Hi All, The AMDA has been working with Pfizer on supporting some proposed legislation in California that is intended to streamline the process to get prior authorization of medication.  The proposed Bill is SB 866. This Bill could be taken up by the House and Senate...

Genzyme would like to provide an update to the US Pompe community regarding the transition to commercial LumizymeTM (alglucosidase alfaA form of enzyme replacement therapy used to treat Pompe disease by providing a lab-made version of the GAA enzyme.) from the ATAP (Alglucosidase Alfa Temporary Access Program) in the United States. As a reminder, Lumizyme was approved by the US...

The AMDA is excited to announce a research grant opportunity for applicants who are involved in Pompe DiseaseA rare genetic disease in which the body cannot properly break down glycogen, leading to buildup that damages muscles and can affect breathing and, in some cases, the heart. research. This grant opportunity was made possible by a fundraiser aimed at promoting research into Pompe Disease. If you are interested in this opportunity,...

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 private fundraiser aimed at promoting research into Pompe Disease. If you are interested in this...

On June 6, 2011 the AMDA will host a webinar on Respiratory Muscle Strength Training in Pompe disease at 12:00pm (ET); 11:00am (CT); 10:00am (MT); 9:00am (PT). The Guest Speaker is:  Harrison N. Jones, PhD, BRS-S, CCC-SLP, Assistant Professor, Department of Surgery,...

PCMA of Texas invites you to enjoy a day of family fun benefitting Acid Maltase Deficiency, also known as Pompe Disease.  This event is designed for all ages and ability levels. Proceeds from the event will go to the Acid Maltase Deficiency Association (AMDA). For...

Cincinnati Children’s Hospital is conducting a study about the speech, language and swallowing problems in infants and children with Pompe disease.  The study involves a survey which can be completed online that asks a variety of questions about the speech, language...

The AMDA is hosting yet another webinar for the Pompe community on Feb 3, 2011. Title: Genzyme’s Next Generation Pompe Treatment: Clinical Development Overview Date:  Thursday, February 3, 2011 Time:  8:00 pm (ET); 7pm (CT); 6pm (MT); 5pm (PT) Guest Speakers: Edward...

CAMBRIDGE, Mass.—Genzyme Corp. today announced that it will build an additional manufacturing plant in Geel, Belgium, to support the long-term growth of Myozyme® and Lumizyme® for Pompe disease. The company held a ceremony today in Geel to mark the start of...

Jan. 19, 2011—BioMarin Pharmaceutical Inc. (Nasdaq: BMRN) announced today that it has initiated a Phase 1/2 trial for BMN 701, a novel fusion protein of insulin-like growth factor 2 and acid alpha glucosidase (IGF2-GAA) in development for the treatment of Pompe...

In 2010 the AMDA solicited grant applications from researchers around the world.  After careful consideration and consultation with our Scientific Advisory Board, Dr. Amalfitano of Michigan State University was selected as the recipient of the First Annual AMDA...

Dr. Maryam Banikazemi of Columbia University is hosting a meeting for Pompe patients on July 16, 2010 in New York, New York. The expert panel of speakers will include Drs. J. Bach, A. Slonim, T. Goldberg, and M. Banikazemi. For more details, please download meeting...

On May 24, 2010 the FDA approved Genzyme’s Lumizyme for the treatment of patients with Pompe disease who are over 8 years of age and do not have evidence of cardiac hypertrophy. For more information on the approval and how to access treatment, please read the Pompe...

CAMBRIDGE, Mass. – Genzyme Corporation (Nasdaq: GENZ) announced today that the FDA has granted U.S. marketing approval for LumizymeTM (alglucosidase alfa), produced at the 4000 liter (L) bioreactor scale at its manufacturing facility in Geel, Belgium. Lumizyme is the...