We don’t have any Talking With Your Pompe Peeps sessions scheduled at the moment, but more exciting sessions are on the way! Check back soon for details, or sign up for our newsletter to be notified when new webinars are announced.
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Guide the Next Pompe Conversation
We’d love your input! Use this form to share feedback on past sessions, suggest topics you’d like to see covered, or volunteer as a moderator for an upcoming discussion. Your voice helps us shape meaningful conversations for the Pompe community.
Past Sessions
Infusion Day Playbook: Stories, Tips, and Support
Title: Infusion DayThe day a person receives infusion treatment, often as part of a regular routine. 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:
InfusionsA method of delivering medication through an IV. 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.
Spooky Soirée – Enjoying Halloween with PD for You and Your Kiddos Part 2
Title: Spooky Soirée – Enjoying Halloween with PD for You and Your Kiddos Part 2
Date: Wednesday, October 22, 2025
Time: 1 PM CST / 2 PM EST
Moderator:
TBD
Summary:
Calling all Pompe Parents! Are you stuck thinking up costume ideas? Have you made an awesome one that you would like to share? This is your chance to share and help each other. Halloween can be a challenging time for many parents when it comes to finding the right costumes. For our Pompe kiddos, there can be added challenges when mobility issues are involved. Do you need help? Do you have suggestions? Join us and share! Please share your past costume photos!
Back to School with Pompe: Real Talk for Real Parents
Title: Back to School with Pompe: Real Talk for Real Parents
Date: Wednesday, August 13, 2025
Time: 9 AM CST / 10 AM EST
Moderator:
Colleen Sackos
Summary:
This time of year is a stressful time for every parent, as kids all over the country start preparing to go back to school. Add on the stress of managing Pompe diseaseA rare genetic disease in which the body cannot properly break down glycogen, leading to buildup that damages muscles and can affect breathing and, in some cases, the heart., and it can easily become overwhelming. You are not alone! Come bringing your questions, concerns, and even your expertise, and let’s talk them out. Whether it’s setting up 504 plans, educating school staff, or balancing academics and medical care—this is a supportive space for real conversation and community connection.