The Galactosemia Podcast

Ryan and Jill
  • 5.0 (11)
  • Medicine
  • Updated Weekly

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.

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  1. Jul 22

    Welcome New Listeners - What Is This Podcast?

    In this short episode, Ryan shares why he started the podcast after his son Elliot was diagnosed with classic galactosemia, the questions that drove him to search for better answers, and the mission behind creating a place where families, patients, researchers, and clinicians can learn from one another. Whether you’re a newly diagnosed family, an adult living with galactosemia, a caregiver, or a healthcare professional, this episode is the perfect introduction to what you’ll find here. Ryan also highlights some of the podcast’s most recommended episodes and gives a preview of what’s coming next, including interviews and presentations inspired by the 2026 Galactosemia Connect Conference.

  2. Jul 16

    GY007: A Baker's Yeast That Eats Galactose, with Dr. Judy Fridovich-Keil and Dr. Shauna Rasmussen

    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 biotech called GutsyBio. The study tested whether a specially selected strain of baker's yeast (Saccharomyces cerevisiae), called GY007, could break down dietary galactose in the gut before it ever reaches the bloodstream. In the rat model, it worked: rats that received the yeast before being given galactose did not show the same Gal-1-P or galactitol spikes in plasma and brain that the untreated rats did.

  3. Jul 8

    What To Expect: Galactosemia Conference 2026

    Conference Schedule: https://galactosemia.org/wp-content/uploads/2026/07/GF-Conference-Packet-2026-1.pdfIn this episode, Ryan sits down with Britt Cudzilo to walk through what to expect, from the new Scientific Day and breakout sessions to research opportunities, networking, and the social events that make conference so special. Whether it’s your first conference or your fifth, this episode will help you make the most of the weekend.

  4. Feb 11

    Why BridgeBio Stopped Galactosemia Gene Therapy

    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 told me.

  5. 09/17/2025

    Gene Therapy for Galactosemia: Feat. Mandy and Clayton from BridgeBio

    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 works, why viruses are used as delivery systems, and what families should know about the current state of research. To get in touch with Mandy - Amanda.Rohrig@bridgebio.com

  6. 09/07/2025

    Maureen Bell's Story of Living with Galactosemia

    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. Maureen shares what it was like growing up in the seventies, eighties, and nineties with galactosemia, from childhood struggles and dietary restrictions to the emotional challenges of premature ovarian insufficiency. Now 53, Maureen reflects on how the galactosemia diet has evolved over the decades, what it meant to be part of the very first galactosemia conference, and how she turned personal challenges into powerful advocacy—including speaking at national conferences and even before Congress.

  7. 08/22/2025

    Exploring Bone Marrow Transplant in Galactosemia

    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 they pursued this line of research, how the experiments were designed, and what they discovered. We talk about the role of biomarkers, the challenges of translating findings from animal models to human patients, and the importance of continued NIH funding to push rare disease science forward. Along the way, the team reflects on their own experiences in the lab and what it means to see their work connect to families living with Galactosemia

  8. 08/16/2025

    Navigating State Services and First Foods: Elliot's One Year Update

    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 early intervention services in California—what worked, what took far too long, and how they successfully advocated for speech therapy before the typical 18-month threshold. Along the way, they discuss the challenges and wins of Elliot’s first year with solid foods, navigating dietary restrictions, and discovering his first words.

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5
out of 5
11 Ratings

About

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.

Information

  • Creator
    Ryan and Jill
  • Years Active
    2024 - 2026
  • Episodes
    28
  • Rating
    Clean
  • Copyright
    © Ryan and Jill
  • Show Website
    The Galactosemia Podcast
  • Provider
    Ryan Faucett

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