TOP NEWS
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...
OTHER NEWS
Inspired By Pompe Cookbooks available for Sale!
The AMDA is excited to announce that “Inspired by Pompe—High Protein, Reduced Carb Cooking” Cookbooks are availble for sale. This cookbook was written by fellow Pompe patient Sharon Krueger, and all proceeds will go towards the AMDA. Click here to view the Preface and...
BioMarin Announces Interim Analysis of INSPIRE Clinical Trial in Pompe Disease
Reveglucosidase Alfa Trends Positive in Respiratory Muscle Strength and Endurance Endpoints in Patients Previously Treated With Enzyme Replacement Therapy SAN RAFAEL, Calif., Jan. 11, 2016 (GLOBE NEWSWIRE)—BioMarin Pharmaceutical Inc. (Nasdaq:BMRN) today announced...
2016 PCMA of Texas Pull for Pompe!
The AMDA is excited to announce that the 2016 PCMA of Texas Pull for Pompe will take place on Saturday, April 16 at the National Shooting Complex in San Antonio, Texas! This is the 6th Annual Pull for Pompe hosted by the PCMA of Texas. Since it’s launch in 2011, over...
Amicus Therapeutics Commences Phase 1/2 Study of Novel ERT for Treatment of Pompe Disease
CRANBURY, N.J., Dec. 22, 2015 (GLOBE NEWSWIRE)—Amicus Therapeutics (Nasdaq:FOLD), a biopharmaceutical company at the forefront of rare and orphan diseases, today announced that its investigational new drug (IND) application, submitted to U.S. Food and Drug...
2015 Helen Walker Research Grant Awarded
The sixth annual AMDA Research Grant (the 2015 Helen Walker Research Grant) was awarded to Dr. Rosa Puertollano and Dr. Nina Raben for their Project: “Curcumin: Can it promote cellular clearance in Pompe disease?.” The aim of this project is to test the possibility of...
2015 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 a fundraiser hosted by the Precast Manufacturer’s Association of Texas (PCMA of Texas) on April 18,...
Registration now open for 2015 AMDA International Pompe Patient and Scientific Conference
We are excited to announce that Registration is now open for the 2015 AMDA International Pompe Patient and Scientific Conference! The Conference will be held in San Antonio, Texas from October 30-November 1, 2015. In order to assist with Conference planning, we ask...
Genzyme’s Pompe Community Program Update for International Pompe Day
Please click here to read the press release.
Pompe Program to Air on Lifetime’s Access Health on April 15, 2015
The AMDA is excited to announce that in collaboration with Genzyme Corporation, AMDA President and IPA Chair, Tiffany House, participated in a segment on Pompe Disease awareness for Access Health on Lifetime Television! This program will air on April 15th, 2015 in...
Pompe Disease to be Added to Recommended Newborn Screening Panel in the United States
The AMDA is very excited to announce that the U.S. Pompe Community is one step closer to having newborn screening become a reality for Pompe disease! On March 2, 2015, the Secretary of Health and Human Services, Sylvia Burwell, accepted the recommendation to add Pompe...