Navigating Life and Fundraising for Galactosemia – Feat. Brittany Cudzilo

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.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 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.orgGalactosemia 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.pdfFDA 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 & Updates0:02:00 – Meet Britt Zillow0:04:45 – Life Before Galactosemia0:06:00 – Ansel’s Premature Birth & NICU Experience0:09:00 – The Diagnosis & Feeding Crisis0:13:00 – Adjusting at Home, Finding the Foundation0:17:00 – The Second Diagnosis: Louise0:24:00 – Comparing Development: Louise vs. Ansel0:27:00 – Creating GLOW: From Idea to Reality0:34:00 – Growth of GLOW & Community Impact0:40:00 – Stepping Back & Handing Off GLOW0:44:00 – Britt’s Role on the Galactosemia Foundation Board0:49:00 – The PFDD Meeting & Voice of the Patient Report0:52:00 – Creating the Galactosemia Handbook0:56:00 – Reflections on Therapies & Govorestat1:04:00 – Clinical Trials: The Emotional Toll and Family Impact1:08:00 – Final Reflections