About the AMDA
Recent News / Articles
Grief and Rare Disease: Recognizing Loss and Building Grief Literacy
This past May, our hearts broke twice....
Closing the Gaps: Pompe Disease Newborn Screening and the Importance of RUSP Alignment
A Milestone for Pompe Families This...
Three Decades of Impact: Celebrating 30 Years of the AMDA
A Legacy of Leadership, Love, and...
2024 Helen Walker Research Grant Recipient: Dr. Jaymin Upadhyay, Boston Children’s Hospital, Harvard Medical School
The winner of the 2024 AMDA Helen...
Texas Adds Pompe Disease to Newborn Screening Panel—A Historic Milestone Coinciding with the AMDA’s 30th Anniversary
Great news for the rare disease...
A Heartfelt Thank You to Our Community
A Heartfelt Thank You to Our Community...
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We don’t have a webinar scheduled at the moment, but more exciting sessions are on the way! Check back soon for details, or sign up for our newsletter to be notified when new webinars are announced.
Upcoming Talking With Your Pompe Peeps Session

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!
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