The Importance of Being Resilient

The Importance of Being Resilient

Webinar Details 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 Session Overview:This session focuses on the emotional side of living with Pompe disease:...

Reports of Nexviazyme Shipment Delays

August 7, 2026 Pompe Alliance, Marshall’s Mountain, Grant’s Giants, Pompe Warrior Foundation, Ryan Colburn of the Pompe Community, and the AMDA are working together to help patients obtain clear and timely information regarding reports of Nexviazyme...
Setting Sail with Pompe Disease

Setting Sail with Pompe Disease

Session Details Title: Setting Sail with Pompe Disease Date: Friday, August 14, 2026 Moderator:Morgan Burroughs Session Overview: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...
What Do Your Pompe Test Results Really Mean?

What Do Your Pompe Test Results Really Mean?

Webinar Details Title: What Do Your Pompe Test Results Really Mean? The Evolution of Pompe Diagnostics: The Past, Present, and Future Date: Thursday, August 20, 2026 Speaker:Deeksha Bali, PhD, FACMG Webinar Overview:This webinar examines Pompe disease diagnosis in the...
Therapeutic Outlets

Therapeutic Outlets

Session Details Title: Therapeutic Outlets: How Hospitals Can Reduce Stays and Improve Patients’ Prognosis Date: Wednesday, July 1, 2026 Moderator:Trevor Hedrich Summary:Because of the interconnected link between mental health and physical health, hospitals...
A Heartfelt Thank You to the Krueger Family

A Heartfelt Thank You to the Krueger Family

A Heartfelt Thank You to the Krueger Family The Acid Maltase Deficiency Association is deeply grateful to the Krueger family for their remarkable and generous donation to our organization. Their gift is a powerful testament to their compassion for all those affected...