The Galactosemia Podcast
The Galactosemia Podcast
Podcast Description
The Galactosemia Podcast is a resource for understanding and navigating life with galactosemia. Whether you’re a new parent grappling with a recent diagnosis or a member of the community seeking updates, this podcast has you covered. Each episode dives deep into the science, treatments, and real-life experiences of families and experts dealing with this rare genetic condition. Join us as we interview doctors, researchers, and families to share insights, practical advice, and hope for the future.
Podcast Insights
Content Themes
The podcast focuses on a range of topics related to galactosemia, including scientific advancements, treatment options, and personal experiences. Episodes often dive into specific areas such as the complexities of the disorder, the role of early interventions, and community advocacy, with examples like the exploration of myo-inositol supplementation and its impact on treatment outcomes.
The Galactosemia Podcast is a resource for understanding and navigating life with galactosemia. Whether you’re a new parent grappling with a recent diagnosis or a member of the community seeking updates, this podcast has you covered. Each episode dives deep into the science, treatments, and real-life experiences of families and experts dealing with this rare genetic condition. Join us as we interview doctors, researchers, and families to share insights, practical advice, and hope for the future.
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
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