A Greek-Canadian father who lives in East York, Ontario, a suburb of Toronto, has now fulfilled his quest to bicycle 450 km to raise money to help save his son, who suffers from a rare disease.
Terry Pirovolakis had never even bicycled seriously in his life until he decided to embark on the challenging quest in order to raise funds for SPG50, hereditary spastic paraplegia Type 50, which only 60 people worldwide have.
His quest, which he titled “Cycle for Michael,” ended up raising $1.6 million out of the three million US dollars that Pivolakis says he needs for experimental gene therapy in the United States.
After his son was diagnosed with the ultra rare disease in 2019, Pirovolakis, known as a driven man who could usually find solutions to any problem, refused to give up and was determined to find a way to obtain treatment and find funding for it in whatever way he possibly could.
SPG50 is a neurodegenerative disease caused by the lack of a certain protein in the brain which causes progressive weakness and stiffness in the legs, leading to paralysis by the age of 10 years. Also causing significant developmental delays, it is believed that Michael Pirovolakis is the only Canadian to suffer with the disease.
The coronavirus pandemic brought all the family’s previous fundraising efforts to a screeching halt — even stopping Michael’s crucial physical therapy sessions.
His illness has unfortunately continued to progress, but research to find a cure has also continued apace, and Pirovolakis was determined to find a way, any way, to keep that research funded.
“I’m prepared to sell my house if the fundraising goals aren’t met,” said the devoted Greek-Canadian father.
After casting his mind this way and that, trying to come up with ways to continue fundraising despite the coronavirus restrictions, Pirovolakis hit upon a cycling marathon as a way to gain funding and attract attention to the fight for a cure for SPG50.
A mere six weeks ago, the indefatigable father decided to embark on the cycling quest since he had seen that “lots of influential people cycled” and he thought that might be a way to make his son’s plight known.
Soon, Pirovolakis took off on his #JourneyToCureMichael, which would take him from Toronto to Ottawa in hopes of meeting with Prime Minister Justin Trudeau to speak with him regarding possible government funding for the rare malady.
The Greek Canadian dad has hopes of even convincing the Prime Minister of matching the $1.6 million already raised toward Michael’s gene treatment. “We have to raise as much money as we can, but the most important thing is awareness. The more people who know, the better,” he told interviewers from Toronto.com.
Livestreaming his entire cycling quest on his GoPro camera, Pirovolakis took off last Saturday, October 3 and entered the Canadian capital on Tuesday. He already has plans to meet with PM Trudeau on Wednesday.
However, despite the success of Pirovolakis’ trip, clouds are still on the horizon because the toddler may not even be an ideal candidate for the very first clinical gene therapy trial. But it will have all been worth it in the end, the family believes, if they can help find a cure for this disease.
For more information about SPG50 or to make a donation, please visit curespg50.org.
Posted by Terry Pirovolakis on Tuesday, October 6, 2020