Speaker Profile

Founder, CureSPG50

Terry Pirovolakis is the founder of CureSPG50, a charity that is actively working on building a cure for a neurodegenerative disease called Spastic Paraplegia Type 50 (SPG50). Terry started the charity after his youngest son Michael was diagnosed with the disease in 2019. Since then he has put together a team of scientific professionals from around the world that are working on a Gene Therapy for SPG50, which they hope will positively change the lives of children affected by this terrible disease. In addition to Terry’s charity work he is also a Director of Contact Centre Strategy at CIBC in Toronto Canada.

Journey To Cure Michael
I will take the audience through our families journey to cure my son Michael of an ultra-rare disease called SPG50.

 Session Abstract – PMWC 2023 Silicon Valley

Track 1 - January 25 9.00 A.M.-3.00 P.M.

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

  • Welcome and Opening by Track Chairs: Yael Weiss, Mahzi & Peter Marks, FDA
  • Patient Driven Therapies: The Challenges and Successes (PANEL)
    Chair: Yael Weiss, Mahzi
    - Allyson Berent, Angelman Foundation
    - Terry Pirovolakis, CureSPG50
  • From Bench to Bedside - Biomarkers, Natural History Studies, Animal Models (PANEL)
    Chair: Peter Marks, FDA
    - Emil Kakkis, Ultragenyx
    - Alysson Muotri, UCSD
    - Nasha Fitter, Invitae
  • Commercialization - Moving from Rare to Common (PANEL)
    Chair: John Maraganore, Alnylam Pharmaceuticals
    - Shankar Ramaswamy, Kriya
    - Rahul Singhvi, Resilience
    - 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
  • Bioethics & Ethical Implications in Cell and Gene Therapies
    - Hank Greely, Stanford
    - Hana El-Samad, UCSF