SPG50

• Gene therapy halts progression of rare neurodegenerative disease in Toronto boy

  The findings from a single-patient gene therapy trial at The Hospital for Sick Children show promise in halting the progression of a young Toronto boy's rare disease.

  Health

  Jun 29
  
• ‘Uncharted territory’: Toronto family of child with rare disease raises $3M for therapy

  'This could change his life,' said Terry Pirovolakis of a gene therapy clinical trial to treat son Michael's ultra-rare condition, SPG50.

  Health

  Aug 15, 2022
  
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• Coronavirus: Young Canadians with rare diseases feeling impact of pandemic

  "Why can't we take the same kind of initiative that we've had to COVID to helping our children with rare diseases?" asked CORD CEO Durhane Wong-Rieger.

  Health

  Mar 16, 2021
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• Coronavirus: Toronto-area family of child with rare disease turns to Ottawa for help with funding

  "Every night I can't sleep well ... thinking how are we going to raise another $1.6 million?"

  Canada

  Oct 1, 2020
• Toronto family of child with ultra-rare disease fighting for a cure

  "He looks like a normal kid ... loves life. He's an angel. He's my little buddy," said Terry Pirovolakis, the boy's father.

  Health

  Jun 27, 2019