Muscular Dystrophy Association
Muscular Dystrophy Association (MDA) is a nonprofit and voluntary health agency that was established to find cure for muscular dystrophy, ALS and other related diseases. The agency is composed of dedicated scientists and citizens who work together to fight muscular dystrophy and other neuromuscular diseases that affect more than a million of Americans. There are actually more than 200 local Muscular Dystrophy Associations offices across the country. These offices offer their assistance to those who are suffering from neuromuscular diseases that are included in the program of the association.
MDA is now one of the leading voluntary health associations that support research and offer medical help and other related assistances to the public. The organization funds various worldwide researches on the disease and other neuromuscular diseases. It also provides other programs that cover education and advocacy. Moreover, it offers service and assistance, ranging from actual medical assistance, such as diagnosis, to equipment assistance repairs. The programs and research are generally funded by donors, both individual and private institutions and organizations, as well as other non-profit organizations that support the MDA. In short, the MDA fights neuromuscular diseases by way of research, offering comprehensive medical and medical related programs and education of professionals and the public.
The success and assistance of MDA is highly notable and significant to individuals as well as to the general health and well being of the people across the globe who are affected by neurological diseases. For all its efforts and contributions the American Medical Association awarded MDA the Lifetime Achievement Award. It is the first nonprofit entity that has received such commendation. The American Institute of Philanthropy has designated the MDA a "Top-Rated Charity". Across the nation, all the offices of the MDA comply with state and national policies and regulations. This includes all its fundraising activities as well as all its programs.
Muscular Dystrophy Association was established for the purpose of fighting neuromuscular diseases. Although it is called Muscular Dystrophy Association, there is actually no single disease of that name since muscular dystrophy refers to a group of genetic neuromuscular disorders.
As such, the MDA aims to defeat several diseases. Included therefore in the research and programs of the MDA are the following diseases:
- muscular dystrophies, which includes myotonic dystrophy, duchenne muscular dystrophy, becker muscular dystrophy, Emery-Dreifuss Muscular Dystrophy (EDMD), Limb-Girdle Muscular Dystrophy (LGMD), Facioscapulohumeral Muscular Dystrophy (FSH or FSHD), Myotonic Dystrophy (MMD), Oculopharyngeal Muscular Dystrophy (OPMD), Distal Muscular Dystrophy (DD) (Miyoshi) and Congenital Muscular Dystrophy (CMD);
- metabolic diseases of the muscle, which includes Phosphorylase Deficiency (MPD or PYGM), Acid Maltase Deficiency (AMD), Phosphofructokinase Deficiency, Debrancher Enzyme Deficiency (DBD), Mitochondrial Myopathy (MITO), Carnitine Deficiency (CD), Carnitine Palmityl Transferase Deficiency (CPT), Phosphoglycerate Kinase Deficiency, Phosphoglycerate Mutase Deficiency, Lactate Dehydrogenase Deficiency and Myoadenylate Deaminase Deficiency;
- inflammatory Myophaties, which includes dermatomyositis, polymyositis and inclusion body myositis; myopathies due to endocrine abnormalities, which includes Hyperthyroid Myopathy (HYPTM), Hypothyroid Myopathy (HYPOTM); motor neuron diseases, which includes Amyotrophic Lateral Sclerosis (ALS), Spinal Muscular Atrophy Type 1, 2 and 3 and Spinal Bulbar Muscular Atrophy (SBMA);
- diseases of peripheral nerve, which includes Charcot-Marie-Tooth Disease (CMT), Friedreich's Ataxia (FA) and Dejerine-Sottas Disease (DS);
- diseases of the neuromuscular junction, which includes Myasthenia Gravis (MG), Lambert-Eaton Syndrome (LES) and Congenital Myasthenic Syndrome (CMS);
- and other myopathies, specifically Myotonia Congenita (MC), Paramyotonia Congenita (PC), Central Core Disease (CCD) Nemaline Myopathy (NM), Myotubular Myopathy/Centronuclear Myopathy (MTM or CNM) and Periodic Paralysis (PP).
MDA awards grants to scientists, doctors, educational institutions, hospitals and other institutions and companies for the research of the above stated diseases. At the same time it offers services programs for individuals with the diseases and their families, medical help and regular summer camps. Education and advocacy are also part of the program that is designed to find a cure for the diseases.
Muscular Dystrophy Association started as far back as the 1950s. At that time there was very little information available on muscular dystrophy, much less efforts on fighting the disease. It was then that a group of individuals affected by muscular dystrophy and parents of children with the disease decided to create the MDA. They believed that there are no incurable diseases. The problem is in finding a cure and treatment for them. This became their main philosophy and has been adapted by the MDA over the years. Over the years, the agency has gained more and more members and supporters that it soon became a nationwide agency. It was originally called Muscular Dystrophy Associations of American but was renamed only as Muscular Dystrophy Association in the 70s.
The MDA gained more supporters and members because of its nationwide telethon. It debuted in 1966 Labor Day Weekend in a New York television station and was hosted by Jerry Lewis. Lewis was its national chairman since it was organized in 1950. The telethon was successful in gaining the support of the public that it was able to raise more than one million dollars in its debut. The telethon is a very important part of the success of the MDA since its debut in 1966. In 1998 it was shown across the globe through the internet. It was the first of its type of show to be broadcasted worldwide. The fundraising success of the telethon is mainly because of Lewis' "one dollar more" goal. Every year, the show encourages everyone to beat the previous year's donation by at least one dollar more than the last year's total. Almost every year the donations are higher and as of 2010 the total was $58.9 million. Due to the support of the public and other private organizations and entities, the MDA has about 230 affiliated hospitals and clinics that provide diagnosis and treatment to individuals with muscular dystrophy.
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