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.

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.