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...
2024 PCMA’s Pull for Pompe Photo Gallery
On Saturday, April 27, 2024, the PCMA (Precast Concrete Manufacturers Association) held it’s annual Pull for Pompe fundraiser at the National Shooting Complex in San Antonio, TX. The Pull for Pompe clay shooting event was a day of family fun designed for all ages and...
2024 Helen Walker Research Grant For Pompe Disease Now Accepting Applications
The AMDA is excited to announce a research grant opportunity for applicants who are involved in Pompe Disease research. This grant opportunity was made possible by the 2024 Pull for Pompe, a private fundraiser held by the Precast Manufacturer’s Association of Texas...
2024 AMDA/IPA International Conference Wrap-Up
We would like that thank you all for helping to make our 2024 AMDA/IPA Conference a HUGE success! With upwards of 225 in person attendees, and 80+ virtual attendees from over 13 countries, this was our largest, most successful conference yet! The conference recordings...
2024 AMDA/IPA International Pompe Patient and Scientific Conference Photo Gallery: May 5, 2024 Day 3 Photos
May 5, 2024: Day 3 - Conference Photos The final day of the 2024 AMDA/IPA International Pompe Patient & Scientific Conference brought more presentations from industry and a look at the future of Pompe disease treatments and initiatives. It was incredible seeing...
2024 AMDA/IPA International Pompe Patient and Scientific Conference Photo Gallery: May 4, 2024 Day 2 Photos Part 1
May 4, 2024: Day 2 - Conference Photos: Part 1 Day 2 was a full day of sessions where we saw excellent presentations from researchers, doctors, and patients. [gallery type="thumbnails" link="file" columns="9"...
2024 AMDA/IPA International Pompe Patient and Scientific Conference Photo Gallery: May 4, 2024 Day 2 Photos Part 2
May 4, 2024: Day 2 - Conference Photos: Part 2 [gallery type="thumbnails" link="file" columns="9"...
2024 AMDA/IPA International Pompe Patient and Scientific Conference Photo Gallery: May 3, 2024 Rodeo and Dinner Part 2
May 3, 2024: Day 1 - Welcome Dinner & Rodeo: Part 2 [gallery type="thumbnails" columns="9" link="file"...
2024 AMDA/IPA International Pompe Patient and Scientific Conference Photo Gallery: May 3, 2024 Rodeo and Dinner Part 1
May 3, 2024: Day 1 - Welcome Dinner & Rodeo: Part 1 After the workshops, everyone was chartered over to Pedrotti's Ranch for the Welcome Dinner and a good old fashioned Texas Rodeo!!! [gallery type="thumbnails" columns="9" link="file"...
2024 AMDA/IPA International Pompe Patient and Scientific Conference Photo Gallery: May 3, 2024 – Day 1 Conference
May 3, 2024 - Day 1 - Conference Photos On May 3, 2024, patients, their family members, care givers, researchers, and doctors gathered at the Holiday Inn - Riverwalk for the 2024 AMDA/IPA International Pompe Patient & Scientific Conference. Day 1 was check-in and...
Essential Update: New Treatment Approaches for Late-Onset Pompe Disease
The AMDA is partnering with Medlive to bring this exciting program to HCPs in the Pompe community. Join leading experts Dr. Tahseen Mozaffar and Dr. Barbara Burton as they discuss late-onset Pompe disease (LOPD). Hear the latest advancements, including newly approved...
2023 Helen Walker Grant Recipient
Project title: Autophagy control of glycogen in skeletal muscle This year, the AMDA was fortunate to receive 13 grant applications focusing on both clinical research and basic science. It has been a challenge to select one. Dr. Wyant was chosen because he has embarked...
Join us for the first “Talking With Your Pompe Peeps” session on August 16, 2024!
We are excited to announce that the topic of our first "Talking With Your Pompe Peeps" session is "The Elementary School Experience: Building Success for IOPD/LOPD Children Through Collaboration and Partnership"! Join us August 16, 2024 at 1 PM CT for an open forum...
PEARL Trial-PrEnAtal enzyme Replacement for Lysosomal storage diseases
University of California - San Francisco (UCSF) is excited to announce the rebranding of their phase 1 clinical trail of In Utero Enzyme Replacement Therapy as the PEARL Trial-PrEnAtan enzyme Rreplacement for Llysosomal storage diseases. "We have rebranded our...
The role of patient advocacy organizations in shaping medical research: the Pompe model
By: IPA posted on: May 27, 2019 The IPA has authored an article titled “The role of patient advocacy organizations in shaping medical research: the Pompe model,” and we are excited to announce that it has been accepted for publication. The article focuses on...
2024 PCMA Pull for Pompe Fundraiser
The AMDA is excited to announce that the 13th Annual PCMA’s Pull for Pompe will take place on Saturday, April 27, 2024 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...
2023 Helen Walker Research Grant For Pompe Disease Now Accepting Applications
The AMDA is excited to announce a research grant opportunity for applicants who are involved in Pompe Disease research. This grant opportunity was made possible by the 2023 Pull for Pompe, a private fundraiser held by the Precast Manufacturer’s Association of Texas...
Amicus Therapeutics Announces FDA Approval and Launch of New Treatment for Pompe Disease
PHILADELPHIA, Sept. 28, 2023 (GLOBE NEWSWIRE) -- Amicus Therapeutics (Nasdaq: FOLD) today announced that the U.S. Food and Drug Administration (FDA) has approved Pombiliti™ (cipaglucosidase alfa-atga) + Opfolda™ (miglustat) 65mg capsules. This two-component therapy is...
CALL to participate in IPA Project Every Move Counts
At International Pompe Day the International Pompe Association kicked off the Every Move Counts project. This project focuses on raising awareness of the importance of movement. We all have different abilities and levels of disability, but the important thing to...