FOXG1 Parents Conference 2024 : Opening Keynote: Terry Pirovolakis, CEO Elpida Therapeutics

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.
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