Webinar Details Title: The Role of Genetic Counselors on the Pompe Disease Care Team Date: Monday, June 9, 2025 Speaker:Erin Huggins, MS, CGC Webinar Overview:This webinar focuses on a unique type of clinician: the genetic counselor. Genetic counselors are specially...
Tiffany Laurel House January 22, 1983 – May 25, 2025 Tiffany L. House, 42, of San Antonio, Texas, passed away on May 25, 2025, after a courageous battle with Pompe disease, a rare and progressive muscle disease. One of the first and most severe symptoms she...
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;...
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...
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...
Updated—March 2025 Hi everyone, my name is Dwayne; I am 57 years old. I was diagnosed with Late Onset Pompe disease (LOPD) in November 2018 when I was 50 years old. I live in Southern California in the City of Irvine with my wife and mother-in-law. I am a father to...
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...
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....
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...
