2023 PCMA Pull for Pompe Fundraiser

Feb 8, 2023 | NEWS, ARCHIVES

The AMDA is excited to announce that the 12th Annual PCMA’s Pull for Pompe will take place on Saturday, April 29, 2023 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...
Insurance 101 Webinar

Insurance 101 Webinar

Dec 13, 2022 | PAST WEBINARS

Webinar Details Title: Insurance 101: Learning the Basics Date: Tuesday, December 13, 2022 Speaker:Amy DeStefanis, LCSW, CCM Webinar Overview:Insurance 101 will guide the participants through a discussion of the main types of health insurance coverage, types of health...

An Open Letter to the Pompe Community

Nov 1, 2022 | NEWS

On October 28, Amicus Therapeutics issued a press release with an update on the progress of our Pompe program as we received information from the US Food & Drug Administration (FDA) on the regulatory status of our next-generation therapy for the treatment of...

International Survey on Pompe Disease and Covid-19

Sep 19, 2022 | NEWS

Over the last 2 years the COVID-19 pandemic has had wide reaching effects on people all over the world. To better understand the impact of the Covid 19 Pandemic on the worldwide Pompe community, the International Pompe Association and the Erasmus MC are undertaking a...
In Utero ERT Webinar

In Utero ERT Webinar

Sep 16, 2022 | PAST WEBINARS

Webinar Details Title: In Utero Enzyme Replacement Therapy for Lysosomal Storage Diseases Date: Friday, September 16, 2022 Speaker:Jeniffer L. Cohen, MD, Assistant Professor of Pediatrics at Duke University Webinar Overview:Dr. Cohen will provide an overview of the...

2021 Helen Walker Grant for Pompe Disease Winner Announcement

Sep 6, 2022 | NEWS

The AMDA is excited to announce that the 2021 Helen Walker Grant for Pompe DiseaseA rare genetic disease in which the body cannot properly break down glycogen, leading to buildup tha... More was awarded to Dr. Peter Meinke and Dr. Benedikt Schoser for their Project...
Aquatic Physical Therapy Webinar

Aquatic Physical Therapy Webinar

Aug 26, 2022 | PAST WEBINARS

Webinar Details Title: Aquatic Exercise: Applications for Pompe Disease Date: Friday, August 26, 2022 Speaker:Dr. Kendra Lucas, PT, DPT, Aquatic Physical Therapist at Kettering Health, Ohio Webinar Overview:The unique properties of water provide surprising benefits...

Astellas Gene Therapies Press Release – Clinical Trial Update

Jun 28, 2022 | NEWS

“On June 26, 2022, Astellas Pharma, Inc. (“Astellas”) issued a press release announcing that the U.S. Food and Drug Administration (FDA) has placed a clinical hold on the FORTIS Phase 1/2 clinical trialA research study that tests new treatments or...