Our Mission
The Acid Maltase Deficiency Association’s driving force lies in its efforts to advance research, improve care, and ensure early diagnosis for individuals and families affected by Pompe diseaseA rare genetic disease in which the body cannot properly break down glycogen, leading to buildup tha... More. Founded by the House family and guided by individuals living with Pompe diseaseA rare genetic disease in which the body cannot properly break down glycogen, leading to buildup tha... More, AMDA works through deep collaboration with global experts, industry, and policymakers to translate science into informed, compassionate support for the Pompe diseaseA rare genetic disease in which the body cannot properly break down glycogen, leading to buildup tha... More community.
What is Pompe disease?
Research
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Recent News
Honoring Advocacy: Celebrating Tiffany House and the RareVoice Awards
This week is Rare Disease Week, with...
Tiffany House Receives RareVoice Award for State Advocacy
We are honored to share this moment...
2026 PCMA Pull for Pompe Fundraiser
The AMDA is excited to announce that...
With Gratitude: Honoring Our 2025 Donors
The Acid Maltase Deficiency...
Tiffany House and Maryze Schoneveld van der Linde Honored at Sanofi’s Global Rare Impact Awards
At Sanofi’s inaugural Global Rare...
Grief and Rare Disease: Recognizing Loss and Building Grief Literacy
This past May, our hearts broke twice....
Recent Blog Posts
Move How You Can, Rest All You Need
Hey, all! Lucas Garrett, here. As we...
New Year’s Resolutions and Hobbies
For many, the end of the calendar year...
Burnout, Creativity, and Rest
For me, music can be one of the best...
Morgan’s Story: When Hope Met Hurricane Katrina
Editor's NoteIn the early years of...
Upcoming
Webinar
Immune Responses to AAV Gene Therapy
Title: Immune ResponsesThe body's natural defense system reacting to substances it sees as foreign, including treatments li... More to AAVA harmless virus commonly used as a delivery system in gene therapy to carry healthy genes into cell... More Gene TherapyA developing treatment that aims to fix, replace, or add genetic instructions. More: Challenges and Emerging Solutions
Date: Thursday, April 23, 2026
Time: 12 p.m. CST / 1 p.m. EST
Speaker:
Abigail Benkert, MD
Summary:
Immune responsesThe body's natural defense system reacting to substances it sees as foreign, including treatments li... More to AAVA harmless virus commonly used as a delivery system in gene therapy to carry healthy genes into cell... More gene therapyA developing treatment that aims to fix, replace, or add genetic instructions. More remain a major barrier to its access and effectiveness. This talk will highlight key immune challenges and emerging strategies to overcome them, including antibody-cleaving enzymes and novel capsids designed to evade pre-existing immunity.
Upcoming Talking With Your Pompe Peeps Session
Let’s Talk Diet — The Real Talk
Title: Let’s Talk Diet — The Real Talk
Date: Thursday, May 28, 2026
Time: 12 p.m. CST / 1 p.m. EST
Moderators:
AMDA Staff
Summary:
We all know eating well matters, but let’s be honest, actually sticking to a diet is hard. Life gets busy, cravings are real, and sometimes the foods we’re “supposed” to eat just don’t excite us. Living with Pompe adds another layer to that challenge, and nobody gets that better than your Pompe Peeps.
This session is all about having an open, honest conversation about why diet matters for our community, the everyday struggles of staying on track, and — the fun part — swapping recipes that actually taste good. We’ll kick things off with a few recipes to get the ideas flowing, but we really want to hear from you. What’s on your plate? What works? What doesn’t?
Get Involved
Your generous contribution will go a long way into improving the quality of life of Pompe Disease Patients worldwide. Donations go towards Pompe Disease Research.



