Episodes 25
Avg. Duration 1h 16m
Activity Highly Active
Apple Rating 5.0 (10)
Since Dec 2024
Latest Episode May 2026

Publishing Details

Schedule
Every 2 Weeks
Format
Episodic
Hosting
anchor.fm

Contact & Outreach

About This Podcast

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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Recent Episodes

S1E24 GY007: A Baker's Yeast That Eats Galactose, with Dr. Judy Fridovich-Keil and Dr. Shauna Rasmussen

May 11, 2026 1h 29m

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…

S1E23 Why BridgeBio Stopped Galactosemia Gene Therapy

Feb 11, 2026 18m

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…

S1E22 Gene Therapy for Galactosemia: Feat. Mandy and Clayton from BridgeBio

Sep 17, 2025 1h 5m

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…

S1E21 Maureen Bell's Story of Living with Galactosemia

Sep 07, 2025 46m

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…

S1E20 Exploring Bone Marrow Transplant in Galactosemia

Aug 22, 2025 1h 24m

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,…

S1E19 Navigating State Services and First Foods: Elliot's One Year Update

Aug 16, 2025 36m

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…

S1E18 Recapping Our Tour of a Gene Therapy Lab - with Jamie Hiegel

Jul 03, 2025 1h 4m

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…

S1E17 Reading Test Results: Feat. Dr. Michael Gambello & Dr. Tricia Hall

Jun 13, 2025 1h 23m

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…

S1E16 Speech Therapist & Galactosemia Parent: Feat. Zara & Fin Betts

May 29, 2025 1h 2m

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…

S1E15 The Voice of the Patient Report: PFDD Meeting

May 15, 2025 1h 37m

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…

S1E14 The Science Behind Babbling with Dr. Beate Peter

May 07, 2025 1h 8m

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…

S1E13 Primary Ovarian Insufficiency & Purple Sweet Potatoes with Dr. Synneva Hagen Lillevik

May 01, 2025 1h 12m

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…

S1E12 Understanding the Galactosemia Diet with Dr. Sandy Van Calcar

Apr 17, 2025 1h 20m

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.…

S1E11 GLOW for Galactosemia 2025 feat. Jamie Heigel

Apr 09, 2025 1h 21m

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…

S1E10 When Every Day is Advocacy feat. Gillian Sapia

Apr 02, 2025 1h 24m

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…

S1E9 Navigating Life and Fundraising for Galactosemia – Feat. Brittany Cudzilo

Mar 26, 2025 1h 21m

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…

S1E8 A Delayed Diagnosis & A Rare Complication - Feat. Becca Jones

Mar 12, 2025 1h 19m

thegalactosemiapodcast.com - support the show; ad-free and early access episodesTo contribute to the new parent episode, send an email to [email protected] Details: Record a video in a…

S1E7 New Treatments, Big Questions: What’s next for Galactosemia? Feat. Dr. Estela Rubio Gozalbo

Mar 05, 2025 1h 14m

thegalactosemiapodcast.com - support the show; ad-free and early access episodesTo contribute to the new parent episode, send an email to [email protected] Details: Video recording in…

S1E6 Babble Bootcamp: Speech Support & Early Intervention feat. Dr. Nancy Potter

Feb 26, 2025 1h 24m

thegalactosemiapodcast.com - support the show; ad-free and early access episodesLinks & Resources Mentioned:Babble Bootcamp -…

S1E5 The Battle for NIH Funding: Impact on Galactosemia Research

Feb 19, 2025 55m

thegalactosemiapodcast.com - support the show; ad-free and early access episodesLinks & Resources Mentioned:Find your senators & representatives:…

Frequently Asked Questions

How many episodes does The Galactosemia Podcast have?

The Galactosemia Podcast has published 25 episodes since December 2024, covering topics in Health & Fitness, Medicine.

Is The Galactosemia Podcast still active?

The Galactosemia Podcast is currently highly active with new episodes every 2 weeks. Average episode length is 1h 16m.

How do I contact The Galactosemia Podcast for sponsorship or guest appearances?

Sign up on Grep.FM to access contact details for The Galactosemia Podcast, including email and social media links.

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