The Craziest F*ing Story We've Ever Heard | The Father Who Built a Gene Therapy
Sickboy
CBC
4.8 • 524 Ratings
🗓️ 19 August 2025
⏱️ 60 minutes
🧾️ Download transcript
Summary
Some people hit walls. Others knock them down, build a lab, raise millions, and call up strangers to make a genetically engineered mouse. When Terry Pirovolakis learned his young son Michael had SPG50 — a rare degenerative disease with no treatment and a grim prognosis — he didn’t spiral. He mobilized. In this jaw-dropping story of parental devotion and scientific hustle, Terry recounts how he went from IT consultant to biotech trailblazer, spearheading the development of a gene therapy from scratch. From homemade mice to confronting the Prime Minister, this episode is a whirlwind of heartbreak, grit, global collaboration, and unshakable hope. It’s not just about saving one child — it’s about lighting a path for thousands more.
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Transcript
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| 0:00.0 | It's becoming pretty clear that U.S. President Donald Trump is ripping up the political |
| 0:05.3 | playbook. |
| 0:05.8 | And when it comes to what it all means for Canada, well, as they say, it's complicated. |
| 0:09.8 | But our podcast, two blocks from the White House, is a way to make sense of it all. |
| 0:13.8 | Join me, Willie Lowry, and senior Washington correspondents, Paul Hunter and Katie Simpson |
| 0:18.6 | every week as we break down the headlines from Capitol Hill |
| 0:22.1 | with a Canadian spin. Find and follow two blocks from the White House on your favorite podcast |
| 0:27.3 | app, including YouTube. This is a CBC podcast. Hey folks. Okay, today on Sick Boy, holy smokes, what do you do when your kid is diagnosed with an |
| 0:43.7 | ultra rare disease and there's no treatment? Well, if you're today's guest, Terry Perivulakis, |
| 0:51.5 | you make it yourself. Terry co-founded Elpita Therapeutics, a company that went on to |
| 1:00.2 | develop a gene therapy for his son, Michael, who lives with SPG 50, which is a super rare |
| 1:07.9 | genetic condition, and it impacts movement and development. |
| 1:12.5 | In this conversation with Terry, we get into all of it. |
| 1:15.4 | We get into the grind of how this guy just left his IT job to literally start a pharmaceutical company. |
| 1:21.6 | We get into the science. |
| 1:23.3 | How does an IT guy go from that work to literally building a drug? |
| 1:28.7 | And of course, we dive into what it looks like when hope is the fuel that is pushing you |
| 1:35.1 | forward when the stakes are life and death. |
| 1:37.7 | This is a story about a dad, a team, and just an absolute moonshot that refused to quit. |
| 1:47.7 | It's hands down one of the wildest stories we've ever heard on the podcast, |
| 1:51.1 | and I cannot wait for you to listen to it. I hope you love it as much as we do. |
| 1:54.9 | And listen, if you want to support the podcast, please make sure you are following us |
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