In this episode, Ryan and Jamie Hiegel recap their experience of getting invited to tour Catalent, a gene therapy lab. We were invited by Bridge Bio, a company currently working on gene therapy targeted at those with galactosemia. We discuss the relationship between BridgeBio, Gondola BIo, and catalent, and we break down our evolving (and sometimes confused) understanding of how gene therapy works. Jamie shares his perspective as an adult living with galactosemia, including why he would be first in line to volunteer for a future clinical trial. We also dive into Jamie’s recent honeymoon in the Galapagos and the unexpected challenges of managing a restricted diet abroad. 

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Guest Bios:

Jamie Heigel is a science teacher and certified athletic trainer in Richmond, VA. Diagnosed with classic galactosemia at birth, Jamie overcame early speech and learning challenges to become an All-American in track and field at Bridgewater College. He is now the race director for the GLOW 5K fundraiser and a passionate advocate for awareness, education, and community connection within the galactosemia world.

Episode Chapters:

00:00 Disclaimer: We Might Get This Wrong

01:28 Arriving in Baltimore and Beating the Heat

02:34 Why We Were Invited: BridgeBio, Gondola, and Catalent

04:15 What Catalent Actually Does

08:40 Explaining Galactosemia to the Lab Team

10:33 A Crash Course in Gene Therapy

14:22 Jamie would sign up for the trial

17:12 Risks, Hopes, and the Weight of Decision-Making

19:00 What Success Might Look Like in a Trial

24:00 Testing Galactose in Cheese

26:13 Measuring Success: Breath Tests, GAL-1-P, and Galactitol

31:06 The Challenge of Interpreting Biomarkers

33:03 Travel Anxiety: Managing Galactosemia on a Honeymoon Yacht

40:45 What Jamie Ate (And What He Avoided)

44:12 Takeaways for Traveling with Galactosemia

46:33 Moving to Richmond and Planning the Next Glow 5K

50:17 Wrapping Up