Speaker Profile

PMWC LUMINARY AWARD
A parent who took a leadership role in the development of novel therapy for patients with SPG50 and advocacy to transform rare disease treatment in children

Founder, CureSPG50

Biography
Terry Pirovolakis is 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. Shortly after Michaels diagnosis, Terry began researching, reading scientific jounals and meeting with gene therapy expert. 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, last December Health Canada formally granted regulatory approval for the clinical treatment that would, hopefully, save the life of Michael and all those affected by SPG50. Mr. Pirovolakis was so moved by this ordeal that he wants to change the way rare diseases are approached at the national level. He's hosting free monthly gene therapy courses (Genes 101, Genes 103, and Genes 103) to help other families advance their own discovery programs.


 Session Abstract – PMWC 2023 Silicon Valley

Track 1 - January 25 9.00 A.M.-4.15 P.M.


Track Co-Chairs:
Yael Weiss, Mahzi
Peter Marks, FDA

  • Welcome and Opening by Track Chairs: Yael Weiss, Mahzi
  • PMWC 2023 Luminary Award Ceremony
    - Allyson Berent, Angelman Foundation
    - Terry Pirovolakis, CureSPG50
  • From Bench to Bedside - Biomarkers, Natural History Studies, Animal Models (PANEL)
    Chair: Peter Marks, FDA (Allyson Berent, FAST)
    - Emil Kakkis, Ultragenyx
    - Alysson Muotri, UCSD
    - Nasha Fitter, Invitae
  • Commercialization - Moving from Rare to Common (PANEL)
    Chair: Matthew Patterson, Vor Bio
    - Shankar Ramaswamy, Kriya
    - Rahul Singhvi, Resilience
    - Sarah Glass, Ultragenyx
    - Andrew Lo, MIT
    - Mark Harrison, University of British Colombia
  • Future Modalities (PANEL)
    Chair: Shannon Muir, CIAPM
    - Nadav Ahituv, UCSF
    - Amber Salzman, Epic Bio
    - Ben Oakes, Scribe Therapeutics
  • PMWC NCI Showcase
    - Michael M. Binkley, OpenCell
  • Cellular Rejuvenation Programming
    - Hana El-Samad, UCSF
  • Bioethics & Ethical Implications in Cell and Gene Therapies
    - Hank Greely, Stanford
  • Patient Driven Therapies: The Challenges and Successes (PANEL)
    Chair: Yael Weiss, Mahzi
    - Terry Pirovolakis, CureSPG50
    - Allyson Berent, Angelman Foundation
  • PMWC Showcase - Peter Marinkovich, Stanford

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