Jan 28, 2026 | PAST TWYPP SESSIONS
Session Details Title: Our Adaptations with Pompe Disease Date: Wednesday, February 11, 2026 Moderator:George Fox Session Summary:Living with Pompe disease often means finding new ways to adapt. In this Talking With Your Pompe Peeps (TWYPP) session, George, a dad of...
Jan 28, 2026 | PAST WEBINARS
Webinar Details Title: Making sense of research studies and registries Date: Thursday, February 19, 2026 Speakers:Karmen TrzupekRyan Colburn Webinar Overview:Have you heard about research studies and patient registries for Pompe disease? These studies are a critical...
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...
Dec 31, 2025 | PAST WEBINARS
Webinar Details Title: Grief Happens in Rare Disease: Let’s Talk About it Already Date: Thursday, January 15, 2026 Speaker:Lisa Keefauver, MSW Webinar Overview:Given 100% of us experience loss, multiple times in our lives, means that when we work with humans, we’re...
Dec 27, 2025 | PAST TWYPP SESSIONS
Session Details Title: Infusion Day Playbook: Stories, Tips, and Support Date: Thursday, January 29, 2026 Moderator:Alison Breitbarth, Grant’s Giants Session Summary:Infusions can feel overwhelming at first — and then, over time, they become part of life. In this...
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...
Oct 7, 2025 | PAST TWYPP SESSIONS, TALKING WITH YOUR POMPE PEEPS SESSIONS
Webinar Details Title: Spooky Soirée – Enjoying Halloween with PD for You and Your Kiddos Part 2 Date: Wednesday, October 22, 2025 Moderator:Andrea Faris Summary:Calling all Pompe Parents! Are you stuck thinking up costume ideas? Have you made an awesome one that you...
