Brandon shares a deeply personal and grounded account of living with granulomatosis with polyangiitis (GPA), a rare and potentially life-threatening autoimmune vasculitis. Brandon walks us through his diagnosis as a young Division I athlete, the long road to remission, and the physical and emotional toll of repeated relapses, impacting his lungs, kidneys, and identity as a runner.

Beyond the medical realities, this conversation gently explores grief, mental health, and the quiet isolation that often accompanies rare disease, especially in a sport environment when there is a pressure – external or self-inflicted – to “push through”. Brandon reflects on learning to listen to his body, manage stress, and redefine success away from constant striving.

The episode also highlights the power of community, advocacy, and shared stories through Brandon’s work with the Vasculitis Foundation, a reminder that inspiration doesn’t always come from extraordinary achievements; sometimes it comes from showing up, telling the truth, and helping others feel less alone.

The song that Brandon chose is Father’s Son by Steven Wilson Jr.

Sylvain speaks with Gay Grossman about life with ADCY5, a rare genetic movement disorder, and the journey she and her daughter Lilly have travelled together. Gay shares the long and often lonely road to diagnosis, the physical realities of a condition that affects the body but not the mind, and the quiet resilience Lilly has shown since childhood. The conversation moves through years of misdiagnosis, advocacy in schools, sleepless nights, and relentless problem-solving, before arriving at a moment of transformation: a treatment discovered through community, research, and lived experience that has profoundly changed Lilly’s quality of life. Above all, this episode is a story about perseverance, parental advocacy, and the belief that understanding the root cause can change everything, not just for one family, but for many.

The piece of music that Gay chose is Canon by Johann Pachelbel.

Marguerite shares the story of her son Louis and their life with Prader-Willi syndrome (PWS), a complex rare disease. Marguerite speaks with honesty, warmth and clarity about the medical, emotional and practical realities of raising a child with a rare genetic condition, from Louis’s fragile start in neonatal intensive care to adulthood in a specialist supported living environment. She explores complex themes such as food security, anxiety, autism, and the invisible labour of caregiving, while challenging societal assumptions about success, independence and what a “good life” looks like. Marguerite is a strong advocate for the PWS community, and the importance of social care for children and families dealing with a rare condition. This episode is ultimately a powerful reminder that with understanding, routine, community and the right support, people with Prader-Willi syndrome can live happy, meaningful lives – and that listening to those with lived experience is essential.

The song that Louis chose is Say Something by Justin Timberlake featuring Chris Stapleton.