AMDA Webinar Program
The AMDA Webinar Program facilitates the exchange of information between the Pompe patient community and professionals that have expertise in the field.
Upcoming
Webinar
Mental Health for Pompe Disease: The Importance of Being Understood
Title: Mental Health for Pompe DiseaseA rare genetic disease in which the body cannot properly break down glycogen, leading to buildup tha... More: The Importance of Being Understood
Date: Thursday, May 14, 2026
Time: 12 p.m. CT / 1 p.m. ET
Speakers:
Heather Shorten
Nadia Bodkin, Pharm. D., MS
JC Muyl
Summary:
Living with Pompe diseaseA rare genetic disease in which the body cannot properly break down glycogen, leading to buildup tha... More means navigating far more than the physical realities of a complex, progressive condition. The emotional and psychological toll, including the uncertainty, the isolation, and the challenge of finding care that truly sees the whole person, is a dimension of this journey that is too often left unaddressed. This webinar brings together three advocates at the forefront of mental health and rare disease: Heather Shorten of Pompe Alliance, Nadia Bodkin of the Rare Advocacy Movement, and JC Muyl of Mental Health For Rare.
Drawing on community research and lived experience, our presenters will explore the unique emotional challenges tied to living with Pompe diseaseA rare genetic disease in which the body cannot properly break down glycogen, leading to buildup tha... More, why feeling understood matters so deeply, and what meaningful mental health support can look like for this community. Whether you are a patient, caregiver, healthcare provider, or advocate, this is an opportunity to be part of an important and long-overdue conversation about whole-person care in the Pompe diseaseA rare genetic disease in which the body cannot properly break down glycogen, leading to buildup tha... More community.
Upcoming Talking With Your Pompe Peeps Session
Let’s Talk Diet — The Real Talk
Title: Let’s Talk Diet — The Real Talk
Date: Thursday, May 28, 2026
Time: 12 p.m. CT / 1 p.m. ET
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?
Recording or reposting AMDA webinars or Talking With Your Pompe Peeps Sessions is prohibited without AMDA’s prior express written permission. Unauthorized use may result in takedown demands and legal action.
Video Library
Webinars
Talking With Your Pompe Peeps
AMDA/IPA International Pompe Patient & Scientific Conferences
2024 AMDA Pompe Conference
2019 AMDA Pompe Conference
2015 AMDA Pompe Conference
2011 AMDA Pompe Conference
2006 AMDA Pompe Conference
2001 AMDA Pompe Conference
Acid Maltase Deficiency Association
For the AMDA videos: All Rights reserved. No part of the AMDA's videos may be reproduced or transmitted in any form or by any means, electronic or mechanical, without the written permission of the copyright holder.
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
PO Box 700248
San Antonio, Texas 78270 USA