Feb 5, 2026 | ARCHIVES, NEWS
We are honored to share this moment recognizing Tiffany House as a recipient of the RareVoice Award for State Advocacy. The award is presented by the EveryLife Foundation For Rare Diseases. This award is given to advocates whose voices have helped shape meaningful...
Feb 4, 2026 | ARCHIVES, NEWS
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...
Jan 4, 2026 | ARCHIVES, NEWS
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...
Nov 28, 2025 | ARCHIVES, NEWS
At Sanofi’s inaugural Global Rare Impact Awards ceremony held on November 14, 2025, in Vienna, three extraordinary leaders were recognized for their dedication to the rare disease community — including two remarkable advocates deeply connected to the Pompe community....
Sep 28, 2025 | ARCHIVES, NEWS
This past May, our hearts broke twice. Within just two weeks, the Pompe community said goodbye to two extraordinary advocates: Maryze Schoneveld van der Linde with the IPA, and our beloved Tiffany House with AMDA/IPA. These weren’t just losses. They were seismic...
Aug 30, 2025 | ARCHIVES, NEWS
A Milestone for Pompe Families This September September is Newborn Screening Awareness Month, a time to celebrate the programs that ensure every baby has a healthy start. This year, there’s especially good news for families affected by Pompe disease: on August...
Jul 30, 2025 | ARCHIVES, NEWS
A Legacy of Leadership, Love, and Lifesaving Work in the Pompe Community This August, the Acid Maltase Deficiency Association (AMDA) turns 30. Thirty years of progress. Thirty years of advocacy. Thirty years of showing up for patients and families around the world....
Jul 26, 2025 | ARCHIVES, NEWS
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...
Jul 18, 2025 | ARCHIVES, NEWS
Great news for the rare disease community—Texas has taken a big step by adding Pompe disease to its newborn screening panel! This major advancement in protecting the health of Texas infants also marks a meaningful moment for the Acid Maltase Deficiency Association...
Jun 14, 2025 | ARCHIVES, NEWS
A Heartfelt Thank You to Our Community During this time of profound loss, the outpouring of love, support, and kindness from our community has been truly overwhelming. The passing of our beloved president, Tiffany, has been deeply felt by all of us at the Acid Maltase...
