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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
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.
Our Adaptations with Pompe Disease
Living with Pompe diseaseA rare genetic disease in which the body cannot properly break down glycogen, leading to buildup tha... More often means finding new ways to adapt. In this Talking With Your Pompe Peeps (TWYPP) session, George, a dad of a young adult diagnosed with Pompe diseaseA rare genetic disease in which the body cannot properly break down glycogen, leading to buildup tha... More, facilitates a peer-led conversation about the everyday adaptations families and individuals make to support fuller, more meaningful lives. Participants are invited to share what has worked for them and learn from one another’s experiences.