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
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. More
Date: Wednesday, April 29, 2026
Time: 7 p.m. CST / 8 p.m. EST
Moderator:
Ashley Lloyd, BSN, RN
Summary:
Home infusionsA method of delivering medication through an IV. More 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. More run more smoothly.
A Personal Look at the Benefits of Having a Portacath
Title: A Personal Look at the Benefits of Having a Portacath
Date: Thursday, March 19, 2026
Moderator:
Lucas Garrett
Summary:
The concept of IV enzymeA protein that helps the body carry out chemical reactions. More replacement therapies is not foreign to the Pompe community. For many patients, having a portacath makes the infusionA method of delivering medication through an IV. More process easier. We invite you to take part in this TWYPP that offers personal insight into the advantages of having a portacath. The session is being led by Lucas Garrett of the AMDA, a longtime user of portacaths.