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
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 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.
Have You Ever Considered Getting a Service Dog?
Session DetailsTitle: Have You Ever Considered Getting a Service Dog? Date: Friday, March 7, 2025 Time: 1 PM CST / 2 PM EST Moderator: Margaret Koehler Summary:Join me for this Talking With Your Pompe Peeps session, where we’ll dive into everything you need to know...