EP 38 Tanya Chute Nagy and Nicole Pallone

What happens when a routine newborn screening call changes your life forever? In this episode of Rare Awareness Radio, host Richard Juknavorian speaks with two powerful advocates in the PKU community — Nicole Pallone and Tanya Chute Nagy from CanPKU+. Both Nicole and Tanya are parents of children living with Phenylketonuria (PKU) — a rare genetic metabolic disorder that requires lifelong dietary management and constant vigilance. What began as a deeply personal journey for their families has grown into a mission to support thousands of others navigating the same path. Nicole serves as Chair of the Board, and Tanya serves as CEO and President of CanPKU+, a national organization dedicated to education, advocacy, research awareness, and community support for individuals and families affected by PKU and allied disorders. In this powerful conversation, we explore: • The moment parents receive the PKU diagnosis • What daily life managing PKU really looks like • The emotional journey families experience after diagnosis • Why community support is critical in rare diseases • The advocacy work happening across Canada • How parents transform into leaders and change-makers Rare diseases can often feel isolating — but stories like these remind us that community, advocacy, and shared knowledge can change everything. CALL TO ACTION If you want to learn more about PKU, support families living with the condition, or get involved in advocacy efforts, please visit: https://canpku.org You’ll find resources, programs, and ways to support the incredible work being done for the PKU community. About Rare Awareness Radio Rare Awareness Radio brings together patients, families, researchers, clinicians, and advocates working to advance awareness, understanding, and progress across the rare disease community. Each episode shares real stories and real voices from those living and leading in the rare disease space. Please visit - https://rareawarenessradio.org/ If you found this conversation meaningful: • Like the video • Subscribe to the channel • Share this episode with someone who cares about rare disease awareness Every share helps amplify these important voices. #RareDisease #PKU #Phenylketonuria #RareDiseaseAwareness #MetabolicDisorders #PKUCommunity #PatientAdvocacy #RareAwarenessRadio