TOP NEWS

Reports of Nexviazyme Shipment Delays

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 shipment and release delays.

At this time, the delays being reported to our organizations involve some shipments of Nexviazyme. We have not received confirmation that Lumizyme is currently affected, but patients using either treatment may wish to verify their upcoming shipment.

This appears to be a product-release and distribution timing issue — not evidence of a safety or quality problem with medication that has already been released. Patients should not panic or make treatment changes without speaking with their prescribing medical team.

In June 2026, the FDA issued a warning letter following a January inspection of a Sanofi facility in Waterford, Ireland. Sanofi has publicly stated that products released from the facility meet established quality and safety specifications. The FDA warning letter does not specifically identify Nexviazyme or Lumizyme as affected products, and we cannot independently confirm the precise cause of every current shipment delay.

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OTHER NEWS

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 by Pompe disease and their commitment to...

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2026 PCMA Pull for Pompe Fundraiser

The AMDA is excited to announce that the 15th Annual PCMA's Pull for Pompe fundraiser will take place on Saturday, May 2, 2026, from 8 a.m. to 2 p.m. CST at the National Shooting Complex in San Antonio, Texas! The Pull for Pompe clay shooting event is designed for all...

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With Gratitude: Honoring Our 2025 Donors

The Acid Maltase Deficiency Association (AMDA) is deeply grateful to the individuals, families, and organizations who contributed in 2025. Your generosity makes it possible for us to fund research and promote public awareness of Acid Maltase Deficiency, also known as Pompe disease.

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2024 Helen Walker Research Grant Recipient: Dr. Jaymin Upadhyay, Boston Children’s Hospital, Harvard Medical School

The winner of the 2024 AMDA Helen Walker Research Grant: Dr. Jaymin Upadhyay, Boston Children’s Hospital, Harvard Medical School Project Title: Implementation of At-Home Functional Biomarker Methods in Patients with Pompe Disease. For the second year in a row, the...

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2025 PCMA Pull for Pompe Fundraiser

The AMDA is excited to announce that the 14th Annual PCMA's Pull for Pompe will take place on Saturday, April 26, 2025 at the National Shooting Complex in San Antonio, Texas! The Pull for Pompe clay shooting event is designed for all ages and ability levels. Please...

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 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:

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THE AMDA

PO Box 700248

San Antonio, Texas 78270 USA