This month marks the 36th anniversary since the Americans with Disabilities Act (ADA) was signed into law by President George H.W. Bush. At its core, the civil rights law was enacted to help prevent discrimination that folks with disabilities may face. It is meant to...
Move How You Can, Rest All You Need Hey, all! Lucas Garrett, here. As we head into April, I wanted to take a minute to jot down a few ideas on staying healthy — physically and mentally. As many in the Pompe community may already be keenly aware, well-regulated habits...
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...
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...
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...
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...
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...
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....
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...
