Hosted by Ryan and Jill · 🇺🇸 US · EN-US · 24 episodes
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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.
Ryan and Jill hosts The Galactosemia Podcast, a health show with 24 episodes published.
In this episode, Ryan sits down with two veterans of the show — Dr. Judy Fridovich-Keil and Dr. Shauna Rasmussen, both of Emory University — to walk through a recent study from their lab in collaboration with a small bio
BridgeBio recently stopped their research and development of gene therapy for Galactosemia. This came as a shock to many of us. I talked to the CEO of BridgeBio on the phone, and in this episode I report back what he tol
In this episode of The Galactosemia Podcast, Ryan sits down with Clayton Beard and Mandy Rohrig from BridgeBio to explore the promise and challenges of gene therapy for galactosemia. They break down how gene replacement
In this episode of The Galactosemia Podcast, I sit down with Maureen Bell, who was diagnosed with classic galactosemia just seven days after her birth in 1972—long before the condition was part of newborn screening. Maur
In this episode, we dive into new research on bone marrow transplantation as a potential approach to treating Classic Galactosemia. Dr. Judy and her team share insights from their recent study, walking us through why the
After a short hiatus, Ryan and Jill return to share an in-depth update on life with their one-year-old son, Elliot, who has classic galactosemia. They walk through their months-long journey applying for and securing earl
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 gal
In this episode, Ryan sits down with two of the top experts in the field to break down what galactosemia test results actually mean. Joining the show are Dr. Tricia Hall, a biochemical genetics lab director at Mayo Clini
In this episode Ryan sits down with Zara Betts, a seasoned speech and language therapist, mother of two boys with classic galactosemia, and a powerful voice for early intervention. Joining her is her 12-year-old son Fin,
In this week’s episode we look back at the PFDD meeting that led to the Voice of The Patient Report, a landmark document in the fight for better treatment options for those living with Classic Galactosemia thegalactosemi
In this episode, we dive deep into the groundbreaking science behind Babble Bootcamp, a pioneering early intervention program for children at risk of severe speech disorders. We talked to Dr. Beate Peter: geneticist, spe
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 tre
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 d
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 bor
In this episode we sit down with Gillian Sapia, a registered nurse, rare disease advocate, and mom to Penelope, who lives with classic galactosemia. Gillian leads advocacy efforts for the Galactosemia Foundation and work
In this episode of The Galactosemia Podcast, we sit down with Britt Cudzilo, mother of four, Vice President of the Galactosemia Foundation, and founder of the annual GLOW fundraiser. Two of Britt’s daughters have classic
thegalactosemiapodcast.com - support the show; ad-free and early access episodes To contribute to the new parent episode, send an email to thegalactosemiapodcast@gmail.com Details: Record a video in a quiet room, keep it
thegalactosemiapodcast.com - support the show; ad-free and early access episodes To contribute to the new parent episode, send an email to thegalactosemiapodcast@gmail.com Details: Video recording in a quiet room, under
thegalactosemiapodcast.com - support the show; ad-free and early access episodes Links & Resources Mentioned: Babble Bootcamp - https://www.northernspeech.com/competency-courses/babble-boot-camp-basic-training/ Apraxia K
thegalactosemiapodcast.com - support the show; ad-free and early access episodes Links & Resources Mentioned: Find your senators & representatives: https://www.congress.gov/members/find-your-member NIH Budget Cut Order:
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The Galactosemia Podcast is hosted by Ryan and Jill. The show is categorised under health (fitness) and has published 24 episodes.
The Galactosemia Podcast has published 24 episodes.
The Galactosemia Podcast regularly covers health, fitness, medicine. It sits in the health category, with a fitness focus.
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Episodes of The Galactosemia Podcast average 71 minutes, giving guests a long-form format with plenty of time to expand on their expertise.
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