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 Time: 9 AM CST / 10 AM EST Moderator: Colleen Sackos Summary:This time of year is a stressful time for every parent, as kids all over the country start...
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 Biomarker Methods in Patients with Pompe Disease. For the second year in a row, the...
