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Through representation in matters of public policy and research advancement, nationally and internationally, we strive to be an effective voice for the hundreds of thousands of Americans served by MDA. We aim to encourage and facilitate active involvement of people with neuromuscular diseases in the community at large as well as in matters of public policy that are of specific concern to those with disabilities. 115000 11313 646 125667 1.00000 false false false 1955436 1955436 13363128 3809777 9553351 25255 6314 18941 6513373 3056491 3456882 14984610 PENSION POSTRETIREMENT PLAN OBLIGATIONS 20039234 20039234 174627039 179743256 -5116217 3448607 -5561739 -2113132 -7229349 178075645 3448606 3448606 174627039 174627039 179743256 179743256 179743256 Part X Part X : FIN48 Footnote The Association adopted the accounting standard for the financial statement recognition, measurement, and disclosure of uncertain tax positions effective January 1, 2009. The adoption did not have a material impact on the Associations financial position. As of December 31, 2009, the Association had no significant uncertain tax positions. Part XI, Line 8 Part XI, Line 8: Other Changes in Net Assets or Fund Balances CHANGES IN UNRECOGNIZED BENEFIT PLAN COST $ -5314996 NET ASSETS RELEASE FROM RESTRICTIONS $ -246743 Part V, Line 4 Part V, Line 4: Intended uses of the endowment fund. Endowment funds are designed to support MDA research projects and mission programs. true South America RESEARCH 66819 CASH North America RESEARCH 95000 CASH North America RESEARCH 84000 CASH North America RESEARCH 60000 CASH North America RESEARCH 59950 CASH North America RESEARCH 2000 CASH North America RESEARCH 135653 CASH North America RESEARCH 124260 CASH North America RESEARCH 120000 CASH North America RESEARCH 116160 CASH North America RESEARCH 115698 CASH North America RESEARCH 115000 CASH North America RESEARCH 114000 CASH North America RESEARCH 113121 CASH North America RESEARCH 104500 CASH North America RESEARCH 104390 CASH North America RESEARCH 103753 CASH Middle East RESEARCH 119900 CASH Middle East RESEARCH 103198 CASH Middle East RESEARCH 100000 CASH European Union RESEARCH 116700 CASH Europe RESEARCH 99323 CASH Europe RESEARCH 98230 CASH Europe RESEARCH 94210 CASH Europe RESEARCH 73000 CASH Europe RESEARCH 60000 CASH Europe RESEARCH 25650 CASH Europe RESEARCH 147341 CASH Europe RESEARCH 131661 CASH Europe RESEARCH 127985 CASH Europe RESEARCH 125000 CASH Europe RESEARCH 119842 CASH Europe RESEARCH 119750 CASH Europe RESEARCH 11250 CASH Europe RESEARCH 107883 CASH Europe RESEARCH 10000 CASH Australia RESEARCH 86493 CASH Australia RESEARCH 138750 CASH Australia RESEARCH 126735 CASH Australia RESEARCH 125000 CASH Australia RESEARCH 122700 CASH Australia RESEARCH 118750 CASH Australia RESEARCH 110796 CASH Asia RESEARCH 105305 CASH 44 false false false false false false Grantmaker's Description of How Grants are Used in Foreign Country Upon awarding a grant, but prior to disbursement of any funds, MDA requires the following of all grantees: return of the signed notice of award and submission to MDA of current regulatory documents necessary to conduct the research (institutional review board (IRB) approvals, animal care approvals, FDA or other regulatory agency approvals, and the like). Continued funding for the period of the grant is contingent upon submission to and approval by MDA of annual progress reports and reports of expenditures from all grantees. If such reports are not received, or are deemed unsatisfactory, MDA may opt to suspend or cancel funding for the grant. For some MDA translational research grants, payments to the grantee are contingent upon meeting defined milestones. In such cases, a steering committee reviews the progress of the grantee and determines whether the milestone has been met. 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CHILDRENS HOSPITAL 3001 W DR MLK JR BLVD TAMPA FL 33607 591100828 31500 0 MEDICAL DIAGNOSIS, FOLLOW-UP ST CHARLES HOSPITAL & REHAB CNTR 200 BELLE TERRE RD PORT JEFFERSON NY 11777 412076312 18000 0 MEDICAL DIAGNOSIS, FOLLOW-UP SPECIALLY FOR CHILDREN 1301 BARBARA JORDAN BLVD 200 AUSTIN TX 78723 742800601 13500 0 MEDICAL DIAGNOSIS, FOLLOW-UP SPARTANBURG NEUROLOGICAL SERVICE 362 N PINE STREET SPARTANBURG SC 29302 570902952 8100 0 MEDICAL DIAGNOSIS, FOLLOW-UP SIU SCHOOL OF MEDICINE PO BOX 19616 SPRINGFIELD IL 62794 376005961 20000 0 MEDICAL DIAGNOSIS, FOLLOW-UP SHRINERS HOSPITAL FOR CHILDREN 911 W 5th STREET SPOKANE WA 99204 362193608 7200 0 MEDICAL DIAGNOSIS, FOLLOW-UP SHRINERS HOSPITAL FOR CHILDREN 3101 SW SAM JACKSON PARK RD PORTLAND OR 97239 362193608 9000 0 MEDICAL DIAGNOSIS, FOLLOW-UP SHRINERS HOSP CHILDREN 2211 N OAK PARK AVE CHICAGO IL 60707 362193608 20000 0 MEDICAL DIAGNOSIS, FOLLOW-UP Sfida Biologic Inc 615 Arapeen Dr Suite 310 Salt Lake City UT 84108 900513929 63257 0 RESEARCH 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381889896 63000 0 MEDICAL DIAGNOSIS, FOLLOW-UP GEORGETOWN UNIVERSITY 3800 RESERVOIR RD NW WASHINGTON DC 20007 530196603 20700 0 MEDICAL DIAGNOSIS, FOLLOW-UP FRED HUTCHINSON CANCER RESEARCH 1100 FAIRVIEW AVE N SEATTLE WA 98109 237156071 60000 0 RESEARCH FOOD AND DRUG ADMINISTRATION 5600 FISHERS LANE ROCKVILLE MD 20857 530196965 81771 0 RESEARCH FLETCHER ALLEN NEUROLOGY ONE SOUTH PROSPECT STREET BURLINGTON VT 05401 030219303 6300 0 MEDICAL DIAGNOSIS, FOLLOW-UP FEDERATION of ASEB 9650 ROCKVILLE PIKE BETHESDA MD 20814 520700497 12500 0 RESEARCH EMORY UNIVERSITY 1599 CLIFTON ROAD NE 4TH FLR ATLANTA GA 30322 580566256 1119847 0 RESEARCH EMORY CLINIC 1365 CLIFTON RD NE ATLANTA GA 30322 582030692 81000 0 MEDICAL DIAGNOSIS, FOLLOW-UP ELKHART CLINIC LLC 303 S NAPPANEE ELKHART IN 46514 351911857 14400 0 MEDICAL DIAGNOSIS, FOLLOW-UP EASTERN MAINE MEDICAL CENTER 489 STATE STREET BANGOR ME 04401 010211501 10800 0 MEDICAL DIAGNOSIS, FOLLOW-UP DUKE UNIVERSITY MEDICAL CENTER 705 BROAD STREET DURHAM NC 27706 561029437 81000 0 MEDICAL DIAGNOSIS, FOLLOW-UP DUKE UNIVERSITY 2200 W MAIN STREET STE 820 DURHAM NC 27708 560532129 373863 0 RESEARCH DREXEL NEUROLOGICAL ASSOCIATES 245 NORTH 15TH ST PHILADELPHIA PA 19102 754022380 33750 0 MEDICAL DIAGNOSIS, FOLLOW-UP DRA MARLA JORDAN PO BOX 8010 MARINA STATION MAYAGUEZ PR 00680 582836633 6421 0 MEDICAL DIAGNOSIS, FOLLOW-UP DENT NEUROLOGIC GROUP LLP 3980 SHERIDAN DRIVE 6TH FLOOR AMHERST NY 14226 161582336 15750 0 MEDICAL DIAGNOSIS, FOLLOW-UP DEAN CLINIC 1808 W BELTLINE HWY MADISON WI 53713 391128616 12500 0 MEDICAL DIAGNOSIS, FOLLOW-UP COOPER CLINIC 6801 ROGERS AVENUE FORT SMITH AR 72903 710445686 16200 0 MEDICAL DIAGNOSIS, FOLLOW-UP COOK CHILDRENS MEDICAL CENTER 901 SEVENTH AVENUE STE 120 FORT WORTH TX 76104 752051646 8100 0 MEDICAL DIAGNOSIS, FOLLOW-UP COLUMBUS CHILDRENS HOSPITAL 700 CHILDRENS DR COLUMBUS OH 43205 314379441 28800 0 MEDICAL DIAGNOSIS, FOLLOW-UP COLUMBIA UNIVERSITY MEDICAL CNTR 710 WEST 168TH STREET NEW YORK NY 10032 133908657 176400 0 MEDICAL DIAGNOSIS, FOLLOW-UP COLUMBIA UNIV MEDICAL CENTER 630 W 168TH ST BOX 49 NEW YORK NY 10032 135598093 1285085 0 RESEARCH CLINICAL NEUROLOGY PC 4221 S WESTERN SUITE 5010 OKLAHOMA CITY OK 73109 412141136 107100 0 MEDICAL DIAGNOSIS, FOLLOW-UP CLEVELAND CLINIC FOUNDATION 9500 EUCLID AVE CLEVELAND OH 44195 340714585 187891 0 RESEARCH CLARIAN HEALTH PARTNERS 550 N UNIVERSITY BLVD INDIANAPOLIS IN 46202 351955872 22500 0 MEDICAL DIAGNOSIS, FOLLOW-UP CHRISTUS SPOHN HOSPITAL 600 ELIZABETH STREET CORPUS CHRISTI TX 78404 741109836 12600 0 MEDICAL DIAGNOSIS, FOLLOW-UP CHRISTIANA CARE HEALTH SVS 774 CHRISTIANA RD STE 201 WILMINGTON DE 19713 510103684 5400 0 MEDICAL DIAGNOSIS, FOLLOW-UP CHILDRENS RESEARCH INSTITUTE 111 MICHIGAN AVE NW WASHINGTON DC 20010 521654453 323865 0 RESEARCH CHILDRENS MED CENTER OF DALLAS 1935 MOTOR STREET Dallas TX 75235 750800628 27000 0 MEDICAL DIAGNOSIS, FOLLOW-UP CHILDRENS HOSPITALMEDICAL CNTR 4800 SAND POINT WAY BOX 5371 SEATTLE WA 98105 910564748 49050 0 MEDICAL DIAGNOSIS, FOLLOW-UP CHILDRENS HOSPITAL OF PITTSBURG 3705 FIFTH AVE PITTSBURGH PA 15213 250402510 18900 0 MEDICAL DIAGNOSIS, FOLLOW-UP CHILDRENS HOSPITAL NEUROLOGY 300 LONGWOOD AVENUE BOSTON MA 02115 222678594 27000 0 MEDICAL DIAGNOSIS, FOLLOW-UP CHILDRENS HOSPITAL NATL MED CTR 111 MICHIGAN NW WASHINGTON DC 20010 530196580 32400 0 MEDICAL DIAGNOSIS, FOLLOW-UP CHILDRENS HOSPITAL MEDICAL CNTR 3333 BURNET AVE CINCINNATI OH 45229 310833963 40500 0 MEDICAL DIAGNOSIS, FOLLOW-UP CHILDRENS HOSPITAL CENTRAL CA 9300 VALLEY CHILDRENS PLACE MADERA CA 93638 941294954 9000 0 MEDICAL DIAGNOSIS, FOLLOW-UP CHILDRENS HOSPITAL BOSTON 300 LONGWOOD AVE BOSTON MA 02115 042774441 324870 0 RESEARCH CHILDRENS HOSPITAL ORANGE CNTY 455 S MAIN STREET ORANGE CA 92868 952321788 5400 0 MEDICAL DIAGNOSIS, FOLLOW-UP CHILDRENS HOSPITAL 200 HENRY CLAY AVENUE NEW ORLEANS LA 70118 720467503 9000 0 MEDICAL DIAGNOSIS, FOLLOW-UP CHILDRENS HOSPITAL 3020 CHILDRENS WAY SAN DIEGO CA 92123 951691313 45000 0 MEDICAL DIAGNOSIS, FOLLOW-UP CHILDRENS HOSPITAL 2924 BROOK ROAD RICHMOND VA 23220 540506309 15300 0 MEDICAL DIAGNOSIS, FOLLOW-UP CHILDRENS HOSPOF PHILADELPHIA 34TH STREET CIVIC CENTER PHILADELPHIA PA 19104 231352166 90000 0 MEDICAL DIAGNOSIS, FOLLOW-UP CHILDRENS HOSP OF PHILADELPHIA 3615 CIVIC CENTER BLVD PHILADELPHIA PA 19104 231352166 451363 0 RESEARCH CHILDRENS CLINICS FOR REHAB SVS 2600 NORTH WYATT DRIVE TUCSON AZ 85712 860667510 24300 0 MEDICAL DIAGNOSIS, FOLLOW-UP CHILD NEUROLOGY ASSOC 5505 PEACHTREE DUNWOODY RD STE 500 ATLANTA GA 30342 581947689 36000 0 MEDICAL DIAGNOSIS, FOLLOW-UP CEDARS-SINAI MEDICAL CENTER 8700 BEVERLY BOULEVARD LOS ANGELES CA 90048 951644600 311579 0 RESEARCH CATABASIS PHARMACEUTIC 161 First Street Suite 1 Cambridge MA 02142 263687168 75000 0 RESEARCH CASTLE MEDICAL CENTER 640 ULUKAHIKI STREET KAILUA HI 96734 990107330 22500 0 MEDICAL DIAGNOSIS, FOLLOW-UP CAROLINAS MEDICAL CTNR 1221 E MOREHEAD CHARLOTTE NC 28204 561398929 181524 0 RESEARCH CAROLINAS MEDICAL CENTER 1010 EDGEHILL ROAD NORTH CHARLOTTE NC 28207 566060481 90000 0 MEDICAL DIAGNOSIS, FOLLOW-UP CARLE CLINIC ASSOCIATION 602 WEST UNIVERSITY AVENUE URBANA IL 61801 371188284 10800 0 MEDICAL DIAGNOSIS, FOLLOW-UP CAL PACIFIC MEDICAL CTR 475 BRANNAN STREET STE 220 SAN FRANCISCO CA 94107 940562680 312691 0 RESEARCH CAL PACIFIC MEDICAL CTR 2324 SACRAMENTO ST STE 150 SAN FRANCISCO CA 94115 940562680 90000 0 MEDICAL DIAGNOSIS, FOLLOW-UP CAL INST OF TECHNOLOGY 1200 E CALIFORNIA BLVD PASADENA CA 91125 951643307 60000 0 RESEARCH BURNHAM INSTITUTE 10901 N TORREY PINES RD LA JOLLA CA 92037 510197108 103112 0 RESEARCH BRIGHAM & WOMENS HOSPITAL INC 75 FRANCIS STREET BOSTON MA 02115 042312909 611045 0 RESEARCH BRIGHAM & WOMENS HOSPITAL 75 FRANCIS STREET BOSTON MA 02115 042312909 32580 0 MEDICAL DIAGNOSIS, FOLLOW-UP BOSTON BIOMEDIC RESEARCH 64 GROVE STREET WATERTOWN MA 02472 042451939 100994 0 RESEARCH BILLINGS CLINIC 2800 10TH AVE NORTH BOX 37000 BILLINGS MT 59107 810407289 11700 0 MEDICAL DIAGNOSIS, FOLLOW-UP BETH ISRAEL DEACONESS MEDICAL 330 BROOKLINE AVE BOSTON MA 02215 042103881 118232 0 RESEARCH BAYLOR COLLEGE OF MEDICINE ONE BAYLOR PLAZA HOUSTON TX 77030 741613878 589210 0 RESEARCH BAPTIST HOSPITAL EAST 4000 KRESGE WAY LOUISVILLE KY 40207 610444707 11700 0 MEDICAL DIAGNOSIS, FOLLOW-UP ARIZONA STATE UNIVERSITY PO BOX 873503 TEMPE AZ 85287 860196696 122033 0 RESEARCH ALS THERAPY DEV INST 215 First Street Cambridge MA 02142 043462719 3540600 0 RESEARCH ALL GRANTS UNDER 5K 3300 East Sunrise Drive Tucson AZ 85718 42346 0 MEDICAL DIAGNOSIS, FOLLOW-UP ALFRED duPONT HOSPITAL FOR CHILD 1600 ROCKLAND ROAD WILMINGTON DE 19899 590634433 49500 0 MEDICAL DIAGNOSIS, FOLLOW-UP ALBERT EINSTEIN COLLEGE OF MED 1300 MORRIS PARK AVE BRONX NY 10461 131624225 130500 0 RESEARCH ALBANY MEDICAL COLLEGE 47 NEW SCOTLAND AVE ALBANY NY 12208 141338310 18900 0 MEDICAL DIAGNOSIS, FOLLOW-UP ALASKA REGIONAL HOSPITAL 2801 DeBARR ROAD ANCHORAGE AK 99508 611000033 9000 0 MEDICAL DIAGNOSIS, FOLLOW-UP ACCELERON PHARMA 149 Sydney St Cambridge MA 02139 270072226 500000 0 RESEARCH 4s3 BIOSCIENCE INC 43 Riverside Ave 4 Medford MA 02115 320246380 148138 0 RESEARCH 45 234 Grantmaker's Description of How Grants are Used Upon awarding a grant, but prior to disbursement of any funds, MDA requires the following of all grantees: return of the signed notice of award and submission to MDA of current regulatory documents necessary to conduct the research (institutional review board (IRB) approvals, animal care approvals, FDA or other regulatory agency approvals, and the like). Continued funding for the period of the grant is contingent upon submission to and approval by MDA of annual progress reports and reports of expenditures from all grantees. If such reports are not received, or are deemed unsatisfactory, MDA may opt to suspend or cancel funding for the grant. For some MDA translational research grants, payments to the grantee are contingent upon meeting defined milestones. In such cases, a steering committee reviews the progress of the grantee and determines whether the milestone has been met. X X true true X X X false false false false false false false false false false VALERIE A CWIK MD 181269 3625 6026 190920 PETER MORGAN 170823 11672 3416 185911 KEVIN W MORAN 148310 2966 11672 162948 JOHN WALSH 148616 11672 2972 163260 GERALD C WEINBERG 381022 5983 387005 GAIL SCHMERTZ KERNER ESQ 197343 3947 11672 212962 Sch J, Part I, Line 1a Part I, Line 1a: Relevant information in regards to selections on 1a. EDWARD NIGRO MDA BOARD MEMBER 215040 REAL ESTATE RENOVATIONS false STEVE FARELLA MDA BOARD MEMBER 219307 PLACEMENT OF PSA'S false DANIEL G FRIES MDA BOARD MEMBER 314285 PENSION ACTUARIES SERV false X 6 34 639661 MEDICAL EQUIP 83 517762 APPRAISAL false true false Form 990, Part VI, Line 19 Form 990, Part VI, Line 19: Other Organization Documents Publicly Available Governing documents and the conflict of interest policies are internal documents. Copies of the audited financial statements are available upon request. Form 990, Part VI, Line 15b Form 990, Part VI, Line 15b: Compensation Review and Approval Process for Officers and Key Employees Compensation is comparative to other national agencies and is approved by the Board of Directors Form 990, Part VI, Line 12c Form 990, Part VI, Line 12c: Explanation of Monitoring and Enforcement of Conflicts The conflict of interest policy is monitored by the human resource department in conjunction with the MDA legal department Form 990, Part VI, Line 11 Form 990, Part VI, Line 11: Form 990 Review Process Each Board Member is provided with a paper version of the federal form 990 before filing with the IRS. Client Note 5 - Statement 5Schedule L, Part IVMDA Board member Dan Fries is employed by Sibson Consulting as Senior Vice President and Marketing Director. Sibson MDA's pension actuaries, received fees of $314,285.MDA Board member Steve Farella is Chief Executive Officer of TargetCast. TargetCast provides MDA with placement of free public service announcements in national media publications. In 2010 TargetCast Industries, Inc. receieved fees of $219,307.MDA Board member Edward Nigro is president of Omega Industries, Inc. was contracted to oversee the expansion and reovations of the National Headquarters. In 2010 Omega Industries, Inc. received fees of $215,040. Client Note 4 - Schedule J Compensation InformationPart 1 Line 1aSpecial travel arrangements are authorized for board members who require accommodations due to their physical conditions. Client Note 3 - PROFESSIONAL AND PUBLIC HEALTH EDUCATIONIn the year ended December 31, 2010, the Muscular Dystrophy Association (MDA) expended $23.2 million on its professional and public health education program. MDA annually provides the medical profession, scientific community, general public, and people affected by neuromuscular diseases with timely and thorough information about MDA's programs and the diseases they cover.MDA successfully worked with media outlets nationwide in 2010, placing more than 10,000 documented news stories about its lifesaving mission on network, syndicated and local media outlets, along with substantial news coverage on the Internet. Conservatively representing hundreds of millions of impressions collectively, these valuable earned media placements were reinforced by thousands of no-cost public service advertisements. In addition to free banner advertisements on many high-traffic websites, large numbers of MDA's award-winning "Make a Muscle, Make a Difference" PSAs were published by newspapers and other periodicals; broadcast by national, regional and local television, cable and radio stations.MDA publications and extensive online postings produced a steady stream of information about MDA-funded research and health care services, as well as insightful articles on relevant legislation and inspiring individuals. MDA produced four issues of its award-winning national magazine, Quest, offering a readership of more than 350,000 a stimulating mix of articles. The Association also published six issues of ALS News magazine for those affected by ALS (amyotrophic lateral sclerosis or Lou Gehrig's disease) helping keep nearly 60,000 readers informed.In addition, MDA produced and distributed a variety of educational videos for families affected by muscular dystrophy and related diseases. These videos were reinforced by an extensive array of program-specific spots broadcast during the 2010 MDA Labor Day Telethon viewed by tens of millions. Among these spots were special profiles of people living with neuromuscular diseases; research updates; educational spots on the myriad of medical and health care services available through MDA's national network of 200 hospital-affiliated clinics; a spotlight on MDA's extraordinary summer camp program for children ages six to 17, and much more. The Association also continued to enhance its popular mda.org website, as well as a dozen other microsites. Internationally recognized as a key source of information about muscle and nerve diseases, total 2010 page views at mda.org surpassed 5 million, with unique visitors exceeding 2.2 million for the year.MDA also facilitated and promoted a variety of online chats monthly to give the families it serves, as well as medical and health care professionals, ample opportunities to ask questions about diseases, research, services and many other topics. Client Note 2 - HEALTH CARE AND COMMUNITY SERVICESThroughout the United States and Puerto Rico, the Muscular Dystrophy Association (MDA) provides a wide variety of services to those affected by any of the disorders in its program, irrespective of age, race, creed, gender or color. MDA's services program is designed to assist those affected by muscular dystrophy and related diseases of the neuromuscular system, which affect children as well as adults. A complete list of diseases covered by MDA is contained in the Association's services brochure, copies of which are available upon request through MDA's National Headquarters at 3300 East Sunrise Drive, Tucson, Arizona 85718, from any of its 200 field offices in the United States and Puerto Rico, or its Web site at www.mda.org.MDA maintains the most comprehensive services program of any voluntary health agency in the country, helping individuals and their families meet the problems imposed by chronic, progressive neuromuscular diseases. This aspect of the Association's program accounted for over $ 77.3 million of its 2010 expenditures. The Association makes available a broad program of services ranging from a nationwide network of clinics providing access to top health professionals skilled in the diagnosis and medical management of neuromuscular diseases to assistance with essential support services, including the following: Diagnostic consultations and follow-up examinations by neuromuscular specialists through a nationwide network of 200 MDA clinics A national medical equipment program providing gently-used items, such as wheelchairs, communication technologies, walkers, hospital beds, bath aids and other assistive devices to enhance independence Assistance with repairs to prescribed medical equipment Nearly 80 week-long summer camp programs across the country providing fun and friendship for children affected by neuromuscular disease Annual physical, occupational, respiratory and speech therapy consultations Free flu shots Transitional services designed to provide support and resources for youth with neuromuscular disease who are entering adulthood Referrals to federal, state and community-based resources that offer assistance to those living with disabilities Support groups to assist families and individuals in coping with the special problems imposed by neuromuscular diseases Online support network and e-community, www.mda.org/mymda Online care coordination tool for families served by MDA, www.mda.org/myMuscleTeam/ Educational seminars that provide information about neuromuscular diseases and offer a forum to discuss subjects of importance to families living with these disordersMDA ClinicsMDA maintains a network of 200 hospital-affiliated neuromuscular clinics located at medical institutions and university-based facilities across the United States and Puerto Rico. Each year MDA provides tens of thousands of medical visits through its clinic program. Individuals affected by any of the disorders in MDA's purview have access to these clinics staffed by top health professionals using a multidisciplinary team approach. These experts advise about all aspects of medical management of neuromuscular disease, including respiratory care and physical therapy. Anyone whose physician suspects a neuromuscular disorder, upon referral by the person's physician, is eligible for a diagnostic evaluation at an MDA clinic. Should the diagnosis indicate a disease other than one included in MDA's program, the Association will then refer the individual to an appropriate community resource.Also, MDA clinics are essential to the advancement of neuromuscular disease research and serve as focal points for the clinical application of scientific advances designed to treat these disorders. They serve as the key centers for ongoing clinical trials for the development of potential therapies, which is the main priority of MDA's research program. As part of its clinic program, the Association has established 38 amyotrophic lateral sclerosis (ALS) centers across the country to focus attention on this very rapidly progressive debilitating neuromuscular disorder that strikes adults in the prime of life. Sites of MDA's ALS centers are as follows:* The Eleanor and Lou Gehrig MDA/ALS Center at Columbia University Medical Center in New York, NY;* Forbes Norris MDA/ALS Center at California Pacific Medical Center in San Francisco, CA; * Jerry Lewis MDA/ALS Clinical and Research Center in Los Angeles, CA; * MDA/ALS Center at the University of Wisconsin in Madison, WI; * MDA/ALS Center at Methodist Neurological Institute in Houston, TX; * MDA/ALS Center at Massachusetts General Hospital in Boston, MA; * MDA/ALS Center at the University of Illinois at Chicago in Chicago, IL; * MDA/ALS Center at UCLA in Los Angeles, CA; * MDA/ALS Center at the University of Colorado in Denver, CO; * MDA/ALS Center at Yale University in New Haven, CT; * MDA/ALS Center at Emory University School of Medicine in Atlanta, GA; * MDA/ALS Center at Johns Hopkins University in Baltimore, MD; * MDA/ALS Center at Washington University School of Medicine in St. Louis, MO; * MDA/ALS Center at the University of Texas in Dallas, TX; * Kessenich Family MDA/ALS Center at the University of Miami, FL; * MDA/ALS Center at the University of Utah in Salt Lake City, UT; * MDA/ALS Center at Carolinas Medical Center in Charlotte, NC; * MDA/ALS Center at SUNY Upstate Medical University in Syracuse, NY; * MDA/ALS Center at the University of Kansas Medical Center in Kansas City, KS; * The MDA/ALS Center at the Michigan Institute for Neurological Disorders in Farmington, MI.* MDA/ALS Center of Hope at Drexel University College of Medicine in Philadelphia, PA;* MDA/ALS Center at St. Joseph's Hospital and Medical Center in Phoenix, AZ;* MDA/ALS Center at UPH Hospital in Tucson, AZ;* MDA/ALS Center at the University of New Mexico Health Sciences Center in Albuquerque, NM;* MDA/ALS Center at the University of California, Irvine, CA;* MDA/ALS Center through the University of Texas Health Science Center at San Antonio, TX;* MDA/ALS Center at the University of Washington Medical Center in Seattle, WA;* MDA/ALS Center at Vanderbilt University Medical Center in Nashville, TN;* MDA/ALS Center at Ohio State University in Columbus, OH;* MDA/ALS Center at the University of Rochester Medical Center in Rochester, NY;* MDA/ALS Center at the University of Arkansas for Medical Sciences in Little Rock, AR;* MDA/ALS Center at the University of Pittsburgh Medical Center in Pittsburgh, PA;* MDA/ALS Center at the University of Massachusetts Medical Center in Worcester, MA;* MDA/ALS Center at Integris Southwest Medical Center in Oklahoma City, OK;* MDA/ALS Center at Oregon Health & Science University in Portland, OR;* MDA/ALS Center of Memphis Mid-South in Cordova, TN.* MDA/ALS Center at UCSF Medical Center in San Francisco, CA.* The Michigan State University MDA/ALS Center with two clinical sites at Michigan State University in East Lansing and Mary Free Bed Rehabilitation Hospital in Grand Rapids, MIMDA's services program is administered through its network of 200 field offices located in the United States and Puerto Rico. MDA health care service coordinators knowledgeable about federal, state and local community resources also assist families served by MDA by advising them about other services for which they may be eligible. MDA provides assistance to those it serves in need of prescribed medical equipment. In 2010 thousands of adaptive devices were provided to individuals through MDA's equipment program -- including, but not limited to, walkers, canes, bath equipment, wheelchairs, hydraulic lifts, communication technologies and hospital beds. MDA also assisted with repairs to all types of medical equipment for those it serves. In 2010, nearly 3,500 children ages 6-17 enjoyed a week of fun and friendship through MDA summer camps which offer activities geared to the special needs and abilities of those with neuromuscular disease. Thousands of individuals and their families received support through MDA's nationwide network of nearly 200 support groups, as well as through MDA-sponsored educational seminars, referral services and online chat sessions at www.mda.org/chat/calendar.html and live expert-hosted webinars which are then archived at www.mda.org. Support also was available through MDA's e-community, www.mda.org/mymda, and its online care coordination tool for families, www.mda.org/myMuscleTeam/.Additional information about MDA's Health Care and Community Services Program is available through MDA's Web site at www.mda.org/services.html. Client Note 1 - RESEARCHGeneralThe Muscular Dystrophy Association, Inc., (MDA) is a not-for-profit corporation incorporated on June 6, 1950, under the laws of the State of New York. MDA supports worldwide research to find the causes of and cures for muscular dystrophy and related neuromuscular disorders. The programs of MDA are supported almost entirely by individual private contributions from the general public. MDA neither receives fees from those it serves nor applies any means test for services, and by choice is not a United Way-supported agency.The diseases supported by MDA are the muscular dystrophies (among which are Duchenne and Becker); motor neuron diseases, including amyotrophic lateral sclerosis (ALS, Lou Gehrig's disease) and spinal muscular atrophy; the peripheral nerve disorders Charcot-Marie-Tooth disease and Friedreich's ataxia; inflammatory myopathies; disorders of the neuromuscular junction; metabolic diseases of muscle as well as other myopathies. Many of the disorders in MDA's program are genetic. Most cause progressive weakness resulting in significant disability and chronic mobility impairment. Some of the over 40 neuromuscular diseases covered by MDA are fatal.As reported by the U.S. Department of Health and Human Services, National Institutes of Health (NIH), in the United States alone, muscular dystrophy and other neuromuscular disorders are estimated to affect some 1 million people.ResearchMDA continues to support some 300 research teams worldwide through its investigator initiated research grants program primarily at academic institutions. It is the basic science supported by MDA at these institutions that has led to the discoveries now being applied to the development of effective therapies. The Association is funding studies in genetic-based therapies, stem cell therapy, drug development, muscle and nerve biology, proteomics, muscle and nerve regeneration and differentiation, etc.MDA sponsors research grants in the United States and 15 foreign countries. The Association's research program accounted for some $35.1 million of its expenditures for the calendar year. MDA's Scientific and Medical Advisory Committees, whose members are among the nation's foremost scientists and physicians in the field of neuromuscular disease, carefully review all research supported by the Association. MDA maintains a diverse program of basic research which advances investigations of possible treatments for neuromuscular diseases, muscle function, regulation and regeneration; biochemical changes involved in muscle disease; the genetics of neuromuscular disease; and the interaction of nerve and muscle. This work is necessary in order to provide a sound scientific foundation from which practical advances against disease can arise. Additionally, the Association's Translational Research Program is focused on milestone driven contracts with the biotech industry, pharmaceutical companies and academic investigators for research that is directly relevant to bringing new therapies to market. Advisors to MDA's Translational Research Program include a number of top neuromuscular disease researchers, as well as representatives of NIH and industry. Searching for the Causes of Neuromuscular DiseaseThe majority of the neuromuscular diseases covered by MDA's programs, including all of the muscular dystrophies, are genetic disorders. In 1986, MDA researchers ushered in a new era in neuromuscular disease research with the identification of the gene that when defective causes Duchenne and Becker muscular dystrophies. This gene, the largest human gene ever discovered, was the first major human disease gene isolated without prior knowledge of its protein product. MDA has been in the forefront of research on inherited diseases with an ever-expanding list of new genetic research projects and an extensive list of genes that have been found defective in inherited neuromuscular disorders. MDA-funded scientists continue to investigate the causes of neuromuscular disease.Search for TreatmentFindings from early research supported by MDA served as the scientific basis for approval by the FDA of the first drug available for prescription use for ALS. This drug, called riluzole, works by partially blocking the natural substance glutamate. MDA researchers worked on the glutamate theory that led to riluzole's development. Over the years a number of measures have been adopted to treat neuromuscular diseases including, nutrition, bracing, physical therapy and drugs such as prednisone. Several measures are used to successfully manage these disorders. Plasma exchange is a life saving measure for myasthenia gravis, prednisone slows the progression of muscle weakness in Duchenne muscular dystrophy (DMD) and L-carnitine is used in the treatment of carnitine deficiency.MDA sponsored early research in Pompe's disease and also helped support clinical testing of Myozyme, which was developed by Genzyme Corp. of Cambridge, Mass. Myozyme is the first FDA-approved therapy for a genetic disorder in MDA's program. Recent Research AccomplishmentsThe first U.S. human gene therapy trial of Biostrophin targeting Duchenne Muscular Dystrophy (DMD), launched in March 2006 at Columbus Children's Hospital (now Nationwide Children's Hospital in Ohio) in boys with DMD, have shown that the procedure, in a single muscle, is safe and well tolerated. Gene therapy studies for DMD have advanced to a second phase - large animal studies in canine and non-human primate DMD models to test the safety and effectiveness of delivering Biostrophin, to replace the faulty gene in DMD, to an entire limb. Gene therapy is also under development for limb-girdle muscular dystrophy (LGMD). A clinical trial of gene therapy for type 2D LGMD, caused by a deficiency of the protein alpha-sarcoglycan, proved the therapy to be safe and well-tolerated when injected into a single foot muscle. The treatment also resulted in a significant increase in the amount of alpha-sarcoglycan protein in the gene-injected muscle. MDA continues to support studies for development of gene transfer via the bloodstream aimed at delivering the treatment to multiple muscles simultaneously, which will be necessary for clinical benefit. Exon skipping coaxes muscle cells to ignore, or "skip over," a flawed section of genetic instructions for the dystrophin protein, which is missing in people with DMD. Data from several studies demonstrated that this strategy has great therapeutic potential. MDA funded much of the early work that led to exon skipping drugs that are now in human clinical trials, and MDA continues to develop the strategy for DMD. The first U.S. human clinical trial for exon skipping in DMD began in 2010 and a second trial will get underway in 2011. Researchers found a critical key to blocking the cause of myotonic muscular dystrophy, the most common form of muscular dystrophy, by fooling defective genetic material in a discovery that could have major implications for finding a treatment for the disease. They used a synthetic molecule, called a morpholino antisense oligonucleotide, CAG25, to block disease-causing genetic instructions in cells. The CAG25 released proteins held hostage in muscle and other cells by defective RNA, a byproduct of the flawed genetic instructions. The blocked proteins resumed their normal functions and the muscles showed improvement in molecular structure and function. Planning for human clinical trials of this therapeutic strategy for myotonic muscular dystrophy is underway. In ALS, therapies are under development to target the underlying cause in an inherited form of the disorder. Some familial cases of ALS are caused by mutations in the superoxide dismutase 1 (SOD1) gene, resulting in the production of SOD1 protein that is toxic to motor neurons. Investigators at Washington University (St. Louis, MO) and Massachusetts General Hospital (Boston, MA) are testing whether antisense oligonucleotides, developed by ISIS Pharmaceuticals of Carlsbad, CA, can inhibit the toxic SOD1 protein. Human trials began in 2010. MDA and the ALS Therapy Development Institute (ALS TDI) continued to work together in 2010 and the Association provided the institution a new $2.5 million milestone-driven grant as part of the drug discovery partnership begun in 2007. In 2010, ALS TDI's leading therapeutic candidate was ALSTDI-00846, a molecule that blocks a key immune pathway identified as being overactive in some cases of ALS. MDA's Clinical Research Network, which includes five sites focused on DMD and five on ALS continued several clinical studies. The DMD network is developing clinical trial outcome measures for very young children as well as those no longer walking with DMD. In the future, these populations, typically excluded from clinical trials, will have the opportunity to participate in trials of promising therapies. In addition, the DMD investigators are conducting a study of the natural history of cardiomyopathy i