Apr 15, 2025 | PAST TWYPP SESSIONS
Session Details Title: The Good, The Bad and The Ugly: How to Approach Unsolicited Advice and Unexpected Actions That Made Your Day Date: Tuesday, April 15, 2025 Moderator:Tiffany House Moderator Biography Tiffany House President, Acid Maltase Deficiency Association;...
Mar 25, 2025 | PAST WEBINARS
Webinar Details Title: The Pompe Survey: Past Insights and Future Goals Date: Tuesday, March 25, 2025 Speakers:Lauren Dobischok, MScMichelle Kruijshaar, PhD Webinar Overview:Launched in 2002, the IPA/Erasmus MC Pompe Survey collects information on the impacts of Pompe...
Mar 7, 2025 | PAST TWYPP SESSIONS
Session Details Title: Have You Ever Considered Getting a Service Dog? Date: Friday, March 7, 2025 Moderator:Margaret Koehler Summary:Join me for this Talking With Your Pompe Peeps session, where we’ll dive into everything you need to know about Service Dogs! Deciding...
Feb 26, 2025 | PAST WEBINARS
Webinar Details Title: Evolving our understanding of Pompe Disease – data driven insights Date: Wednesday, February 26, 2025 Speaker:Ryan Colburn Webinar Overview:An overview of how NBS enabled significant updates to Pompe epidemiology (Prevalence, etc), and how...
Feb 19, 2025 | PAST TWYPP SESSIONS
Session Details Title: Kaizen Your New Year’s Resolutions: Small Steps, Big Success! Date: Wednesday, February 19, 2025 Moderator:Matt Zimmerman Summary:“A new year, a new you.” Studies show about 80 percent of new year’s resolutions are abandoned by the month of...
Jan 28, 2025 | ARCHIVES, NEWS
The AMDA is excited to announce that the 14th Annual PCMA’s Pull for Pompe will take place on Saturday, April 26, 2025 at the National Shooting Complex in San Antonio, Texas! The Pull for Pompe clay shooting event is designed for all ages and ability levels....
Jan 14, 2025 | ARCHIVES, NEWS
As we enter a new year, the Acid Maltase Deficiency Association (AMDA) wants to thank you for your unwavering support and dedication. Together, we have navigated through challenges and made significant strides for the Pompe community. Your support fuels our commitment...
Jan 13, 2025 | PAST WEBINARS
Webinar Details Title: The ABCs of Pompe Disease Date: Monday, January 13, 2025 Speaker:Erin Huggins, MS, CGC Webinar Overview:Are you looking for information on Pompe disease or trying to navigate a new diagnosis? Overwhelmed by the amount of information online and...
Dec 29, 2024 | ARCHIVES, NEWS
On Saturday, April 27, 2024, the PCMA (Precast Concrete Manufacturers Association) held it’s annual Pull for Pompe fundraiser at the National Shooting Complex in San Antonio, TX. The Pull for Pompe clay shooting event was a day of family fun designed for all ages and...
