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
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.
Let’s Talk Diet — The Real Talk
Title: Let’s Talk Diet — The Real Talk
Date: Thursday, May 28, 2026
Moderators:
AMDA Staff
Summary:
We all know eating well matters, but let’s be honest, actually sticking to a diet is hard. Life gets busy, cravings are real, and sometimes the foods we’re “supposed” to eat just don’t excite us. Living with Pompe adds another layer to that challenge, and nobody gets that better than your Pompe Peeps.
This session is all about having an open, honest conversation about why diet matters for our community, the everyday struggles of staying on track, and — the fun part — swapping recipes that actually taste good. We’ll kick things off with a few recipes to get the ideas flowing, but we really want to hear from you. What’s on your plate? What works? What doesn’t?
Home Infusions
Title: Home InfusionsA method of delivering medication through an IV.
Date: Wednesday, April 29, 2026
Time: 7 p.m. CST / 8 p.m. EST
Moderator:
Ashley Lloyd, BSN, RN
Summary:
Home infusions can feel overwhelming at first. Join Ashley Lloyd, BSN, RN, for a practical discussion on how to prepare, what to expect, and ways to make infusion daysThe day a person receives infusion treatment, often as part of a regular routine. run more smoothly.
