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Terry Pirovolakis (born 1979) is a Canadian technologist and biotech leader focused on developing treatments for ultra-rare disorders. He has spent much of his career in IT, building call centers and CRM systems for Fortune 500 companies worldwide. In 2019, his youngest son, Michael, was diagnosed with SPG50, an ultra-rare disease. In response, Terry and his family founded CureSPG50 to raise funds for research and treatment for this condition, which affects fewer than 200 children globally.[1] Within three years, they raised $4.5 million and developed a treatment for Michael and others with SPG50. Following this achievement, Terry founded Elpida Therapeutics SPC, a biotech company run as a non-profit, dedicated to providing gene therapies to children in need worldwide.
References
edit- https://www.cbc.ca/news/health/a-race-against-time-toronto-family-tries-to-raise-3m-to-treat-son-s-rare-genetic-disorder-1.5218632
- https://www.cbc.ca/news/canada/toronto/toronto-family-genetic-disorder-clinical-trial-1.6550306
- https://www.cbc.ca/news/health/medical-fundraising-boot-camp-rare-disease-1.5292192
- 'There's no stopping': Family of boy treated for rare genetic disease looks to cure others
- ‘Uncharted territory’: Toronto family of child with rare disease raises $3M for therapy | Globalnews.ca
- Parents Are Racing to Find a Cure for This 19 Month Old: 'I'm Not Going to Let My Son Wither Away'
- Viralgen Vector Core and Elpida Therapeutics partner to manufacture gene therapy medicines for anticipated Spastic Paraplegia 50 (SPG50) and Charcot-Marie-Tooth disease type 4J (CMT4J) clinical trials
- Canadian family raised $3.5M to develop individualized gene therapy for son's rare condition | National Post
- Science Update: Gene therapy for rare neurodegenerative disease shows early promise | NICHD - Eunice Kennedy Shriver National Institute of Child Health and Human Development
- Intrathecal AAV9/AP4M1 gene therapy for hereditary spastic paraplegia 50 shows safety and efficacy in preclinical studies
- Intrathecal AAV9/AP4M1 gene therapy for hereditary spastic paraplegia 50 shows safety and efficacy in preclinical studies
- Paving a way to treat spastic paraplegia 50
- ^ Roumeliotis, Ioanna; Mancini, Melissa. "'A race against time': Toronto family tries to raise $3M to treat son's rare genetic disorder".