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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Past Sessions
Our Adaptations with Pompe Disease
Living with Pompe disease often means finding new ways to adapt. In this Talking With Your Pompe Peeps (TWYPP) session, George, a dad of a young adult diagnosed with Pompe disease, facilitates a peer-led conversation about the everyday adaptations families and individuals make to support fuller, more meaningful lives. Participants are invited to share what has worked for them and learn from one another’s experiences.
Infusion Day Playbook: Stories, Tips, and Support
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.
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!