The AMDA’s Talking With Your Pompe Peeps Series
Welcome to the AMDA’s Talking With Your Pompe Peeps Series. This is a special series of open-forum style presentations born from feedback we received from our 2024 AMDA/IPA International Pompe Patient and Scientific Conference. These presentations are meant to connect the Pompe community and foster support amongst its members. Each session is moderated by a member of the community who will present and guide the discussion while encouraging participants to share their unique experiences and views. Together we are stronger!
Upcoming Sessions
Our Adaptations with Pompe Disease
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.
Recording or reposting Talking With Your Pompe Peeps meetings is prohibited without the AMDA’s prior express written permission. Unauthorized use may result in takedown demands and legal action.
Past Sessions
Spooky Soirée – Enjoying Halloween with PD for You and Your Kiddos Part 2
Title: Spooky Soirée – Enjoying Halloween with PD for You and Your Kiddos Part 2
Date: Wednesday, October 22, 2025
Time: 1 PM CST / 2 PM EST
Moderator:
TBD
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!
Back to School with Pompe: Real Talk for Real Parents
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.
The Good, The Bad and The Ugly: How to Approach Unsolicited Advice and Unexpected Actions That Made Your Day
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
Have You Ever Considered Getting a Service Dog?
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...
Kaizen Your New Year’s Resolutions: Small Steps, Big Success!
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!
The Holidays – How to deal with stressors and fun family traditions
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
Spooky Soirée – Enjoying Halloween with PD for You and Your Kiddos
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?
Balancing Pompe (School, Work, and Life): How Do You Balance Yours?
Title: Balancing Pompe (School, Work & Life): How Do You Balance Yours?
Date: Tuesday, September 24, 2024
Time: 12 PM CT
Moderator: Tiffany House
Summary:
This Open Forum Discussion will focus on exploring the various ways members of the Pompe community juggle all of the things life throws their way. Come join the conversation!
The Elementary School Experience: Building Success for IOPD/LOPD Children Through Collaboration and Partnership!
Title: The Elementary School Experience: Building Success for IOPD/LOPD Children Through Collaboration and Partnership!
Date: August 16, 2024
Time: 1 PM CT
Moderator: Colleen Sackos
Summary:
This presentation will entail how to create partnerships and collaboration between key stakeholders (family, general education team, special education team, healthcare team, etc.) for IOPD/LOPD children in elementary school. While every child’s journey is unique, ALL children have a right to experience growth and success as a student! Topics include 504 plans, IEPs, how to prepare for transitioning to elementary school, and time for questions and answers. We can all learn from each other!
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.
Acid Maltase Deficiency Association
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If you are interested in learning more about Pompe Disease and would like to make a contribution in support of necessary research, please contact us at:
info@amda-pompe.org
THE AMDA
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San Antonio, Texas 78270 USA