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.

Rob shares his personal journey growing up with severe haemophilia A, a rare bleeding disorder. Diagnosed as a baby due to family history, Rob and his brothers inherited the condition from their mother, who is a carrier of a mutated gene leading to haemophilia. His story spans from childhood limitations, frequent injections, and a sense of isolation, to the profound impact a life-changing treatment can have. Rob also reflects on what it means to work in clinical research while being directly impacted by its advances. This episode is a compelling testament to resilience, progress in medicine, and the hope that future generations may never experience what he and his brothers did.

The song that Rob chose is Iris by The Goo Goo Dolls.