October 1, 2025
Check Back Soon for Upcoming Webinars
We don’t have a webinar scheduled at the moment, but more exciting sessions are on the way! Check back soon
September 30, 2025
Overview of Breathing Muscle Weakness in Neuromuscular Disease (NMD)
Webinar Details Title: Overview of Breathing Muscle WeaknessA loss of strength that can affect movement, posture, and sometimes breathing. More in Neuromuscular Disease (NMD) Date: Thursday, September 25, 2025 Speaker:Andrea Klein Webinar
September 28, 2025
Grief and Rare Disease: Recognizing Loss and Building Grief Literacy
This past May, our hearts broke twice. Within just two weeks, the Pompe community said goodbye to two extraordinary advocates:
August 30, 2025
Closing the Gaps: Pompe Disease Newborn Screening and the Importance of RUSP Alignment
A Milestone for Pompe Families This September September is Newborn Screening Awareness Month, a time to celebrate the programs that
A Legacy of Leadership, Love, and Lifesaving Work in the Pompe Community This August, the Acid Maltase Deficiency Association (AMDA)
July 26, 2025
2024 Helen Walker Research Grant Recipient: Dr. Jaymin Upadhyay, Boston Children’s Hospital, Harvard Medical School
The winner of the 2024 AMDA Helen Walker Research Grant: Dr. Jaymin Upadhyay, Boston Children’s Hospital, Harvard Medical School Project
July 18, 2025
Texas Adds Pompe Disease to Newborn Screening Panel—A Historic Milestone Coinciding with the AMDA’s 30th Anniversary
Great news for the rare disease community—Texas has taken a big step by adding Pompe diseaseA rare genetic disease in
June 14, 2025
A Heartfelt Thank You to Our Community
A Heartfelt Thank You to Our Community During this time of profound loss, the outpouring of love, support, and kindness
Webinar Details Title: The Role of Genetic Counselors on the Pompe DiseaseA rare genetic disease in which the body cannot properly break down glycogen, leading to buildup tha... More Care Team Date: Monday, June 9, 2025 Speaker:Erin
Tiffany Laurel House January 22, 1983 – May 25, 2025 Tiffany L. House, 42, of San Antonio, Texas, passed away







