As we enter a new year, the Acid Maltase Deficiency Association (AMDA) wants to thank you for your unwavering support and dedication. Together, we have navigated through challenges and made significant strides for the Pompe community. Your support fuels our commitment to provide hope and comfort to patients and families affected by Pompe Disease.

Exciting advancements continue to evolve within the Pompe community and the AMDA, through its involvement with the International Pompe Association (IPA), remains committed to monitoring these advances and cultivating relationships with all parties involved in the development of treatments or interventions for Pompe. In addition, we work closely with the medical/scientific community to improve our mutual understanding of Pompe Disease and the unmet needs of the Pompe community.

The AMDA was established in 1995 to assist in funding research and to promote public awareness of Pompe Disease. This year marks the 30th Anniversary of the founding of the AMDA. We are proud of our journey so far, and eager to continue working for Pompe patients and their families; watch our video, “The History of the AMDA: 1995 – 2024”:

It is incredibly rare for a rare disease to have a treatment, let alone treatment options. Not only are there currently three commercially approved treatments in the U.S., but there are multiple new approaches in clinical trials and pre-clinical research.

But we are not ready to stop looking for better choices, better treatment management, and a better understanding of Pompe. And we are fortunate to be surrounded by clinicians and researchers who feel the same.

The AMDA remains committed to providing the most accurate and current news on Pompe Disease and to listen to our community on what they need and want to know. You are not alone; we are here to help. The AMDA is POMPE; Passionate On Matters Pompe Everyday!

Here’s to a fantastic year ahead!

Tiffany House,

AMDA President

To download a pdf version of this letter, click here.