In this episode of The Galactosemia Podcast, we’re joined by Dr. Synneva Hagen Lillevik, a registered dietitian and researcher, to explore her groundbreaking work on the potential benefits of purple sweet potatoes in treating Classic Galactosemia. Dr. Hagen Lillevik shares insights from her recent studies, offering hope and new directions for dietary management of this rare condition.

thegalactosemiapodcast.com – support the show; ad-free and early access episodes

Links & Resources Mentioned:

• Purple Sweet Potato Study - https://www.mdpi.com/1422-0067/23/15/8654

  
  

  Guest Bio – Dr. Synneva Hagen LillevikDr. Synneva Hagen Lillevik is a registered dietitian and a postdoctoral research fellow with a robust background in nutrition and metabolic disorders. She completed her PhD at the University of Utah, where her research significantly advanced the understanding of primary ovarian insufficiency in Classic Galactosemia. Dr. Hagen Lillevik is particularly noted for her pioneering work on the use of purple sweet potatoes to mitigate oxidative stress associated with metabolic disorders. Currently, she continues her research at the University of Colorado Anschutz Medical Campus, focusing on nutrition’s role in preventing and managing gestational diabetes. Her work exemplifies a deep commitment to integrating clinical practice with research to improve patient outcomes in rare metabolic diseases.

  
  

  Episode Chapters:

  0:00 – Introduction to the Episode and Overview of Dr. Synneva Hagen Lillevik’s Work

  2:00 – Dr. Synneva Hagen Lillevik: A Journey Through Nutrition and Metabolic Research

  4:30 – Exploring the Potential of Purple Sweet Potatoes in Classic Galactosemia Treatment

  7:00 – Investigating Primary Ovarian Insufficiency in Classic Galactosemia Patients

  11:00 – The Broader Impacts of Dr. Hagen Lillevik’s Research on Patient Care

  15:00 – Future Research Directions and the Promise of Dietary Interventions

  20:00 – Nutritional Strategies and Dietary Management of Galactosemia

  25:00 – Listener Q&A: Practical Advice on Diet and Daily Management of Galactosemia

  30:00 – The Critical Role of Antioxidants in Managing Symptoms of Galactosemia

  38:00 – Behind the Scenes: The Motivations and Aspirations of a Galactosemia Researcher

  42:00 – Building a Supportive Community for Rare Diseases Through Research and Advocacy

  45:00 – Conclusion: Key Takeaways and Closing Thoughts on Galactosemia Research

  
  

In this episode of The Galactosemia Podcast, Ryan sits down with Dr. Sandy Van Calcar—registered dietitian, researcher, and one of the leading experts on dietary management of classic galactosemia. From growing up on a dairy farm to leading research that shaped today’s international guidelines, Dr. Van Calcar brings decades of experience and clarity to a topic that can be overwhelming for new families.

Together, they dive deep into the science and practical realities of managing the galactosemia diet, breaking down essential concepts like endogenous galactose production, free vs. bound galactose in food, and why some aged cheeses may actually be safe to eat.

She also shares the story of how her team tested dozens of foods—including cheeses and legumes—to inform the current recommendations. Plus, they discuss bone health, label reading, and why parents shouldn’t panic if a mistake happens.

thegalactosemiapodcast.com – support the show; ad-free and early access episodes

Join or donate to the galactosemia podcast GLOW team: https://runsignup.com/elliotscrew

Resources mentioned:

• International Galactosemia Guidelines: https://pmc.ncbi.nlm.nih.gov/articles/PMC5306419/

• Guideline Supplementary Content: https://pmc.ncbi.nlm.nih.gov/articles/instance/5306419/bin/10545_2016_9990_MOESM1_ESM.pdf

• Dr. Van Calcar’s presentation PDF: https://docs.google.com/presentation/d/1z8tuyvAENH-jAKtp8WL0RkTv3QquiZYM/edit?usp=sharing&ouid=115342045423373001199&rtpof=true&sd=true

• Published Papers from the Cheese and Food Testing Research:

• • https://drive.google.com/file/d/1iIlhQ1n23lL26HXTFpcfmQO1fomPcVoc/view?usp=sharing

  • https://drive.google.com/file/d/1u6kwjcjZaM-wLRD8nt7lHThnjrClW7ui/view?usp=drive_link

Guest Bio:

Dr. Sandy Van Calcar is a registered dietitian and researcher specializing in inborn errors of metabolism, with a particular focus on classic galactosemia. She holds a PhD in Nutritional Sciences and currently works at Oregon Health & Science University in the Department of Molecular and Medical Genetics.

Dr. Van Calcar has been instrumental in shaping modern dietary guidelines for galactosemia. She’s known for her groundbreaking work analyzing galactose content in foods, including leading a task force that tested aged cheeses and other products for their safety. She’s also a key contributor to the International Galactosemia Guidelines and a founding member and past president of Genetic Metabolic Dietitians International.

Her unique background—from growing up on a dairy farm to becoming a national voice in metabolic nutrition—makes her one of the most trusted experts in this space.

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.

thegalactosemiapodcast.com – support the show; ad-free and early access episodes

📣 To contribute to the new parent episode, email: thegalactosemiapodcast@gmail.com

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?

• Glow Fundraiser: glowforgalactosemia.org
  

• Join or donate to the galactosemia podcast GLOW team: https://runsignup.com/elliotscrew
  

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