A Father’s Race Against Time

Spastic Paraplegia 50 (SPG50) is a neurodegenerative and neurodevelopmental disorder that is known to affect only 80 people around the world, including just one person in Canada.  

Unfortunately for Terry Pirovolakis, it happens to be his son, Michael. As a result, he’s teamed up with gene therapy experts, CROs, and nonprofits to research, manufacture, and deliver a therapy to help his son and others suffering from this ultra-rare disease, but the clock is ticking.   

Join us as Terry discusses his grassroots efforts to raise money and found the Cure SPG50 Foundation, how SPG50 affects the body, the future of research and development for this disease, and what you can do to help Terry’s efforts. 

Show Notes:

• Sounds of Science E33: A Father's Fight 
• Eureka Blog: The Hunt for a Solution to SPG50 
• Cure SPG50 - We Did It 
• Rare Disease 
• Cell and Gene Therapy Products & Services 
• Neuroscience Studies 
• Family of baby boy with ultra-rare disease aims to raise $3M for gene therapy 
• Toronto boy with rare genetic disorder begins treatment after family raises US$3 million 
• Single-patient gene therapy clinical trial at SickKids carves a path for Precision Child Health 
• Elpida Therapeutics