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:...
Webinar Details Title: Biomarkers of Central Nervous System Involvement in Pompe Disease: New Learnings Date: Thursday, September 24, 2026 Time: 10 a.m. CT / 11 a.m. ET Speaker:Kristen Hagarty-Waite, PhD, RDN, LDN Webinar Overview:Central nervous system (CNS)...
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...
Every August, National Immunization Awareness Month (NIAM) puts a spotlight on one of the most effective tools we have to protect our health — vaccines. For the Pompe disease community, that message carries extra weight. Respiratory muscle weakness and impaired cough...
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...
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...
This month marks the 36th anniversary since the Americans with Disabilities Act (ADA) was signed into law by President George H.W. Bush. At its core, the civil rights law was enacted to help prevent discrimination that folks with disabilities may face. It is meant to...
Session Details Title: Campus Ready: Two Perspectives on College Life with Pompe Disease Date: Wednesday, July 29, 2026 Moderators:Haley HayesMargaret Koehler Session Overview:From campus accessibility and disability services to managing infusions and enzyme...
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 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...
