Episode 20

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Published on:

7th Nov 2020

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 

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About the Podcast

Raising Rare
Imagine the excitement of becoming a new parent and then within hours finding out your child has a serious developmental disorder.

That is exactly where Sanath Kumar Ramesh found himself in the summer of 2018. One year later, on his son’s first birthday, they found out that their son, Raghav, had an extremely rare mutation of the GPX4 gene. At the time, doctors told them that Raghav may be the only one on the planet with this genetic variant who had lived beyond one month of life. The prognosis is completely unknown.

They were alone.

They were scared.

And then they went into action.

And now they want to share their story.

Every couple of weeks Raising Rare will give you an update on baby Raghav as he grows up. We will also share how Sanath and his wife Ramya are driving toward a treatment for their son. We will explore the science that Sanath is initiating, their efforts to fund that research, and the people they meet along the way. We will also hear how the family adjusts to challenges and changes that they are faced with. Most importantly, we will share the wisdom they gain along the way so that other Rare Parents can learn from their steps and missteps.

We don’t know where this story will go. We do know we want you to join us for the journey.
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About your hosts

Sanath Kumar Ramesh

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Kevin Freiert

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