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Past Sessions
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 enzyme replacement therapies is not foreign to the Pompe community. For many patients, having a portacath makes the infusion 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 disease 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 disease, 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.
Infusion Day Playbook: Stories, Tips, and Support
Title: Infusion Day Playbook: Stories, Tips, and Support
Date: Thursday, January 29, 2026
Time: 7 PM CST / 8 PM EST
Moderator:
Alison Breitbarth, Grant’s Giants
Session Summary:
Infusions can feel overwhelming at first — and then, over time, they become part of life. In this Talking With Your Pompe Peeps session, Alison Breitbarth (Grant’s Giants) will help us talk openly about what it looks like to normalize infusion day for kids and families — while keeping the conversation welcoming for anyone navigating infusions at any age.
We’ll swap first infusion stories, share what helped (and what we wish we’d known), and trade practical tips for making the day smoother — from comfort items and routines to mindset shifts that build confidence. Alison will also share ideas behind her Infusion Play Kit, designed to bring playfulness into a day that can otherwise feel stressful.