alexa Acid Maltase Deficiency Association (AMDA)

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Acid Maltase Deficiency Association (AMDA)

The Acid Maltase Deficiency Association was founded in 1995 to assist in funding research and to encourage public awareness of Pompe disease. This disease is one of a family of 49 rare genetic disorders known as Lysosomal Storage Diseases/LSDs. Pompe disease is also called as Acid Maltase Deficiency or Glycogen Storage Disease type II. It affects an expected 5,000-10,000 people in the developed world. The founders of the organization became dedicated to finding solutions to their questions after their daughter was analyzed with Pompe disease at the age of twelve. Although she had many medical complications starting in early childhood, it was very difficult to find a proper diagnosis for her symptoms. This is frequently the case with delayed onset patients whose symptoms and progression vary. They were eventually led in the right path by a family member, a pediatrician at the Mayo Clinic in Rochester, Minnesota. Following extensive testing & a muscle biopsy, she was detected with Pompe disease. AMDA formed a scientific board to oversee funding of grants to encourage clinical research for enzyme & gene replacement therapy. AMDA has funded or procured funds totaling over $4,900,000 for projects focused toward the treatment and cure of Acid Maltase Deficiency. The AMDA is excited to declare a research grant opportunity for applicants who are involved in Pompe Disease research. This opportunity of the grant was made possible by the 2016 for Pompe, a private fundraiser held by the Precast Manufacturer’s Association of Texas (PCMA of Texas) aimed at encouraging research into Pompe Disease.  This was the sixth annual Pull for Pompe, and the AMDA would like to thank everyone who contributed and made this Grant possible. The Grant is also made possible by the generous contributions of the Pompe Community.

Since 2013, the AMDA’s Research Grant has been in memory of Helen Walker, a Pompe patient, advocate & friend who devoted her life to advocating for Pompe patients in Australia, New Zealand, and around the world.

 

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