disease and Becker disease nemaline myopathy paramyotonia congenita periodic paralysis, both hypokalemic and hyperkalemic polymyositis spinal and bulbar muscular atrophy spinal muscular atrophy The organization also targets muscle diseases due to deficiencies in carnitine and the following enzymes: phosphorylase acid maltase (Pompe's disease) phosphofructokinase debrancher enzyme (Forbes disease) carnitine palmityl transferase phosphoglycerate kinase phosphoglycerate mutase lactate dehydrogenase myoadenylate deaminase Legislation The MDA supported the Newborn Screening Saves Lives Reauthorization Act of 2013 (H.R. 1281; 113th Congress), a bill that would amend the Public Health Service Act to reauthorize grant programs and other initiatives to promote expanded screening of newborns and children for heritable disorders. The MDA argued that "many of the drug therapies currently under development for MDA's community will be of most benefit if administered either presymptomatically or early in the progression of the disease. Thus, for some of the diseases in MDA's program, the availability of a newborn screening program at the time of treatment availability presents the best opportunity for impacting optimal and potential lifesaving treatment outcomes." The MDA supported the Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education Amendments of 2013 (H.R. 594; 113th Congress), a bill that would amend the Public Health Service Act to revise the muscular dystrophy research program of the National Institutes of Health (NIH). MDA argued that "a great deal of work still needs to be done, and increased federal support is needed to ensure that researchers can continue making progress toward finding a cure." Charity assessments According to a Better Business Bureau summary released in September 2015, the Organization: oversees a network of 200 hospital-affiliated clinics providing diagnosis and treatment, including more than 40 MDA/ALS centers for Lou Gehrig's disease offers diagnostic and follow-up care, support groups, summer camps for children (aged 6–17), and assistance to repairs medical equipment funds research for disease treatments and cures has a paid staff of 812 people received $145.3 million donated because of fund-raising activities, 15% of which was spent on the fund-raising activities. Charity Navigator, which is the largest independent evaluator of charities, gives MDA one out of four stars based on Financial, Accountability, and Transparency Performance Metrics. Criticism MDA and Lewis were once criticized by disability rights activists for their tendency to paint disabled people as, these advocates say, "pitiable victims who want and need nothing more than a big charity to take care of or cure them." References External