The Galactosemia Podcast

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 h...

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. 

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

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...

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 anim...

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 w...

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 galactosemia. We discuss the relationship between BridgeBio, Gondola BIo, and catalent, and we break down our evolving (and sometimes confused) understanding of how gene therapy works...

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 Clinic who oversees and signs out galactosemia lab results, and Dr. Michael Gambello, a clinical geneticist at Emory University with decades of experience helping families understand me...

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, who offers his own thoughtful, candid perspective on growing up with the condition. thegalactosemiapodcast.com – support the show; ad-free and early access episodes Links & Re...

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 thegalactosemiapodcast.com – support the show; ad-free and early access episodes Watch the full PFDD meeting or download the VOP Report here: https://rarediseases.org/externally-led-patient-focu...

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, speech-language researcher, and co-creator of Babble Bootcamp, to explore how her work is transforming outcomes for children with galactosemia, Down syndrome, and other early-identifi...

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. thegalactos...

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 fam...

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 inc...

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 works closely with the Haystack Project and EveryLife Foundation to represent rare disease families before the FDA and Congress. Gillian shares her personal journey: what life was like...

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 galactosemia. Britt shares the emotional journeys of both diagnoses, the stark differences in how galactosemia has affected each child, and how that led her to build one of the c...

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 under three minutes. Include your name, your relationship to galactosemia, and your message to a parent that has just received a new galactosemia diagnosis. Thought starters: Wha...

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 three minutes, your message to a parent that has just received a new galactosemia diagnosis.  Links & Resources Mentioned: Recent Research on Galactosemia Therapies: https://...

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 Kids Foundation - Apraxiakids.com GLOW for Galactosemia - glowforgalactosemia.org In this episode, we speak with Dr. Nancy Potter , speech-language pathologist and creator of Ba...

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: https://grants.nih.gov/grants/guide/notice-files/NOT-OD-25-068.html In this episode, we sit down with Dr. Judith Friedovich-Keil (Emory University), Dr. Nancy Potter (Wash...

thegalactosemiapodcast.com - support the show; ad-free and early access episodes Links & Resources Mentioned: Individuals with Disabilities Education Improvement Act (IDEA) Every Student Succeeds Act Section 504 of the Rehabilitation Act In this episode, we sit down with Dr. Karolyn Mauer, an expert in special education, to break down the educational landscape for children with galactosemia. D...

thegalactosemiapodcast.com - support the show; ad-free and early access episodes Links & Resources Mentioned: Galactosemia Foundation: galactosemia.org Dr. Berry’s Paper “Is prenatal myo-inositol deficiency a mechanism of CNS injury in galactosemia?” Link: https://drive.google.com/file/d/1nfWpURDtYK619CZbMHL0FrsHpTlyodW7/view?usp=sharing Grant Abstract “Optimal Window of Opportunity for Granul...

thegalactosemiapodcast.com - support the show; ad-free and early access episodes Links & Resources Mentioned: Galactosemia Foundation: galactosemia.org Foundation Newsletter Signup: galactosemia.org/newsletter Galactosemia Discussion Group Facebook: https://www.facebook.com/groups/183815918306215 Food and Drug Law Journal Article: "Vegan Dairy: How FDA Can Avoid Crying Over Spilled [Cow-Less]...

thegalactosemiapodcast.com - support the show; ad-free and early access episodes Links & Resources Mentioned: Check Rare Channel Video: https://youtu.be/baG02cOV7KQ?si=QjtM2DpU4uxc4UQw Contact Information for Dr. Judy’s Research Participation: jfridov@emory.edu Research Paper - “Rigor of non-dairy galactose restriction in early childhood, measured by retrospective survey, does not associate wi...

Coming Soon. A Podcast about Galactosemia