2015-08-14T12:07:42-05:00 2014-12-31 BDO USA LLP 7101 WISCONSIN AVE SUITE 800 BETHESDA MD 208144827 990 2014-01-01 131665552 MUSCULAR DYSTROPHY ASSOCIATION INC % STEPHEN P EVANS VP FINANCE MUSC 3122605900 222 SOUTH RIVERSIDE PLAZA Suite 1500 CHICAGO IL 606066000 JULIE FABER CFO 7038930600 2015-08-13 true Mike Sorrells P00001737 3016544900 2014 2016-03-07 17:11:31Z STEVEN DERKS 222 S RIVERSIDE PL STE 1500 CHICAGO IL 60606 214180662 false X www.mda.org X 1950 NY SEE SCHEDULE O 17 17 1150 1500000 211673 144990094 135174690 0 0 4164516 3594376 1171110 1602169 150325720 140371235 38730052 29432206 0 0 61530638 60138523 534111 540001 21355553 47210391 41404992 148005192 131515722 2320528 8855513 102852460 97787518 81721263 91626238 21131197 6161280 X MDA IS THE NONPROFIT HEALTH AGENCY DEDICATED TO CURING MUSCULAR DYSTROPHY, ALS, AND RELATED DISEASES BY FUNDING WORLDWIDE RESEARCH. THE ASSOCIATION ALSO PROVIDES COMPREHENSIVE HEALTH CARE AND SUPPORT SERVICES, ADVOCACY, AND EDUCATION. false false 61377651 13368540 0 HEALTH CARE AND COMMUNITY SERVICES People with muscular dystrophy and related diseases are our moms and dads, sons and daughters, our friends, neighbors, coworkers and loved ones. At MDA, we're proud to offer the medical expertise and care that will help manage disease symptoms so that health and well-being will be optimized. We're committed to maximizing strength and mobility for these families, promoting their quality of life and independence, breaking down barriers, and of course, making sure they know they are never alone in this fight. Families living with neuromuscular diseases face enormous daily challenges. MDA maintains the most comprehensive services program of any voluntary health agency in the country to help improve lives and support families from day one. Ranging from a nationwide network of comprehensive clinics at the nation's top medical facilities to assistance with essential support services, MDA is here to help families today. Our heath care and community services accounted for $61,377,651 of our 2014 expenditures. As we strive to revolutionize care and support, here are some of the key ways we supported families in 2014: 1. Provided comprehensive care focused on families' needs at nearly 200 MDA clinics through nearly 57,000 visits 2. Hosted nearly 150 critical support groups for families to address daily needs and challenges 3. Offered nearly 80 week-long summer camps for more than 3,700 children to help build self-confidence and independence and remove barriers of everyday life 4. Provided equipment repairs and support to help families maintain independence 5. Gave help and guidance to young people transitioning from childhood to adulthood at transitions.mda.org to help them live independently and thrive. Additionally, through MDA's advocacy program, we've made legislators and regulatory agencies more aware of issues affecting the neuromuscular disease community and have pushed for passage of life-changing legislation. In 2014, our efforts alongside our passionate families and volunteers helped get the ABLE Act signed into law and helped enact critical updates to the MD-CARE Act and the Newborn Screening Saves Lives Reauthorization Act, among other important progress. 18498911 16063666 0 RESEARCH Every day, children are born with muscular dystrophy and many other life-threatening diseases affecting muscles that take away their ability to walk, move, hug, talk and even breathe. Similarly, adults are facing devastating diseases like ALS that cause muscles to deteriorate and result in loss of mobility and other severe health complications. For these kids and adults, there are currently few treatments and no cures. MDA's research program is designed to change that. We are the only nonprofit taking a big-picture perspective on diseases that limit muscle strength and mobility by being laser-focused on breakthroughs across disease categories. What we learn on the frontlines in one area can potentially have positive impacts in others. In 2014, MDA spent $18,498,911 on research designed to accelerate urgently-needed treatments and cures for the families we serve. We contributed to more than 30 clinical trials for novel drugs and therapies. Thanks in part to this progress, more new drugs in development are expected during the next five years than in the previous 50. Some of the areas where we see the greatest potential are: 1. Gene targeting therapies (replacement, exon skipping, mutation read-through): Gaining traction in DMD, SMA, LGMD, FSHD 2. Stem cell therapies: Testing in DMD, BMD, FSHD, MG, ALS 3. Small molecule therapies: In trials to improve multiple facets of neuromuscular disease, such as muscle atrophy, mitochondrial dysfunction, muscle contractility, inflammation, reduced perfusion and fibrosis (HT-100) In 2014, MDA was sponsoring 155 research grants to leading scientists across the globe. 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 evaluate all grant proposals submitted. Reports on ongoing progress in MDA's effort to discover treatments and cures, including the status of human trials of potential therapies, can be found at www.mda.org/research2. 17459993 0 0 PROFESSIONAL AND PUBLIC HEALTH EDUCATION Muscular dystrophy, ALS and other life-threatening diseases that limit muscle strength and mobility take away everyday abilities such as walking, standing, dressing oneself, hugging someone dear and even breathing. At MDA, we dedicate every minute of every day to fighting to free our families from the harmful effects of these diseases. Providing professional and public education is one of the many ways MDA is working to save and improve lives. In 2014, MDA spent $17,459,993 to provide professional and public health education. We promoted deeper understanding and awareness to rally and inspire action through a variety of innovative strategies: 1. Placed thousands of documented news stories about MDA's mission with network, syndicated and local broadcast outlets, print news publications and online, including frequent social media postings through Facebook, Twitter and Instagram. 2. Produced, distributed and posted on YouTube hundreds of informational videos and educational materials about the challenges of living with muscular dystrophy and related diseases, facts and information, practical tips to help families, personal stories and more. 3. Delivered timely information on mda.org, which is recognized internationally as a key source of information about neuromuscular diseases. 4. Hosted the pre-eminent gathering of neuromuscular disease physicians and health care providers at the 2014 MDA Clinical Conference in Chicago to bring together the nation's best and brightest clinicians to accelerate progress and enhance care for people living with neuromuscular and motor neuron diseases. 97336555 true false false true false false false true false true true false false false true true true false false false true true false true true true false true false true false false false false false false false true true true false false false false false false false true 1028 23 true 1150 true true true false false false false true true true 18 false false false X 17 17 false false true false false false false true true false true true true true true true true true true true false AL AK AZ CA CO CT DE DC FL GA HI ID IL IN IA KS KY LA ME MD MA MI MN MS MO MT NE NV NJ NM NY NC ND OH OK OR PA PR RI SC SD TN UT VA WA WV WI WY X X STEPHEN P EVANS VP FINANCE 3122605900 222 SOUTH RIVERSIDE PLAZA STE 1500 CHICAGO IL 60606 Stanley H Appel MD Director 1.0 0.0 X 0 0 0 Robert M Bennett Director Emeritus 1.0 0.0 X 0 0 0 Bart Conner Director 1.0 0.0 X 0 0 0 Harold C Crump Director 1.0 0.0 X 0 0 0 Benjamin F Cumbo III Director 1.0 0.0 X 0 0 0 Joseph S DiMartino Director Emeritus 1.0 0.0 X 0 0 0 Steve Farella Director 1.0 0.0 X 0 0 0 Daniel G Fries Director 1.0 0.0 X 0 0 0 Honorable Brad Henry Director 1.0 0.0 X 0 0 0 R Rodney Howell MD Chairman 5.0 0.0 X 0 0 0 Dave Hutton Director 1.0 0.0 X 0 0 0 Louis M Kunkel PhD Director 1.0 X 0 0 0 Timmi Masters Secretary 2.0 0.0 X 0 0 0 Olin F Morris DIRECTOR 2.0 0.0 X 0 0 0 PATRICIA Nazemetz Director 1.0 0.0 X 0 0 0 Christopher J Rosa PhD DIRECTOR 2.0 0.0 X 0 0 0 Charles D Schoor Esq TREASURER 2.0 0.0 X 0 0 0 John Tognino Director 1.0 0.0 X 0 0 0 Victor Wright Director 1.0 0.0 X 0 0 0 Steven Derks President & CEO 60.0 0.0 X 471134 0 86049 Julie Faber CPA CFO & Asst Treasurer 50.0 0.0 X 233810 0 6860 Valerie A Cwik MD Asst. 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THE VERSATILITY ATTESTS TO THE IMAGINATION AND TALENT OF THE ARTISTS. THE COLLECTION FEATURES UNUSUAL ARTISTIC MEDIA, FROM DIGITAL DESIGNS TO COLLAGES WITH CORN, TO PAINT APPLIED WITH WHEELCHAIR WHEELS AND HUMAN FEET. THERE ARE ALSO MANY WORKS IN MORE TRADITIONAL OILS, WATERCOLORS, ACRYLICS, PEN AND INK, CRAYONS, PASTELS, BRONZE, CERAMICS AND PHOTOGRAPHY. SUBJECT MATTER RANGES FROM SELF-PORTRAITS TO LANDSCAPES AND FROM STILL LIFES TO OUTER SPACE FANTASIES. IN ADDITION TO SHOWCASING THE WORK OF TALENTED ARTISTS WHO ARE AFFECTED BY NEUROMUSCULAR DISEASES, THE COLLECTION ALLOWS THE ARTISTS TO ARTICULATE THEIR DISTINCTIVE VISION OF LIVING WITH A DISABILITY. FORM 990, SCHEDULE D, PART X, LINE 2 GENERALLY ACCEPTED ACCOUNTING PRINCIPLES PROVIDE ACCOUNTING AND DISCLOSURE GUIDANCE ABOUT POSITIONS TAKEN BY AN ORGANIZATION IN ITS TAX RETURNS THAT MIGHT BE UNCERTAIN. MANAGEMENT HAS CONSIDERED ITS TAX POSITIONS AND BELIEVES THAT ALL OF THE POSITIONS TAKEN BY THE ASSOCIATION IN THEIR FEDERAL AND STATE EXEMPT ORGANIZATION TAX RETURNS ARE MORE LIKELY THAN NOT TO BE SUSTAINED UPON EXAMINATION. THE ASSOCIATION'S RETURNS FOR THE YEARS ENDED DECEMBER 31, 2013, 2012, AND 2011 ARE SUBJECT TO EXAMINATION BY FEDERAL AND STATE TAXING AUTHORITIES, GENERALLY FOR THREE YEARS AFTER THEY ARE FILED. true East Asia and the Pacific Program Services GRANTS TO RECIPIENTS 479741 Europe (Including Iceland and Greenland) Program Services GRANTS TO RECIPIENTS 596198 Middle East and North Africa Program Services GRANTS TO RECIPIENTS 100003 North America Program Services GRANTS TO RECIPIENTS 807406 1983348 1983348 East Asia and the Pacific RESEARCH 479741 CHECK Europe (Including Iceland and Greenland) RESEARCH 596198 CHECK Middle East and North Africa RESEARCH 100003 CHECK North America RESEARCH 807406 CHECK 4 false false false false false false FORM 990, SCHEDULE F, PART I, LINE 2 UPON AWARDING A GRANT, BUT PRIOR TO DISBURSEMENT OF ANY FUNDS, MDA REQUIRES THE FOLLOWING OF RESEARCH GRANTEES: RETURN OF THE SIGNED NOTICE OF AWARD AND SUBMISSION TO MDA OF CURRENT REGULATORY DOCUMENTS NECESSARY TO CONDUCT THE RESEARCH(INSTITUTIONAL REVIEW BOARD 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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CONVIO, INC. 11501 Domain Drive Ste 200 Dallas, TX 78758 2. Blackbaud Inc. PO Box 930256 Atlanta, GA 31193 3. Strategic Fundraising Inc. 7800 3rd St North Ste 900 St. Paul, MN 55128 4. Donor Care Center, Inc. 480 W. Tuscarawas Ave 3rd Flr Barberton, OH 44203 true Albany Medical College-Dept of Neurology 47 New Scotland Ave MC 70 Albany NY 12208 141338310 501(c)(3) 18900 Medical Diagnosis Alfred I Dupont Hospital For Children 1600 Rockland Road-PO Box 269 Wilmington DE 19899 590634433 501(c)(3) 49500 Medical Diagnosis ALS Therapy Development Foundation 215 First Street Cambridge MA 02142 043462719 501(c)(3) 959410 Research Ann & Robert H Lurie Children's Hospital of Chica 225 E Chicago Box 205 Chicago IL 60611 362170833 501(c)(3) 25000 Medical Diagnosis Ann an Robert H Lurie Children's Hospital of Chic 225 E Chicago Box 205 Chicago IL 60611 362170833 501(c)(3) 135000 Research Arizona Board of Regents University of Arizona 1303 E University Blvd Box 3 Tucson AZ 85719 742652689 State of Arizon 279600 Research Armgo Pharma Inc 777 Old Saw Mill River Road Tarrytown NY 10591 260107795 C CORP 999056 Research Baptist Hospital East 4000 Kresge Way Louisville KY 40207 610444707 501(c)(3) 11700 Medical 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Mary Hitchcock Memorial Hospital One Medical Center Dr Lebanon NH 03756 020222140 501(c)(3) 22500 Medical Diagnosis Mayo Clinic 200 First Street SW Rochester MN 55905 416011702 501(c)(3) 5500 Research Mayo Clinic Jacksonville 4500 San Pablo Road Jacksonville FL 32224 593337028 501(c)(3) 27000 Medical Diagnosis Medical College of Virginia PO Box 980599 Richmond VA 23298 541581185 501(c)(3) 20000 Medical Diagnosis Medical College of Wisconsin 9200 W Wisconsin Ave Milwaukee WI 53226 390806261 501(c)(3) 30600 Medical Diagnosis Memorial Sloan-Kettering Cancer Center 1275 York Avenue Box 701 New York NY 10065 131924236 501(c)(3) 128634 Research Mercy Clinic Neurology 2115 S Fremont Springfield MO 65804 440552485 501(c)(3) 19000 Medical Diagnosis Mercy Health Saint Mary's 200Jefferson SE Grand Rapids MI 49503 382113393 501(c)(3) 40000 Medical Diagnosis Methodist Neurological Institute 6560 Fannin Street 802 Houston TX 77030 870721923 501(c)(3) 132300 Medical Diagnosis MetroHealth Medical Center PO Box 73122 Cleveland OH 44193 346004382 501(c)(3) 36000 Medical Diagnosis Miller School of Medicine of the University of Mia 1320 South Dixie Highway Suite 650 Coral Gables FL 33146 590624458 State of Florid 299200 Research Monmouth Medical Center Foundation 300 Second Ave Long Branch NJ 07740 223452412 501(c)(3) 27000 Medical Diagnosis Montefiore Medical Center 3351 Steuben Ave 3rd Flr Bronx NY 10467 133908657 501(c)(3) 46575 Medical Diagnosis Nationwide Children's Hospital 555 South 18th St Columbus OH 43205 311036370 501(c)(3) 7200 Medical Diagnosis Neurology Associates 1301 S Cliff Ave 506 Sioux Falls SD 57105 460364889 501(c)(3) 16200 Medical Diagnosis Neurology Associates of Arlington 811 Interstate 20 W Ste 212 Arlington TX 76017 752405825 501(c)(3) 24300 Medical Diagnosis Neurology Medical Service Group 750 East Adams Street Syracuse NY 13210 166066240 501(c)(3) 45900 Medical Diagnosis Neurology Specialists of Jupiter 601 University Blvd Suite 102 Jupiter FL 33458 650925187 501(c)(3) 7200 Medical Diagnosis Northwestern Medical Faculty Found 710 N Lake Shore Dr Rm 1119 Chicago IL 60611 393097297 501(c)(3) 62000 Medical Diagnosis Ohio State University Hospitals 1581 Dodd Drive McCampbell Hall Columbus OH 43210 316025986 State of Ohio 61200 Medical Diagnosis Olive View - UCLA Medical Center 14445 Olive View Drive 2C136 Sylmar CA 91342 952249539 State of Califo 22500 Medical Diagnosis Oregon Health & Science University 3181 SW Sam Jackson Park Road Portland OR 97201 931176109 501(c)(3) 18000 Medical Diagnosis Oregon Health and Science University 3181 SW Sam Jackson Park Rd Portland OR 97239 931176109 170 (c) (1) 117216 Research OSF Medical Group Neurology PO Box 1712 Peoria IL 61656 370662569 501(c)(3) 14125 Medical Diagnosis Our Lady of Lourdes RMC 611 St Landry St Lafayette LA 70506 720423635 501(c)(3) 9000 Medical Diagnosis Phoenix Children's Hospital 1919 East Thomas Rd Phoenix AZ 85016 860422559 501(c)(3) 6000 Medical Diagnosis Ponce School of Medicine PO Box 7004 Ponce PR 00732 660379122 501(c)(3) 36000 Medical Diagnosis President an Fellows of Harvard College PO Box 415649 Boston MA 02241 042103580 501(c)(3) 100538 Research Prevea Clinic PO Box 19070 Green Bay WI 54307 391839349 501(c)(3) 17932 Medical Diagnosis Purdue University Young Hall 155 S Grant Street West Lafayette IN 46202 356002041 State of Indian 84600 Research Rady Children's Hospital - San Diego 3020 Childrens Way MC 5118 San Diego CA 92123 951691313 501(c)(3) 33750 Medical Diagnosis Rapid City Regional Hospital PO Box 3450 Rapid City SD 57709 460319070 501(c)(3) 5400 Medical Diagnosis Rapides Specialty Clinic Division of RRMC Box 30101 211 Fourth Street Alexandria LA 71301 720702002 501(c)(3) 9000 Medical Diagnosis Regents of The University of California(Los Angele 710 Westwood Plaza 4-231 Rnrc Los Angeles CA 90095 956006143 State of Califo 108000 Medical Diagnosis Regents of The University of California(San Franci 1855 Folsom MCB 425 San Francisco CA 94143 946036493 State of Califo 25000 Medical Diagnosis Regents of The University of California Irvine Me 200 South Manchester Avenue Ste 1 Orange CA 92868 952226406 State of Califo 66000 Medical Diagnosis Regents of the University of Minnesota - Twin Citi 450 McNamara Alumni Center 200 Oak Minneapolis MN 55455 416007513 State of Minnes 251840 Research ReveraGen BioPharma Inc 8070 Georgia Ave Ste 416 Silver Spring MD 20910 263808415 C CORP 507600 Research Rhode Island Hospital 593 Eddy Street Providence RI 02903 050258954 501(c)(3) 16200 Medical Diagnosis Round Rock Medical Center 2400 Round Rock Ave Round Rock TX 78681 742781812 501(c)(3) 13500 Medical Diagnosis Rutgers New Jersey Medical School 90 Bergen St Suite 8100 Newark NJ 07101 351911857 501(c)(3) 78300 Medical Diagnosis Sacred Heart Medical Center Found 1255 Hilyard St PO Box 10905 Eugene OR 97440 931084906 501(c)(3) 13500 Medical Diagnosis Sanford Clinic Fargo Region 720 4th Street North Fargo ND 58122 911770748 501(c)(3) 17100 Medical Diagnosis Sanofi-Aventis US Inc 55 Corporate Drive Bridgewater NJ 08807 421612939 C CORP 60000 Research Sarasota Memorial Hospital 1700 Tamiami Trail Sarasota FL 34239 596012500 501(c)(3) 24000 Medical Diagnosis Sentara Norfolk General Hospital 6015 Poplar Hall Dr Ste 212 Norfolk VA 23502 541547408 501(c)(3) 22500 Medical Diagnosis Shands Hospital 302 Tigert Hall Gainesville FL 32611 596002052 501(c)(3) 22050 Medical Diagnosis Shriners Hospfor Children - Portland 3101 SW Sam Jackson Park R Portland OR 97239 362193608 501(c)(3) 9000 Medical Diagnosis Shriners Hospital For Children Chicago 2211 N Oak Park Avenue Chicago IL 60707 362193608 501(c)(3) 25000 Medical Diagnosis Shriners Hospital For Children in Spokane 911 W 5th Avenue Spokane WA 99204 362193608 501(c)(3) 7200 Medical Diagnosis Southern Research Institute 2000 Ninth Avenue South Birmingham AL 35205 630288868 501(c)(3) 84600 Research Spartanburg Neurological Services 362 N Pine Street Spartanburg SC 29302 570902952 501(c)(3) 8100 Medical Diagnosis Specially For Children 1301 Barbara Jordan Blvd 200 Austin TX 78723 742800601 501(c)(3) 13500 Medical Diagnosis St Anthony's Specialist LLC 300 S Park Place Blvd Ste 170 Clearwater FL 33759 743168197 501(c)(3) 22500 Medical Diagnosis St Charles Hospital And Rehabilitation Center 200 Belle Terre Road Port Jefferson NY 11777 412076312 501(c)(3) 18000 Medical Diagnosis St Francis Medical Ctr PO Box 1901 Monroe LA 71210 720408970 501(c)(3) 11250 Medical Diagnosis St Joseph's Children's Hospital of Tampa 2700 W Dr Martin Luther King Jr Tampa FL 33607 591100828 501(c)(3) 31500 Medical Diagnosis St Joseph's Hosp & Medical Center 350 West Thomas Rd Phoenix AZ 85013 860096787 501(c)(3) 66000 Medical Diagnosis St Jude Children's Research Hospital PO Box 1000 Dept 949 Memphis TN 38148 620646012 501(c)(3) 60000 Research St Luke's Rehabilitation Institute S 711 Cowley Spokane WA 99202 911307555 501(c)(3) 16094 Medical Diagnosis St Peter's Hospital Foundation 319 S Manning Blvd Ste 309 Roessleville NY 12205 222262982 501(c)(3) 120000 Medical Diagnosis Stanford University PO Box 44253 San Francisco CA 94144 941156365 State of Califo 84600 Research Texas Children's Hospital 6621 Fannin Houston TX 77030 741100555 501(c)(3) 13500 Medical Diagnosis Texas Neurology PA 6301 Gaston Ave Ste 200W Dallas TX 75214 752654757 C CORP 9000 Medical Diagnosis The Board of Trustees of the University of Illinoi 1737 W Polk St M/C 672 AOB 304 Chicago IL 60612 376000511 State of Illino 250286 Research The Children's Hospital 13123 E 16th Avenul Rehab Medicine Aurora CO 80045 840166760 501(c)(3) 52200 Medical Diagnosis The Children's Hospital of Philadelphia 3615 Civic Center Blvd Philadelphia PA 19104 231352166 501(c)(3) 219600 Research The Curators of the University of Missouri 310 Jesse Hall Columbia MO 65211 436003859 State of Missou 84600 Research The Duluth Clinic Ltd 400 E 3rd Street Duluth MN 55805 410883623 C CORP 6750 Medical Diagnosis The General Hospital Corporation PO BOX 414876 Boston MA 02241 042697983 501(c)(3) 123300 Medical Diagnosis The George Washington University 2121 Eye St NW Washington DC 20052 530196584 501(c)(3) 84600 Research The Methodist Hospital Research Institute 6565 Fannin MGJ4-024 Houston TX 77030 870721923 501(c)(3) 178955 Research The Nemours Foundation 10140 Centurion Parkway North Jacksonville FL 32246 590634433 501(c)(3) 50000 Medical Diagnosis The Ohio State University Research Foundation 1960 Kenny Road Columbus OH 43210 316025986 State of Ohio 204493 Research The Regents of The Univ of Michigan 2301 Commonwealth Blvd Ann Arbor MI 48105 386006809 State of Michig 30000 Medical Diagnosis The Regents of the University of California (Davis 1850 Research Park Drive Ste 300 Davis CA 95618 946036494 State of Califo 137500 Research The Regents of the University of California Los A 11000 Kinross Avenue Ste 211 Los Angeles CA 90095 946006143 State of Califo 665000 Research The Regents of the University of California San D 9500 Gilman Drive Dept 0934 La Jolla CA 92093 956006144 State of Califo 288491 Research The Regents of the University of California San F 3333 California Street Ste 315 San Francisco CA 94118 946036493 State of Califo 135360 Research The Regents of the University of Colorado 3100 Marine Street Room 479 Boulder CO 80309 846000555 State of Colora 212925 Research The Regents of the University of Michigan 3003 S State Street Room 1054 Ann Arbor MI 48109 386006309 State of Maryla 240630 Research The Research Foundation of SUNY 750 E Adams St 209 CAB Syracuse NY 13210 141368361 State of New Yo 185760 Research The Research Institute at Nationwide Children's Ho 700 Childrens Drive Columbus OH 43205 316056230 501(c)(3) 390600 Research The Scripps Research Institute 10550 North Torrey Pines Rd La Jolla CA 92037 330435954 501(c)(3) 240908 Research The Trustees of the University of Pennsylvania 3451 Walnut Street Franklin Bldg P Philadelphia PA 19104 231352685 State of Pennsy 437350 Research The Univ Of Texas Southwestern 5323 Harry Hines Blvd Dallas TX 75390 756002868 State of Texas 192000 Medical Diagnosis The University of Alabama at Birmingham 1720 2nd Avenue South AB 990 Birmingham AL 35294 636005396 State of Alabam 103133 Research The University of Iowa 2 Gilmore Hall Iowa City IA 52242 426004813 State of Iowa 431657 Research The University of North Carolina at Chapel Hill 104 Airport Drive Ste 2200 Campus Chapel Hill NC 27599 566001393 State of North 132000 Research The University of Texas Health Science Center at H Post Office Box 20036 Houston TX 77225 741761309 State of Texas 177374 Research Tivorsan Pharmaceuticals Inc 3 Davol Square A301 Providence RI 02903 770702642 C CORP 600000 Research Toledo Hospital 3949 Sunforest Ct Suite 203 Toledo OH 43623 344428256 501(c)(3) 40500 Medical Diagnosis Trustees of Columbia University 622 W 168th Street Box 16 New York NY 10032 133908657 501(c)(3) 176400 Medical Diagnosis Tufts Medical Center Hospital 800 Washington St Dept of PMR Boston MA 02111 043148378 501(c)(3) 22500 Medical Diagnosis UAB Division of Pediatric Neurology 1600 7th Ave South Ste 406 Birmingham AL 35233 630307306 501(c)(3) 18000 Medical Diagnosis UMPhysicians 2101 SE 6th St Ste 4-184 MMC 2641E Minneapolis MN 55455 411843943 501(c)(3) 157500 Medical Diagnosis Univ of MA Medical School Rms 5-752 55 Lake Avenue N Worcester MA 01655 043167352 State of Massac 21600 Medical Diagnosis Univ of North Carolina Hospitals 211 Friday Center Dr Suite 2033 Chapel Hill NC 27514 570935917 State of North 34200 Medical Diagnosis Univ Hosp Brooklyn SUNY-Downstate Med Ctr 450 Clarkson Ave Box 1213 Brooklyn NY 11203 141368361 State of New Yo 40500 Medical Diagnosis Univ of Arkansas for Medical Sciences One Hospital Drive DC05630 Little Rock AR 72205 716046242 State of Arkans 54000 Medical Diagnosis Univ of Miami Sponsored Programs PO Box 405803 Atlanta GA 30384 592579826 501(c)(3) 57600 Medical Diagnosis Univ of Nevada School of Medicine 2040 W Charleston Blvd Ste 300 Las Vegas NV 89102 880330858 State of Nevada 53100 Medical Diagnosis Univ of New Mexico Health Sciences Ctr MSC10 5620 1 University of New Mexi Albuquerque NM 87131 856000642 State of New Me 10800 Medical Diagnosis Univ of Rochester Medical Center 601 Elmwood Ave Box 673 Rochester NY 14642 160743209 501(c)(3) 94500 Medical Diagnosis Univ of TX Hlth Science Ctr MSRDP 7703 Floyd Curl Drive San Antonio TX 78284 741586031 State of Texas 74700 Medical Diagnosis Univ of Utah School of Medicine 175 North Medical Dr East 5th Floo Salt Lake City UT 84132 870480520 State of Utah 209836 Medical Diagnosis Univof Alabama Health SvcsFound 1720 7Th Ave South Suite 350 Spar Birmingham AL 35294 630649108 State of Alabam 75000 Medical Diagnosis Univof Mississippi Medical Center 2500 N State Street Jackson MS 39216 646008520 State of Missou 37500 Medical Diagnosis University Medical Associates 1 Poston Road Ste 350 Charleston SC 29407 571098556 State of South 35100 Medical Diagnosis University Medical Center 1501 N Campbell PO Box 245142 Tucson AZ 85724 942958258 501(c)(3) 63000 Medical Diagnosis University Neurology Inc ML525-231 Bethesda Ave Cincinnati OH 45267 311000664 501(c)(3) 70200 Medical Diagnosis University of California Regents (Sacramento) 4860 Y Street Ste 3850 Sacramento CA 95817 946036494 State of Califo 45000 Medical Diagnosis University of California Regents (San Francisco) 505 Parnassus Ave M 798 Box 0114 San Francisco CA 94143 946036493 State of Califo 108000 Medical Diagnosis University of Cincinnati 51 Goodman Drive PO Box 210222 Cincinnati OH 45221 316000989 State of Ohio 110000 Research University of Florida 219 Grinter Hall Gainesville FL 32611 596002052 State of Florid 100000 Research University of Iowa Hospitals & Clinics B5 Jessup Hall Iowa City IA 52242 426004813 State of Iowa 46800 Medical Diagnosis University of Louisville Physicians Inc 500 S Preston Street Louisville KY 40202 273645560 State of Kentuc 7000 Medical Diagnosis University of Miami 1120 NW 14th Avenue Suite 1306 Miami FL 33136 590624458 State of Florid 12195 Medical Diagnosis University of Nebraska Medical Center 600 S42nd St Omaha NE 68198 470049123 State of Nebras 36000 Medical Diagnosis University of Oregon 5219 University of Oregon Eugene OR 97403 481278531 State of Oregon 84600 Research University of Pittsburgh 123 University Place Pittsburgh PA 15213 250965591 State of Pennsy 84600 Research University of Pittsburgh 200 Lothrop Street Suite F875 Pittsburgh PA 15213 250965591 State of Pennsy 54000 Medical Diagnosis University of Puerto Rico Medical Sciences GPO 365067 1st Fl Univ Hospital San Juan PR 00936 660433762 State of Puerto 45000 Medical Diagnosis University of Rochester 518 Hylan Bldg Box 270140 Rochester NY 14627 160743209 501(c)(3) 772333 Research University of Tennessee Medical Center 1928 Alcoa Highway Medical Bldg B Knoxville TN 37920 311626179 State of Tennes 29600 Medical Diagnosis University of Utah 75 S 2000 East 211 RAB Salt Lake City UT 84112 876000525 State of Utah 125000 Research University of Virginia Health PO Box 9007 Charlottesville VA 22906 541124769 State of Virgin 57600 Medical Diagnosis University of Washington 4333 Brooklyn Ave NE Seattle WA 98195 916001537 State of Washin 622358 Research University of Washington MedCenter 1959 NE Pacific Street PO Box 25 Seattle WA 98195 916001537 State of Washin 63900 Medical Diagnosis University Physicians One Hospital Drive DC05630 Columbia MO 65212 436003859 State of Missou 12600 Medical Diagnosis University Physicians Inc PO Box 725 Aurora CO 80040 742161737 State of Colora 135000 Medical Diagnosis Univiversity of IL Board of Trustees PO Box 20787 Springfield IL 62708 376000511 State of Illino 63500 Medical Diagnosis UT Southwestern Medical Center 5323 Harry Hines Blvd Dallas TX 75390 756002868 State of Texas 182261 Research Valerion Therapeutics Inc 100 Main St Suite 110 Concord MA 01742 320246380 C CORP 1448461 Research Vanderbilt Department of Neurology Dept at 40303 - Center 4-01-400-5 Atlanta GA 31992 620476822 501(c)(3) 149000 Medical Diagnosis Via Christi Med Ctr St Francis Campus 707 N Emporia Wichita KS 67147 481172106 501(c)(3) 29250 Medical Diagnosis W Virginia University Research Corp 1 Medical Ctr Dr Ste 7500 Morgantown WV 26508 550665758 State of West V 32400 Medical Diagnosis Wake Forest Univ School of Medicine Medical Center Blvd WinstonSalem NC 27157 223849199 501(c)(3) 18000 Medical Diagnosis Washington UnivSchool of Medicine Box 8111 600 S Euclid Ave St Louis MO 63110 430653611 State of Missou 94500 Medical Diagnosis Washington University in St Louis 660 South Euclid Avenue Campus Box St Louis MO 63110 430653611 501(c)(3) 668356 Research Wesley Neurology Clinic PC 1211 Union Avenue Suite 400 Memphis TN 38104 581544781 501(c)(3) 55700 Medical Diagnosis White Plains Hospital & Medical Center Davis Avenue at East Post Road White Plains NY 10601 131740130 501(c)(3) 6300 Medical Diagnosis Wichita Falls Neurology Center PLLC 1600 7th Street Ste B Wichita Falls TX 76301 752151000 PARTNERSHIP 5400 Medical Diagnosis Yale University 800 Howard Ave PO Box 208071 New Haven CT 06520 060646973 501(c)(3) 16750 Medical Diagnosis 213 26 FORM 990, SCHEDULE I, PART I, LINE 2 UPON AWARDING A GRANT, BUT PRIOR TO DISBURSEMENT OF ANY FUNDS, MDA REQUIRYS THE FOLLOWING OF RESEARCH GRANTEES: RETURN OF THE SIGNED NOTICE OF AWARD AND SUBMISSION TO MDA OF CURRENT REGULATORY DOCUMENTS NECESSARY TO CONDUCT THE RESEARCH (INSTITUTIONAL REVIEW BOARD 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 true true X X X X X false true false false false false false false false Steven Derks President & CEO 441134 0 30000 0 0 0 66750 0 19299 0 557183 0 0 0 Julie Faber CPA CFO & Asst Treasurer 233810 0 0 0 0 0 0 0 6860 0 240670 0 0 0 Valerie A Cwik MD Asst. Sec/chief med scientific 200863 0 0 0 0 0 0 0 6881 0 207744 0 0 0 Gail Schmertz Kerner Esq Asst. Sec-Chief Legal OfficeR 191725 0 0 0 0 0 0 0 19272 0 210997 0 0 0 Peter Morgan EVP & COO 146589 0 0 0 0 0 0 0 19321 0 165910 0 0 0 Ann McNamara EVP-Chief Development OfficeR 215180 0 0 0 0 0 0 0 19299 0 234479 0 0 0 Steven Ford EVP Chief Communications & Mkt 203643 0 0 0 0 0 0 0 19299 0 222942 0 0 0 Kevin W Moran VP Program Development 156291 0 0 0 0 0 0 0 19321 0 175612 0 0 0 Robert M Grinsfelder EVP & CHIEF FIELD OP OFFICER 150981 0 0 0 0 0 0 0 12762 0 163743 0 0 0 John Walsh Div Chief Executive 147784 0 3000 0 0 0 0 0 19321 0 170105 0 0 0 Todd Hermon NVP Retail Partnerships 147514 0 0 0 0 0 0 0 12762 0 160276 0 0 0 Kimberly Bruna NVP & Community Engagement 146265 0 0 0 0 0 0 0 6881 0 153146 0 0 0 Bradley Barghols Div Chief Executive 138175 0 3000 0 0 0 0 0 19321 0 160496 0 0 0 Margaret Hodges Div Chief Executive 131463 0 0 0 0 0 0 0 19321 0 150784 0 0 0 PARTICIPATION IN, OR RECEIVED PAYMENT FROM RETIREMENT PLAN Steven M. Derks $66,750 457 B & F retirement plan Daniel G Fries MDA Board Member 301889 Pension Actuaries Service false BUSINESS TRANSACTIONS INVOLVING INTERESTED PERSONS (A) NAME OF PERSON: DANIEL G. FRIES (B) RELATIONSHIP BETWEEN INTERESTED PERSON AND ORGANIZATION: MDA BOARD MEMBER (C) AMOUNT OF TRANSACTION $301,889 (D) DESCRIPTION OF TRANSACTION: MDA BOARD MEMBER DAN FRIES IS EMPLOYED BY SIBSON CONSULTING AS A SENIOR VP, NEW YORK REGIONAL LEADER, AND IS NOT DIRECTLY COMPENSATED BY MUSCULAR DYSTROPHY ASSOCIATION, INC. SIBSON CONSULTING PROVIDES MDA'S PENSION ACTUARIES. (E) SHARING OF ORGANIZATION REVENUES? = NO X 18 56566 SELLING PRICE X MEDICAL EQUIPMENT 24 451099 APPRAISAL X BASEBALL TICKETS 4 240 APPRAISAL 25 false false false FORM 990, PART I, LINE 1 MDA IS THE NONPROFIT HEALTH AGENCY DEDICATED TO CURING MUSCULAR DYSTROPHY, ALS, AND RELATED DISEASES BY FUNDING WORLDWIDE RESEARCH. THE ASSOCIATION ALSO PROVIDES COMPREHENSIVE HEALTH CARE AND SUPPORT SERVICES, ADVOCACY, AND EDUCATION. FORM 990, PART VI, SECTION B, LINE 11 ALL BOARD MEMBERS WERE INVITED TO THE AUDIT COMMITTEE MEETING FOR THE FEDERAL FORM 990 REVIEW BY BDO BEFORE FILING WITH THE IRS. THOSE NOT IN ATTENDANCE WERE PROVIDED A COPY. FORM 990, PART VI, SECTION B, LINE 12C THE CONFLICT OF INTEREST POLICY IS MONITORED BY THE HUMAN RESOURCE DEPARTMENT IN CONJUNCTION WITH THE MDA LEGAL DEPARTMENT. FORM 990, PART VI, SECTION B, LINE 15 A COMPENSATION STUDY WAS DONE AND WAS APPROVED BY THE BOARD OF DIRECTORS. FORM 990, PART VI, SECTION C, LINE 19 GOVERNING DOCUMENTS AND THE CONFLICT OF INTEREST POLICIES ARE INTERNAL DOCUMENTS. COPIES OF THE AUDITED FINANCIAL STATEMENTS ARE AVAILABLE UPON REQUEST. OTHER CHANGES IN NET ASSETS - FORM 990, PART XI, LINE 9 CHANGE IN UNRECOGNIZED BENEFIT PLAN COSTS -23,205,152 FORM 990, PART XI, LINE 2C THERE HAVE BEEN NO CHANGES DURING THE YEAR IN THE PROCESS FOR OVERSIGHT OF THE AUDIT OF THE FINANCIAL STATEMENTS. FORM 990, PART VI, LINE 4: CHANGE TO BYLAWS The organization made several bylaws changes effective June 26, 2014 and October 23, 2014. Included in these changes was the creation of a Compensation Committee which has responsibility relating to the process for determining the compensation for the organization's Chief Executive Officer and other senior staff executives.