Sep 30, 2025 | PAST WEBINARS
Webinar Details Title: Overview of Breathing Muscle Weakness in Neuromuscular Disease (NMD) Date: Thursday, September 25, 2025 Speaker:Andrea Klein Webinar Overview:An introduction to the concepts of breathing and coughing muscle weakness, this presentation highlights...
Sep 28, 2025 | ARCHIVES, NEWS
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...
Aug 30, 2025 | ARCHIVES, NEWS
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...
Aug 13, 2025 | PAST TWYPP SESSIONS
Session Details Title: Back to School with Pompe: Real Talk for Real Parents Date: Wednesday, August 13, 2025 Moderator: Colleen Sackos Summary:This time of year is a stressful time for every parent, as kids all over the country start preparing to go back to school....
Jul 30, 2025 | ARCHIVES, NEWS
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....
Jul 26, 2025 | ARCHIVES, NEWS
The winner of the 2024 AMDA Helen Walker Research Grant: Dr. Jaymin Upadhyay, Boston Children’s Hospital, Harvard Medical School Project Title: Implementation of At-Home Functional BiomarkerA measurable sign in the body that helps track disease progression or...
Jul 18, 2025 | ARCHIVES, NEWS
Great news for the rare disease community—Texas has taken a big step by adding Pompe diseaseA rare genetic disease in which the body cannot properly break down glycogen, leading to buildup tha... More to its newborn screening panel! This major advancement in...
Jun 14, 2025 | ARCHIVES, NEWS
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...
Jun 9, 2025 | PAST WEBINARS
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...
Jun 8, 2025 | ARCHIVES, NEWS
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 diseaseA rare genetic disease in which the body cannot properly break down glycogen, leading to...
