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 community’s most impactful fundraisers.

She opens up about the traumatic NICU experience with her daughter Ansel, how she balanced care for a newborn with two other young children at home, and the grief she experienced. Britt also talks about founding the GLOW run (and handing it off), her role with the Galactosemia Foundation, and the behind-the-scenes work of building trust with pharmaceutical partners.

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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: What advice/words of comfort or wisdom would you give to a parent that just received a galactosemia diagnosis?

Links & Resources Mentioned:

Glow Fundraiser: glowforgalactosemia.org

Galactosemia Handbook (from the Foundation + Jaguar Gene Therapy): https://galactosemia.org/resources/galactosemia-handbook/

Voice of the Patient Report: https://rarediseases.org/wp-content/uploads/2023/05/Galactosemia-VOP-Report-FINAL-05.01.2023.pdf

FDA PFDD Meeting video: https://rarediseases.org/externally-led-patient-focused-drug-development-meeting-for-galactosemia/

Guest Bios:

Brittany Cudzilo is a Knoxville-based mother, advocate, and Vice President of the Galactosemia Foundation. Two of her daughters live with classic galactosemia. In 2018, Britt founded the GLOW fundraiser, which has raised over $200,000 for galactosemia research and support. She now leads pharmaceutical outreach and advocacy efforts on behalf of the Foundation and has helped create major resources like the Galactosemia Handbook and the PFDD meeting with the FDA.

0:00:00 – Intro & Updates

0:02:00 – Meet Britt Zillow

0:04:45 – Life Before Galactosemia

0:06:00 – Ansel’s Premature Birth & NICU Experience

0:09:00 – The Diagnosis & Feeding Crisis

0:13:00 – Adjusting at Home, Finding the Foundation

0:17:00 – The Second Diagnosis: Louise

0:24:00 – Comparing Development: Louise vs. Ansel

0:27:00 – Creating GLOW: From Idea to Reality

0:34:00 – Growth of GLOW & Community Impact

0:40:00 – Stepping Back & Handing Off GLOW

0:44:00 – Britt’s Role on the Galactosemia Foundation Board

0:49:00 – The PFDD Meeting & Voice of the Patient Report

0:52:00 – Creating the Galactosemia Handbook

0:56:00 – Reflections on Therapies & Govorestat

1:04:00 – Clinical Trials: The Emotional Toll and Family Impact

1:08:00 – Final Reflections