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
Biomarkers of Central Nervous System Involvement in Pome Disease
Title: BiomarkersA measurable sign in the body that helps track disease progression or treatment response. of Central Nervous System Involvement in 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.: New Learnings
Date: Thursday, September 24, 2026
Time: 10 a.m. CT / 11 a.m. ET
Speaker:
Kristen Hagarty-Waite, PhD, RDN, LDN
Summary:
Central nervous system (CNS) manifestations persist in patients with Pompe disease, despite enzymeA protein that helps the body carry out chemical reactions. replacement therapy, as current formulations cannot cross the blood brain barrier. Plasma glial fibrillary acidic protein (GFAP) and neurofilament light chain (NfL) have emerged as biomarkers to monitor CNS involvement in Pompe disease, particularly for those with the infantile-onset phenotype. In this presentation, we will share our learnings, so far, regarding biomarkers of CNS involvement.
Upcoming Talking With Your Pompe Peeps Session
The Importance of Being Resilient
Title: The Importance of Being Resilient: Finding Hope When Life Gets Hard
Date: Tuesday, September 29, 2026
Time: 6 p.m. CT / 7 p.m. ET
Moderator:
Dwayne Wilson
Summary:
This session focuses on the emotional side of living with Pompe disease: staying resilient through diagnosis, loss, physical changes, and the everyday challenges that come with a rare, progressive condition, and finding hope even when life feels hardest. Participants are invited to share their own experiences and to hear how others in the community have found strength, purpose, and positivity along the way.
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
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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
PO Box 700248
San Antonio, Texas 78270 USA