TOP NEWS
A Heartfelt Thank You to the Krueger Family
The Acid Maltase Deficiency Association is deeply grateful to the Krueger family for their remarkable and generous donation to our organization. Their gift is a powerful testament to their compassion for all those affected by Pompe diseaseA rare genetic disease in which the body cannot properly break down glycogen, leading to buildup tha... More and their commitment to...
OTHER NEWS
Honoring Advocacy: Celebrating Tiffany House and the RareVoice Awards
This week is Rare Disease Week, with events and activities taking place worldwide to bring awareness to rare diseases and honor the community. One such event is "Rare Disease Week on Capitol Hill," where Tiffany House is being featured as a RareVoice Awardee for State...
Tiffany House Receives RareVoice Award for State Advocacy
We are honored to share this moment recognizing Tiffany House as a recipient of the RareVoice Award for State Advocacy. The award is presented by the EveryLife Foundation For Rare Diseases.This award is given to advocates whose voices have helped shape meaningful...
2026 PCMA Pull for Pompe Fundraiser
The AMDA is excited to announce that the 15th Annual PCMA's Pull for Pompe fundraiser will take place on Saturday, May 2, 2026, from 8 a.m. to 2 p.m. CST at the National Shooting Complex in San Antonio, Texas! The Pull for Pompe clay shooting event is designed for all...
With Gratitude: Honoring Our 2025 Donors
The Acid Maltase Deficiency Association (AMDA) is deeply grateful to the individuals, families, and organizations who contributed in 2025. Your generosity makes it possible for us to fund research and promote public awareness of Acid Maltase Deficiency, also known as Pompe diseaseA rare genetic disease in which the body cannot properly break down glycogen, leading to buildup tha... More.
Tiffany House and Maryze Schoneveld van der Linde Honored at Sanofi’s Global Rare Impact Awards
Sanofi’s inaugural Global Rare Impact Awards recognized three pioneers in rare disease advocacy, including the AMDA’s late president Tiffany House and IPA board member Maryze Schoneveld van der Linde.
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 Title: Implementation of At-Home Functional BiomarkerA measurable sign in the body that helps track disease progression or treatment response. More Methods in Patients with Pompe DiseaseA rare genetic disease in which the body cannot properly break down glycogen, leading to buildup tha... More. For the second year in a row, the...
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 which the body cannot properly break down glycogen, leading to buildup tha... More to its newborn screening panel! This major advancement in protecting the health of Texas infants also marks a meaningful moment for the Acid Maltase Deficiency Association...
Tiffany Laurel House (1983-2025): A Life of Purpose and Passion
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 buildup tha... More, a rare and progressive muscle disease. One of the first and most severe symptoms she...
2025 PCMA Pull for Pompe Fundraiser
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. Please...
2025 New Year Letter From AMDA President – Tiffany House
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...
Acid Maltase Deficiency Association
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THE AMDA
PO Box 700248
San Antonio, Texas 78270 USA