May 1, 2026 | UPCOMING TWYPP SESSIONS
Webinar Details Title: Let’s Talk Diet — The Real Talk Date: Thursday, May 28, 2026 Time: 12 p.m. CST / 1 p.m. EST Moderator:The AMDA staff Webinar Overview:We all know eating well matters, but let’s be honest, actually sticking to a diet is hard. Life...
Apr 2, 2026 | ARCHIVES, ARTICLES
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...
Mar 30, 2026 | UPCOMING WEBINARS
Webinar Details Title: Immune Responses to AAV Gene Therapy: Challenges and Emerging Solutions Date: Thursday, April 23, 2026 Time: 12 p.m. CST / 1 p.m. EST Speaker:Abigail Benkert, MD Webinar Overview:Immune responses to AAV gene therapy remain a major barrier to its...
Mar 25, 2026 | UPCOMING TWYPP SESSIONS
Session Details Title: Home Infusions Date: Wednesday, April 29, 2026 Time: 7 p.m. CST / 8 p.m. EST Moderator:Ashley Lloyd, BSN, RN Summary:Home infusions can feel overwhelming at first. Join Ashley Lloyd, BSN, RN, for a practical discussion on how to prepare, what to...
Mar 1, 2026 | PAST TWYPP SESSIONS
A Personal Look at the Benefits of Having a Portacath Session Details Title: A Personal Look at the Benefits of Having a Portacath Date: Thursday, March 19, 2026 Moderator:Lucas Garrett Summary:The concept of IV enzyme replacement therapies is not foreign to the Pompe...
Feb 24, 2026 | ARCHIVES, NEWS
Honoring Advocacy: Celebrating Tiffany House and the RareVoice Awards This week is Rare Disease Week, with events and activities taking place worldwide to bring awareness to rare diseases and honor the community. One such event is “Rare Disease Week on Capitol...
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 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 Time: 7 p.m. CST / 8 p.m. EST Speakers:Karmen TrzupekRyan Colburn Webinar Overview:Have you heard about research studies and patient registries for Pompe disease? ...
