On One Condition

Andrew is the father of Diego, who was diagnosed with peroxisome biogenesis disorder (PBD), a rare and potentially devastating genetic condition affecting an organelle found in every cell of the body.

Andrew shares the emotional reality of receiving a diagnosis when doctors could not tell his family what the future would look like, and that there were no treatments available. But alongside the uncertainty came a determination to understand the disease and do something about it. What began with Andrew learning how to read scientific papers and reaching out to researchers eventually led him to leave his career and work full-time to build an ecosystem around peroxisome research.

The conversation goes beyond Diego's story. Andrew explains why the peroxisome has historically received far less attention and funding than other areas of biology, and why changing that requires more than scientific discovery.

Ultimately, this is a story about turning an incredibly difficult diagnosis into purpose, while never losing sight of the child and family at the heart of it.

Andrew chose the song Un Poco Loco by Anthony Gonzalez and Gael García Bernal.

Katie's journey with hypoparathyroidism began unexpectedly, following surgery for thyroid cancer in her twenties. What followed was a profound period of uncertainty, brain fog, fatigue and loss of independence, during which Katie often had to become her own advocate while struggling with the very symptoms that made advocacy difficult. Her story is also one of resilience, community and partnership. She describes how family and friends helped her through some of her darkest moments, how a clinical trial became a turning point in her treatment journey, and how working alongside her physician, the patient community, pharmaceutical companies and the FDA ultimately helped bring a treatment to patients. Most importantly, Katie reflects on what it means to have your voice heard when living with a rare or chronic condition. Her message to everyone working with patients is beautifully simple: patients need to feel heard, understood and believed. The song that Katie chose is The Cure by Little Mix.

Monica shares her extraordinary journey through years of unexplained pain, repeated misdiagnoses, and a 20-month diagnostic odyssey that ultimately led to confirming that her symptoms were real, and that she was suffering from Craniocervical Instability (CCI), Chiari malformation, tethered cord syndrome and Ehlers-Danlos syndrome (EDS). What begins as a story of a healthcare system that repeatedly failed to recognise a rare condition becomes a powerful conversation about resilience, advocacy and finding purpose through adversity.

Monica speaks openly about losing her health, career and identity, while also explaining how she reclaimed control by becoming an advocate for rare disease patients. She discusses the realities of navigating insurance denials, undergoing an eight-hour neurosurgical procedure, living with permanent disability, and why she is passionate about improving awareness of the relationship between connective tissue disorders and menopause.

Throughout the conversation, Monica demonstrates remarkable optimism, showing how writing, visualization techniques and advocacy have transformed one of the darkest periods of her life into a mission to help others feel seen, believed and less alone.

The song that Monica chose is Man in the Mirror by Michael Jackson.