FOXG1 Parents Conference 2024 : Opening Keynote: Terry Pirovolakis, CEO Elpida Therapeutics
Автор: FOXG1 Research Foundation
Загружено: 2024-12-21
Просмотров: 381
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The opening keynote speaker of the FOXG1 Research Foundation's 2024 FOXG1 Parents and Caregivers conference was Terry Pirovalkis. A rare disease crusader and the father of Michael, who has spastic paraplegia type 50 (SPG50), a slow progressing neurodegenerative disorder. Mr. Pirovolakis’ fight to find a cure for his son could also transform the way that rare diseases are treated. As parents often do after a diagnosis, Terry began researching, reading scientific journals and meeting with gene therapy experts. A month later he signed a contract to start a gene therapy program. It took over a dozen research institutions and laboratories working throughout the globe to develop a treatment for Michael. Then, in 2023, Health Canada formally granted regulatory approval for the clinical treatment that would, hopefully, save the life of Michael and all those affected by SPG50.
Help cure FOXG1 syndrome: https://foxg1research.org/donate
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