Session Details
Title: Infusion Day Playbook: Stories, Tips, and Support
Date: Thursday, January 29, 2026
Time: 7 PM CST / 8 PM EST
Moderator:
Alison Breitbarth, Grant’s Giants
Session Summary:
Infusions can feel overwhelming at first — and then, over time, they become part of life. In this Talking With Your Pompe Peeps session, Alison Breitbarth (Grant’s Giants) will help us talk openly about what it looks like to normalize infusion day for kids and families — while keeping the conversation welcoming for anyone navigating infusions at any age.
We’ll swap first infusion stories, share what helped (and what we wish we’d known), and trade practical tips for making the day smoother — from comfort items and routines to mindset shifts that build confidence. Alison will also share ideas behind her Infusion Play Kit, designed to bring playfulness into a day that can otherwise feel stressful.
Note: This discussion is for informational and community support purposes and is not medical advice.
Recording notice: This session will be recorded for internal review and possible educational use. If we share a recording publicly (including YouTube), we will post an edited version focused on general information and community tips, and we will remove participant personal stories and identifying details when possible.
If you prefer not to be recorded, you’re welcome to keep your camera off, change your display name, and/or participate via chat. If you have concerns, please contact us in advance.
Moderator Biography
Alison Breitbarth
President and Co-Founder, Grant’s Giants
Alison is the mother of two boys, Connor and Grant. Grant’s Pompe diagnosis is what inspired Grant’s Giants Nonprofit. Alison is passionate about raising awareness for newborn screening and Pompe disease and is very involved in the Pompe community. She is a Newborn Screening Ambassador and serves as the parent representative for the state of Indiana for the Unite Newborn Screening Learning Community. She has shared Grant’s story as a guest on the Upon a Gene podcast, at SparkX (hosted by Spark Therapeutics), at the Pediatric Pompe Conference at Duke, at the Lysosomal Storage Disorders meeting in Texas, and on several local Indianapolis news stations. She won the 2025 Sanofi TORCH Award for her incredible advocacy work in the Pompe community. She received her Bachelor of Arts degree in Elementary Education from Butler University.