Terry Pirovolakis: A Father’s Incredible Mission to Treat His Son’s Rare Disease, SPG50

When Terry and Georgia Pirovolakis received the devastating news that their 15-month-old son, Michael, had been diagnosed with Spastic Paraplegia Type 50 (SPG50), a rare neurodegenerative disorder affecting approximately 80 children worldwide, they were determined to find a cure. Refusing to accept the lack of available treatments, Terry embarked on an extraordinary journey to develop a gene therapy for SPG50. This led to the creation of CureSPG50, an organization dedicated to funding the development of this therapy. Building on this momentum, Terry founded Elpida Therapeutics, a socially responsible corporation aiming to rapidly develop gene therapies for SPG50 and other rare diseases. In this episode of Forks, Terry shares his inspiring story of resilience, innovation, and the challenges of navigating medical research as a non-scientist. He discusses the development of MELPIDA, the first gene therapy for SPG50, which Michael received in March 2022, and how Elpida Therapeutics plans to expand its reach to help other children with rare diseases. 💡 Did you know?•Over 10,000 rare diseases affect more than 400 million people worldwide.•1 in 10 people globally has a rare disease.•Half of all rare disease patients are children, and 30% won’t reach their 5th birthday.•More than 90% of rare diseases lack an FDA-approved treatment.•It takes an average of 6-8 years for a patient to receive an accurate rare disease diagnosis.•80% of rare diseases are genetic, making early diagnosis and treatment crucial.•Rare disease research is severely underfunded, with limited incentives for pharmaceutical companies.Terry’s mission extends beyond his son—he’s working to ensure children worldwide receive life-saving treatments. You can support this critical work by donating at curespg50.org/donate.Follow ForksWebsite (apply to be on the show!) - forkspod.com/contactInstagram - @forkspodFacebook - The Forks PodcastLinkedIn - linkedin.com/company/forkspodCopyrightAll content, including audio, transcripts, and other materials, is owned by the podcast creators (Alexis Hood and Amie Plourde) and cannot be reproduced or redistributed without permission.DisclaimerThe Forks podcast, available at forkspod.com, is for informational and entertainment purposes only. The views and opinions expressed by guests are their own and do not necessarily reflect those of the hosts. The content provided is not a substitute for professional advice, and the hosts are not liable for any actions taken based on podcast discussions.By participating as a guest, individuals consent to the recording and sharing of their stories. Listener privacy is respected in line with our privacy policy, and any data collected will be handled in accordance with applicable laws such as GDPR and CCPA.For full terms and policies, please visit forkspod.com. Hosted on Acast. See acast.com/privacy for more information.