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....
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...
