Terry Pirovoulakis
Parent and rare-disease advocate whose son Michael was diagnosed with SPG50; led fundraising and community efforts to develop and deliver a gene therapy for children with the condition.
Best podcasts with Terry Pirovoulakis
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Mar 1, 2026 • 21min
Rare diseases: from lived experience to lasting treatments | Sponsored
Terry Pirovoulakis, a parent who led fundraising to develop a gene therapy for his son Michael with SPG50. Sam Barrell, CEO of LifeArc, who funds and shapes rare-disease translation. They discuss long diagnostic journeys, gaps in data and regulation, parent-led innovation, and calls for joined-up policy and a national rare-disease champion.
