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...
Jan 3, 2026 | ARCHIVES, ARTICLES
New Year’s Resolutions and Hobbies For many, the end of the calendar year is often packed to the brim with holiday cheer, friends, and family, and there’s a sense of societal pressure that comes with the fanfare. As we stroll past the malaise that can come from...
Nov 29, 2025 | ARCHIVES, ARTICLES
Burnout, Creativity, and Rest For me, music can be one of the best things to experience in this world. Whether I am playing it or enjoying a song on repeat from one of my favorite artists, music can scratch an itch that most other things in my life cannot. That being...
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....
Oct 31, 2025 | ARCHIVES, ARTICLES
Editor’s NoteIn the early years of Pompe research, access to enzyme replacement therapy (ERT) was extremely limited. Long before FDA approval, a handful of families, physicians, and researchers worked tirelessly to secure treatment for patients diagnosed with...
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....
