiving a diagnosis. Years of chronic pain, joint instability, GI issues, and nerve problems were compounded by mast cell symptoms that mimicked psychiatric illness – hallucinations, mood swings, anxiety.

We discuss the profound shift after Carter’s diagnosis and receiving the right treatment for MCAS: clearer thinking, emotional stability, and physical relief. Deeper than the physical symptoms, Carter speaks with wisdom about reclaiming selfhood and finding peace. He also reflects on discovering a community who understands him, and finding a purpose in advocacy.

Carter’s reflections on resilience, stigma in healthcare, identity, and hope are thoughtful and deeply human.

The song that he chose is Standing Outside the Fire by Garth Brooks.

Sylvain speaks with Roberta about living alongside Alagille syndrome through her daughter Chloe’s journey. Roberta shares what it means to parent a child with a rare, multi-system condition, from the shock of an early diagnosis, to years dominated by relentless itching, sleep deprivation, and the emotional weight of watching her child suffer.

The conversation explores not only the medical realities of Alagille syndrome, but also the invisible burdens placed on caregivers, particularly when support systems fall short. Roberta reflects on the life-changing impact of clinical trials, the complexities of liver transplantation, and the long road toward independence for a young adult living with a chronic illness. Throughout, there is a quiet but powerful thread of hope, grounded in medical progress, community, and the small, human moments that sustain families through unimaginable challenges.

The song Roberta chose is Here Comes The Sun by the Beatles.