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 Time: 1 p.m. CT / 2 p.m. ET Moderator:Morgan Burroughs Session Overview:Cruising can be one of the most accessible ways to travel with Pompe disease, but planning one takes some...
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 Time: 1 p.m. CT / 2 p.m. ET Speaker:Deeksha Bali, PhD, FACMG Webinar Overview:This webinar examines...
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...
May 2026 The following story was written by Courtney, Rachel’s daughter, and submitted to us to share her mother’s experience. We are grateful for her willingness to give us this window into their family’s journey. While we strive to share accurate...
Webinar Details Title: Mental Health for Pompe Disease: The Importance of Being Understood Date: Thursday, May 14, 2026 Speakers:Heather ShortenNadia Bodkin, Pharm. D., MSJC Muyl Webinar Overview:Living with Pompe disease means navigating far more than the physical...
