Talking With Your Pompe Peeps Series Archive

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.

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....

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.

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?

Title: Home Infusions
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.

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.

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.

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.

Title: Back to School with Pompe: Real Talk for Real Parents
Date: Wednesday, August 13, 2025
Time: 9 AM CST / 10 AM EST
Moderator:
Colleen Sackos
Summary:
This time of year is a stressful time for every parent, as kids all over the country start preparing to go back to school. Add on the stress of managing Pompe disease, and it can easily become overwhelming. You are not alone! Come bringing your questions, concerns, and even your expertise, and let’s talk them out. Whether it’s setting up 504 plans, educating school staff, or balancing academics and medical care—this is a supportive space for real conversation and community connection.

Title: The Good, The Bad and The Ugly: How to Approach Unsolicited Advice and Unexpected Actions That Made Your Day
Date: Tuesday, April 15, 2025
Time: 12 PM CST / 1 PM EST
Moderator: Tiffany House

Session DetailsTitle: Have You Ever Considered Getting a Service Dog? Date: Friday, March 7, 2025 Moderator:Margaret Koehler Summary:Join me for this Talking With Your Pompe Peeps session, where we’ll dive into everything you need to know about Service Dogs! Deciding...

Title: Kaizen Your New Year’s Resolutions: Small Steps, Big Success!
Date: Wednesday, February 19, 2025
Time: 12 PM CST / 1 PM EST
Moderator: Matt Zimmerman
Summary:
“A new year, a new you.” Studies show about 80 percent of new year’s resolutions are abandoned by the month of February. How are you faring keeping up with yours? If you are struggling along with the rest of us, this session is for you! Pick up those abandoned resolutions and join us as we look at how adapting the Japanese business principle of “Kaizen” can help you with self-improvement, time management, and habit formation. Make 2025 the year you commit to keeping those resolutions!

Title: The Holidays – How to deal with stressors and fun family traditions
Date: Thursday, November 21, 2024
Time: 12 PM CST / 1 PM EST
Moderator:
Tiffany House

Title: Spooky Soirée – Enjoying Halloween with PD for You and Your Kiddos
Date: Tuesday, October 22, 2024
Time: 12 PM CT
Moderator: Tiffany House
Summary:
Calling all Pompe Parents! Are you stuck thinking up costume ideas? Have you made an awesome one that you would like to share? This is your chance to share and help each other. Halloween can be a challenging time for many parents when it comes to finding the right costumes. For our Pompe kiddos, there can be added challenges when mobility issues are involved. Do you need help? Do you have suggestions? Join us and share! Please share your past costume photos!
Also related to Halloween… have you found creative ways to deal with the massive candy haul? None of us want our kiddos to miss out on these experiences, but how can we modify when needed?