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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
Setting Sail with Pompe Disease
Title: Setting Sail 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.
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....
Therapeutic Outlets
Title: Therapeutic Outlets: How Hospitals Can Reduce Stays and Improve Patients’ Prognosis
Date: Wednesday, July 1, 2026
Time: 1 p.m. CT / 2 p.m. ET
Moderators:
Trevor Hedrich
Summary:
Because of the interconnected link between mental health and physical health, hospitals should focus on mental health as another avenue to improving patients’ stays. In this session we will discuss the idea of therapeutic outlets, their strengths and weaknesses, their challenges, and what we can do individually and as a group to help support this idea.