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
The Importance of Being Resilient
Title: The Importance of Being Resilient: Finding Hope When Life Gets Hard
Date: Tuesday, September 29, 2026
Time: 6 p.m. CT / 7 p.m. ET
Moderator:
Dwayne Wilson
Summary:
This session focuses on the emotional side of living with 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.: staying resilient through diagnosis, loss, physical changes, and the everyday challenges that come with a rare, progressive condition, and finding hope even when life feels hardest. Participants are invited to share their own experiences and to hear how others in the community have found strength, purpose, and positivity along the way.
Setting Sail with Pompe Disease
Title: Setting Sail with Pompe Disease
Date: Friday, August 14, 2026
Time: 1 p.m. CT / 2 p.m. ET
Moderator:
Morgan Burroughs
Summary:
Cruising can be one of the most accessible ways to travel with Pompe disease, but planning one takes some know-how. In this session, our moderator shares a firsthand account of cruising with Pompe, walking through how to request and secure accommodations through the cruise line before departure, what the boarding process was like, what it was like leaving the ship for port excursions and how accessibility factored into those experiences, how energy levels and daily routines varied on sea days versus port days, and how food and accessibility held up throughout the ship. Join us for practical tips and real world insight for anyone with Pompe disease considering a cruise.
Campus Ready: Two Perspectives on College Life with Pompe Disease
Session DetailsTitle: Campus Ready: Two Perspectives on College Life with Pompe Disease Date: Wednesday, July 29, 2026 Moderators:Haley HayesMargaret Koehler Session Overview:From campus accessibility and disability services to managing infusionsA method of delivering medication through an IV. and enzymeA protein that helps the body carry out chemical reactions....