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.
Sign up for our newsletter!
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
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 disease, 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.
The Good, The Bad and The Ugly: How to Approach Unsolicited Advice and Unexpected Actions That Made Your Day
Title: The Good, The Bad and The Ugly: How to Approach Unsolicited Advice and Unexpected Actions That Made Your Day
Date: Tuesday, April 15, 2025
Time: 12 PM CST / 1 PM EST
Moderator: Tiffany House
Have You Ever Considered Getting a Service Dog?
Session DetailsTitle: Have You Ever Considered Getting a Service Dog? Date: Friday, March 7, 2025 Moderator:Margaret Koehler Summary:Join me for this Talking With Your Pompe Peeps session, where we’ll dive into everything you need to know about Service Dogs! Deciding...