Episode 19

Published on:

24th Oct 2020

Terry Pirovolakis: A Fellow Dad Fighting for His Son (Part 1)

“Unfortunately, the technology we have right now is not good enough for what we really want.  People will talk about what we are doing, ‘Is it 100%?’ No, it’s NOT. It’s about 5% of what we want. But if we do nothing, nothing is worse than what we're trying to do here.” Terry Pirovolakis, Rare Dad. 

Sanath and Ramya have gained great strength from the community of Rare parents. On this episode, we talk to Terry Pirovolakis, another father who is looking for a cure and treatment for his son Michael’s condition.  They have found ways to work with each other and with other families. They are growing a community from scratch. 

We talk about the benefits that such a grass-roots community provides. They are able to raise questions and get advice in a comfortable and safe space. They have learned how to set expectations for each other to keep the community strong. Terry talks about the brave parents who have gone before them and those who will inevitably follow.   

Technologies will come and go, families will join and stay as long as they need to, and this community continues to exist for them.  The stories of all these families create a rich history that inspires, educates, and strengthens parents who are on the quest for help for their kids.  

 You can donate to Terry's fight for Michael at https://cureSPG50.org

This is part 1 of 2. Next time, we will talk to Terry about his Fundraising efforts and progress.  


Sound Design and Music: Jacob Tompkins

Graphics: Ramya Ramaswamy

Show artwork for Raising Rare

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.
Donate to Cure SSMD

About your hosts

Sanath Kumar Ramesh

Profile picture for Sanath Kumar Ramesh

Kevin Freiert

Profile picture for Kevin Freiert