In this episode of The Galactosemia Podcast, we sit down with Jamie Heigel, a high school science teacher, former All-American track athlete, and race director for the 2025 GLOW for Galactosemia fundraiser. Jamie was born with classic galactosemia and shares how the condition has shaped—but not defined—his life.
Jamie walks us through his early experiences with speech and learning delays, the incredible support from his parents and tutors, and how galactosemia has influenced his discipline in academics and athletics. He opens up about the challenge of developing epilepsy during college, how medication impacted his emotions, and how his wife Bri became his partner in life and advocacy.
Jamie also reflects on taking over the GLOW 5K, building community awareness, and teaching biology while living with a rare metabolic disorder himself.
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Details: Record a video in a quiet room, under 3 minutes. Include your name, your relationship to galactosemia, and a message to a parent who has just received a diagnosis. Thought starters: What advice or words of comfort would you share?
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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.
0:00 – Intro & Updates
2:00 – Meet Jamie & the GLOW 5K
4:30 – Childhood Memories & Food Restrictions
7:00 – Growing Up with CG
11:00 – Early Intervention & Learning Challenges
15:00 – Dyslexia, Social Cues, and Finding Community
20:00 – Discovering Running & Discipline
25:00 – Surgery, Recovery & Training
30:00 – College Years, Epilepsy, and Medication
38:00 – Teaching High School Science with CG
42:00 – How Students React to Learning About Galactosemia
45:00 – Introducing Jamie’s Wife, Brie
46:00 – Their Relationship & Navigating Food as a Couple
51:00 – Wedding Planning with CG in Mind
54:00 – Best Dairy-Free Products & Snacks
56:00 – Brie on Advocacy and Understanding
59:00 – Glow 2025: Taking the Baton from Britt Cudzilo
1:04:00 – Fundraising, Self-Promotion & Community Impact