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Raising Rare - Raising Rare EPISODE 20, 7th November 2020
Terry Pirovolakis: A Fellow Dad Raising Funds for His Son (Part 2)

Terry Pirovolakis: A Fellow Dad Raising Funds for His Son (Part 2)

“Our goal is not to make money. Our goal is to help these kids!”   

We continue our conversation with Terry Pirovolakis whose son Michael has spastic paraplegia (SPG50).  Last time we discussed the realities of raising a child with a rare disease that Terry and Sanath share. This time, we talk business.   

Both these fathers are in desperate need of millions of dollars to fund the research to find a cure or treatment for their sons. Terry has had an amazing fundraising journey.  His initial optimism that a few companies would make big contribution was short-lived.  What he found was that his own neighborhood near Toronto would be the start of a local movement to help him out. This very humbling start has helped him see the good in people. 

Recently, Terry biked 400 km from Toronto to Ottawa, the capital of Canada.  While in Ottawa, he had the opportunity to meet with and influence the Prime Minister of Canada, Justin Trudeau.   This fundraising effort and his own career in IT have shaped some tremendous ideas for a new model for finding treatments.   

Terry was a joy to speak with. His energy, optimism, and clear-thinking are very refreshing.  We hope you will agree.  

You can support Terry’s effort at https://cureSPG50.org