2017-11-10T06:29:58-06:00 2016-12-31 BDO USA LLP 8401 GREENSBORO DRIVE 800 MCLEAN VA 22102 990 2016-01-01 131665552 MUSCULAR DYSTROPHY ASSOCIATION INC % STEPHEN P EVANS VP FINANCE MUSC 3122605900 222 SOUTH RIVERSIDE PLAZA Suite 150 CHICAGO IL 606066000 JULIE FABER CFO 3122605900 2017-11-08 true Marc Berger P01871563 7038930600 162.249.80.3 54621820173145000005 2017-11-10 P 8D2263E1A0E0AD3C946283D6EB0E45EBE88746E7 D0AF2D51934D29625C5553385EBCC1F53B6119A8 2016 2018-03-14 21:41:22Z Lynn O'Connor Vos 222 S RIVERSIDE PL STE 1500 CHICAGO IL 60606 141730271 false X www.mda.org X 1950 NY SEE SCHEDULE O 18 18 1020 350000 369757 121934463 117071918 0 0 2737030 2325061 1366323 1263423 126037816 120660402 27847205 26545578 0 0 57706251 56846712 1438181 1302349 18760448 33819429 33386666 120811066 118081305 5226750 2579097 94245972 91932738 85826209 84003147 8419763 7929591 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 54809533 13412398 HEALTH CARE AND COMMUNITY SERVICES Individuals with muscular dystrophy, ALS and related life-threatening diseases are our moms and dads, sons and daughters, our friends, neighbors, co-workers and loved ones. At MDA, were proud to offer expert multidisciplinary care that will help manage disease symptoms to help optimize health and well-being from day one. Were committed to maximizing strength and mobility for families, promoting their quality of life and independence, breaking down barriers and making sure they know they are never alone in this fight. Individuals and families living with neuromuscular diseases face a variety of daily challenges. To help, MDA offers a comprehensive services program to help improve lives and support families from day one. Ranging from a nationwide network of state-of-the-art MDA Care Centers located at the nations top medical facilities to assistance with essential support services, MDA is here to help families today. Our heath care and community services accounted for $54,809,533 of our 2016 expenditures. As we strive to revolutionize care and support, here are some of the key ways we supported families in 2016: -More than 100,000 kids and adults and their families are registered with MDA to receive care, services, support and information through MDA Care Centers and other MDA local and national programs. -Provided comprehensive multidisciplinary care focused on families needs at more than 150 MDA Care Centers through nearly 50,000 visits. -Hosted more than 340 events and activities, including support groups, educational events and family gatherings, for families to learn, connect and address daily needs and challenges. -Offered 71 weeklong, barrier-free summer camps for nearly 3,800 children - at no cost to their families - to help them build self-confidence and independence so they can live unlimited. -Provided more than 3,000 gently used assistive devices to kids and adults to help them maintain mobility and independence through MDAs equipment assistance program. -Supported young adults through MDAs online tools and services, helping them navigate education, employment and independent living through resources, programming and community connections. -Helped 10,000 individuals with the answers and assistance they needed through its National Resource Center, which connects individuals impacted by neuromuscular disease with trained one-on-one specialists for resources and support. Additionally, through MDAs public policy and advocacy program, were working together to ensure that policymakers understand the needs of the neuromuscular disease community. 15992994 13133180 RESEARCH Every day, children are born with muscular dystrophy and related life-threatening diseases affecting muscles that take away the ability to walk, move, hug, talk and even breathe. Similarly, adults are facing devastating diseases like ALS that cause nerves to die and muscles to deteriorate, resulting in loss of mobility and other severe health complications. For these kids and adults, there are currently few treatments and no cures. MDAs 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 focusing on making breakthroughs across diseases. What we learn on the frontlines in one area can potentially have positive impacts in others. In 2016, MDA spent $15,992,994 on research projects aimed at accelerating urgently needed treatments and cures for the families we serve. MDAs long-term investment in research has contributed to dozens of clinical trials now underway for novel drugs and therapies, and led to the approvals in 2016 of Exondys 51 to treat some forms of Duchenne muscular dystrophy and Spinraza to treat spinal muscular atrophy. On the heels of this progress, more new drugs in development to treat neuromuscular diseases are expected during the next five years than in the previous 50. Some of the areas where we see the greatest potential are: -Gene targeting therapies (replacement, exon skipping, mutation read through and editing) -Stem cell therapies -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 In 2016, MDA awarded 70 new research grants to leading scientists around the globe. MDA's Research and MVP Advisory Committees - whose members are among the nation's foremost scientists, physicians and experts in the field of neuromuscular disease and the drug development industry - carefully evaluate all grant proposals submitted and recommend the best to MDAs Board of Directors for approval. Reports on ongoing progress in MDAs efforts to speed the development of treatments and cures, including the status of human clinical trials to test potential therapies, can be found at mda.org/research. 15274561 PROFESSIONAL AND PUBLIC HEALTH EDUCATION Muscular dystrophy, ALS and related 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 health education is one of the many ways in which MDA is working to save and improve lives. In 2016, MDA spent $15,274,561 to provide professional and public health education. We promoted a deeper understanding and an awareness to rally and inspire action through a variety of innovative strategies, including the following: -Delivered timely information on mda.org, which is recognized internationally as a key source of information about neuromuscular diseases. -Every month, nearly 300,000 visitors come to mda.org and related MDA websites to find the information and resources they need - thats about 3.4 million people a year. -Placed thousands of documented news stories about MDAs mission with network, syndicated and local broadcast outlets, print news publications and online, including frequent social media postings through Facebook, Twitter and Instagram. -Delivered critical information on research, care and independent living through MDAs award-winning national Quest Magazine, which has a readership of nearly 800,000 in print and online combined. -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. -Launched its blog Strongly to bring together the stories and voices of individuals and families across the MDA community, publishing more than 200 stories that reached more than 80,000 people. MDA used social media to promote Strongly stories and other content of interest to MDA families and supporters, reaching more than 20 million people. -Hosted the pre-eminent gathering of clinicians, allied health professionals and scientific experts specializing in neuromuscular disease research and clinical care at the 2016 MDA Clinical Conference in Arlington, Va., bringing together the nations best and brightest experts to share information and learn about new approaches and techniques for clinical management of neuromuscular disorders, to hear about the latest information regarding clinical trial results and to engage in dialogue and networking among peers. 86077088 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 839 25 true 1020 true true true false false false false true true true 11 false false false X 18 18 false false false 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 X STANLEY H APPEL MD DIRECTOR 1.0 0.0 X 0 0 0 C THOMAS CASKEY MD 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 STEVE FARELLA DIRECTOR 1.0 0.0 X 0 0 0 DANIEL G FRIES DIRECTOR 1.0 0.0 X 0 0 0 GOVERNOR BRAD HENRY DIRECTOR 1.0 0.0 X 0 0 0 R RODNEY HOWELL MD CHAIRMAN 5.0 0.0 X X 0 0 0 DAVE HUTTON DIRECTOR 1.0 0.0 X 0 0 0 LOUIS M KUNKEL PHD DIRECTOR 1.0 0.0 X 0 0 0 OLIN F MORRIS DIRECTOR 1.0 0.0 X 0 0 0 PATRICIA NAZEMETZ DIRECTOR 1.0 0.0 X 0 0 0 CHRISTOPHER J ROSA PHD VICE CHAIR 2.0 0.0 X X 0 0 0 MIKE ROWLETT DIRECTOR 1.0 0.0 X 0 0 0 CHARLES D SCHOOR ESQ SECRETARY 2.0 0.0 X X 0 0 0 MARK SMITH DIRECTOR 1.0 0.0 X 0 0 0 JOHN TOGNINO DIRECTOR 1.0 0.0 X 0 0 0 KRISTINE WELKER DIRECTOR 1.0 0.0 X 0 0 0 VICTOR WRIGHT TREASURER 2.0 0.0 X X 0 0 0 LILIAN WU PHD DIRECTOR 1.0 0.0 X 0 0 0 STEVEN M DERKS PRESIDENT & CEO 50.0 0.0 X 475679 0 87394 JULIE FABER CPA 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 U.S. GAAP PROVIDES 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 ITS FEDERAL AND STATE EXEMPT ORGANIZATION TAX RETURNS ARE MORE LIKELY THAN NOT TO BE SUSTAINED UPON EXAMINATION. THE ASSOCIATION'S RETURNS FOR YEARS ENDED DECEMBER 31, 2016, 2015, 2014 AND 2013 ARE ALSO OPEN FOR 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 254370 Europe (Including Iceland and Greenland) Program Services GRANTS TO RECIPIENTS 984626 North America Program Services GRANTS TO RECIPIENTS 822305 South America Program Services GRANTS TO RECIPIENTS 98000 2159301 2159301 East Asia and the Pacific Research 254370 check Europe (Including Iceland and Greenland) research 984626 check North America research 822305 check South America research 98000 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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Hall Reno NV 89557 886000024 State of NV 14353 Research American Family Children's Hospital 21 North Park ST Madison WI 53715 396006492 501(c)(3) 25000 Medical Diagnosis Augusta UNIV Health 1120 15th ST Augusta GA 30912 582144788 501(c)(3) 18000 Medical Diagnosis Beaumont Hospitals 3555 W 13 Mile Rd Royal Oak MI 48073 381459362 N/A 12500 Medical Diagnosis Buffalo General Medical CTR 100 High ST Buffalo NY 14203 161359213 501(c)(3) 13500 Medical Diagnosis Childrens Hospital Los Angeles 4650 Sunset Blvd Los Angeles CA 90027 951690977 501(c)(3) 25000 Medical Diagnosis Children's National Medical CTR 111 Michigan NW Washington DC 20010 530196580 501(c)(3) 32400 Medical Diagnosis Houston Methodist Hosptial 6560 Fannin ST Houston TX 77030 870721923 501(c)(3) 132300 Medical Diagnosis IU Health Neuroscience CTR 355 W 16th ST Indianapolis IN 46202 351955872 501(c)(3) 22500 Medical Diagnosis IU Health Riley Hospital for Children 355 West 16th Indianapolis IN 46202 351955872 501(c)(3) 22500 Medical Diagnosis Le Bonheur Children's Hospital 50 Peabody Pl Memphis TN 38103 621872938 501(c)(3) 80000 Medical Diagnosis MDA Care CTR at Ponce Health Sciences Univ PO Box 7004 Ponce PR 00732 660379122 501(c)(3) 36000 Medical Diagnosis MDA Care CTR at Seattle Children's Hospital 4800 Sand Point Way Seattle WA 98105 910564748 501(c)(3) 49050 Medical Diagnosis MDA Care CTR at UNIV of Virginia PO Box 9007 Charlottesville VA 22906 541124769 State of VA 57600 Medical Diagnosis MDA Clinic & MDAALS CTR at Carolinas Med 1221 E Morehead ST Charlotte NC 28204 566060481 501(c)(3) 90000 Medical Diagnosis MDA Clinic & MDAALS CTR at Ohio State 2006 Kenny Rd Columbus OH 43212 316025986 State of OH 61200 Medical Diagnosis MDA Clinic & MDAALS CTR at Tx Neurology 6301 Gaston Ave Dallas TX 75214 752654757 501(c)(3) 9000 Medical Diagnosis MDA Clinic & MDAALS UNIV Colorado PO Box 110247 Aurora CO 80042 742161737 State of CO 135000 Medical Diagnosis MDA Clinic & MDAALS UNIV New Mexico 1 Univ of New Mexico Albuquerque NM 87131 856000642 State of NM 30600 Medical Diagnosis MDA Clinic & MDAALS CTR at UMASS 55 Lake AVE N Worcester MA 01655 043167352 State of MA 21600 Medical Diagnosis MDA Clinic & MDAALS CTR at Yale University 800 Howard Ave New Haven CT 06520 060646973 501(c)(3) 37000 Medical Diagnosis MDA Clinic and MDAALS St Joseph's Hosp 350 W Thomas Rd Phoenix AZ 85013 860096787 501(c)(3) 60000 Medical Diagnosis MDA Clinic at Albany Medical CTR Hospital 47 New Scotland Ave Albany NY 12208 141338310 501(c)(3) 18900 Medical Diagnosis MDA Clinic at Alfred I Dupont Hospital 1600 Rockland Rd Wilmington DE 19899 590634433 501(c)(3) 49500 Medical Diagnosis MDA Clinic at Baptist Hospital East 4000 Kresge Way Louisville KY 40207 610444707 501(c)(3) 11700 Medical Diagnosis MDA Clinic at Benefis Healthcare Fdn PO Box 7008 Great Falls MT 59406 810480587 501(c)(3) 8100 Medical Diagnosis MDA Clinic at Billings Clinic PO Box 31031 Billings MT 59107 810407289 501(c)(3) 11700 Medical Diagnosis MDA Clinic at Board of Trustees of SIU PO Box 19616 Springfield IL 62794 376005961 501(c)(3) 15000 Medical Diagnosis MDA Clinic at Brigham & Women's Hospital 41 AVE Boston MA 02115 042312909 501(c)(3) 32580 Medical Diagnosis MDA Clinic at CA Pac Med CTR 2324 Sacramento ST San Francisco CA 94115 940562680 501(c)(3) 90000 Medical Diagnosis MDA Clinic at Carilion Medical CTR 3 Riverside Circle Roanake VA 24016 540506332 501(c)(3) 20000 Medical Diagnosis MDA Clinic at Children's Hosp Central Ca 9300 Valley Childrens Pl Madera CA 93636 941294954 501(c)(3) 9000 Medical Diagnosis MDA Clinic at Children's Clinics Rehab Svcs 2600 North Wyatt DR Tucson AZ 85712 860667510 501(c)(3) 55800 Medical Diagnosis MDA Clinic at Children's Healthcare of Atl 1687 Tullie Circle Atlanta GA 30329 581947689 501(c)(3) 27000 Medical Diagnosis MDA Clinic at Children's Hosp Philadelphia 34th ST Civic Ctr Philadelphia PA 19104 231352166 501(c)(3) 90000 Medical Diagnosis MDA Clinic at Children's Hospital Boston 300 Longwood Ave Boston MA 02115 222678594 501(c)(3) 27000 Medical Diagnosis MDA Clinic at Children's Hospital Med CTR 3333 Burnet Ave Cincinnati OH 45229 310833963 501(c)(3) 54450 Medical Diagnosis MDA Clinic at Children's Hospital 455 S Main ST Orange CA 92868 952321788 501(c)(3) 5400 Medical Diagnosis MDA Clinic at Children's Hosp Pittsburgh 4401 Penn Ave Pittsburgh PA 15224 250402510 501(c)(3) 18900 Medical Diagnosis MDA Clinic at Children's Hospital of Wisc 9200 w Wisconsin Ave Milwaukee WI 53226 390806261 501(c)(3) 7200 Medical Diagnosis MDA Clinic at Children's Hosp New Orleans 200 Henry Clay AVE New Orleans LA 70118 720467503 501(c)(3) 9000 Medical Diagnosis MDA Clinic at Children's Med CTR 2350 Stemmons Frwy Dallas TX 75207 750800628 501(c)(3) 60000 Medical Diagnosis MDA Clinic at Clinical Neurology 4221 S Western Oklahoma City OK 73109 412141136 501(c)(3) 107100 Medical Diagnosis MDA Clinic at Columbia UNIV Med CTR 622 W 168th St New York NY 10032 133908657 501(c)(3) 132300 Medical Diagnosis MDA Clinic at Community Medical CTRs 1855 Folsom San Francisco CA 94143 946036493 501(c)(3) 25000 Medical Diagnosis MDA Clinic at Cook Children's Medical CTR 901 Seventh AVE Ft Worth TX 76104 752051646 501(c)(3) 8100 Medical Diagnosis MDA Clinic at Covenant Health System 3615 19th St Lubbock TX 79408 752765566 501(c)(3) 23600 Medical Diagnosis MDA Clinic at Dartmouth-Hitchcock Med CTR One Medical CTR Dr Lebanon NH 03756 020222140 501(c)(3) 22500 Medical Diagnosis MDA Clinic at Dean Clinic 1808 W Beltline Hwy Madison WI 53713 391128616 501(c)(3) 25000 Medical Diagnosis MDA Clinic at Dent Neurologic Group LLP 3980 Sheridan Dr Amherst NY 14226 161582336 501(c)(3) 12600 Medical Diagnosis MDA Clinic at Drexel Neurological Asso 245 N 15th St Philadelphia PA 19102 754022380 501(c)(3) 94950 Medical Diagnosis MDA Clinic at Driscoll Children's Hospital 3533 S Alameda ST Corpus Christi TX 78411 742577746 501(c)(3) 6000 Medical Diagnosis MDA Clinic at Duke UNIV Medical CTR Box 3069 Durham NC 27710 561029437 501(c)(3) 81000 Medical Diagnosis MDA Clinic at Eastern Maine Medical CTR 489 State ST Bangor ME 04401 010211501 501(c)(3) 10800 Medical Diagnosis MDA Clinic at Elkhart Clinic LLC 303 S Nappanee Elkhart IN 46514 351911857 501(c)(3) 14400 Medical Diagnosis MDA Clinic at Fairview UNIV Medical CTR 2101 SE 6th ST Minneapolis MN 55455 411843943 501(c)(3) 97500 Medical Diagnosis MDA Clinic at Fletcher Allen Health Care CTR 1 South Prospect ST Burlington VT 05401 030219303 501(c)(3) 6300 Medical Diagnosis MDA Clinic at Froedtert Mem Luth 9200 W Wisconsin AVe Milwaukee WI 53226 390806261 501(c)(3) 23400 Medical Diagnosis MDA Clinic at Geisinger Medical CTR 100 Academy AVE Danville PA 17822 240795959 501(c)(3) 10800 Medical Diagnosis MDA Clinic at Georgetown Univ 4000 Resv Rd NW Washington DC 20057 530196603 501(c)(3) 20700 Medical Diagnosis MDA Clinic at Gillette Children's Spec PO Box 1450 Minneapolis MN 55485 363379150 501(c)(3) 60000 Medical Diagnosis MDA Clinic at Glendale 28595 Orch Lk Rd Farmington Hills MI 48334 381889896 501(c)(3) 63000 Medical Diagnosis MDA Clinic at Hamot 2nd Century Fund 302 French ST Erie PA 16507 251400909 501(c)(3) 9000 Medical Diagnosis MDA Clinic at Hershey Medical CTR 500 University DR Hershey PA 17033 251854772 501(c)(3) 73800 Medical Diagnosis MDA Clinic at Hosp Espanol De Auxilio Mutuo PO Box 191227 Hato Rey PR 00919 660486907 501(c)(3) 49500 Medical Diagnosis MDA Clinic at Hospital For Special Care 2150 Corbin AVE New Britain CT 06053 060646766 501(c)(3) 62600 Medical Diagnosis MDA Clinic at Hospital For Special Surgery 535 E 70th St New York NY 10021 131624135 501(c)(3) 80000 Medical Diagnosis MDA Clinic at Hospital of The UNIV Penn 3400 Spruce St Philadelphia PA 19104 231352685 State of PA 70110 Medical Diagnosis MDA Clinic at John Hopkins Univ 600 NWolfe St Baltimore MD 21287 320061260 501(c)(3) 195300 Medical Diagnosis MDA Clinic at KUMC Research Inst 6003 Wescoe Kansas City KS 66160 481108830 501(c)(3) 93600 Medical Diagnosis MDA Clinic at Loma Linda University 11175 Campus ST Loma Linda CA 92354 330364239 501(c)(3) 26100 Medical Diagnosis MDA Clinic at Louisiana State Univ 1501 Kings Highway Shreveport LA 71130 720702002 State of LA 27000 Medical Diagnosis MDA Clinic at LSU School of Medicine 433 Bolivar St New Orleans LA 70112 721304948 501(c)(3) 33300 Medical Diagnosis MDA Clinic at Lucile Salter Packard Child Hosp 4100 Bohannon DR Menlo Park CA 94025 770003859 501(c)(3) 43000 Medical Diagnosis MDA Clinic at Maine Medical CTR 49 Spring ST Scarborough ME 04074 010238552 501(c)(3) 14850 Medical Diagnosis MDA Clinic at Marshfield Clinic 1000 North Oak AVE Marshfield WI 54449 390452970 501(c)(3) 10800 Medical Diagnosis MDA Clinic at Mayo Clinic Jacksonville 4500 San Pablo Rd Jacksonville FL 32224 593337028 501(c)(3) 27000 Medical Diagnosis MDA Clinic at Medical UNIVof South Carolina 1 Poston Road Charleston SC 29407 571098556 State of SC 26325 Medical Diagnosis MDA Clinic at Metrohealth Medical CTR PO Box 73122 Cleveland OH 44193 346004382 501(c)(3) 36000 Medical Diagnosis MDA Clinic at Michigan State University 788 Service Rd East Lansing MI 48824 386005984 State of MI 27000 Medical Diagnosis MDA Clinic at Montefiore Medical CTR 3351 Steuben Ave Bronx NY 10467 133908657 501(c)(3) 62100 Medical Diagnosis MDA Clinic at Nationwide Children's Hsptl 555 South 18th St Columbus OH 43205 311036370 501(c)(3) 28800 Medical Diagnosis MDA Clinic at Neurology Associates 1301 S Cliff Ave Sioux Falls SD 57105 460364889 501(c)(3) 16200 Medical Diagnosis MDA Clinic at Neurology Assoc of Arlington 2800 E Broad ST Mansfield TX 76063 752405825 501(c)(3) 24300 Medical Diagnosis MDA Clinic at Northwestern Med Fdn 710 N Lake Shore Dr Chicago IL 60611 393097297 501(c)(3) 62000 Medical Diagnosis MDA Clinic at NYU Med Ctr 15th Flr 240 E 38th St New York NY 10016 133971298 501(c)(3) 72900 Medical Diagnosis MDA Clinic at Olive View - UCLA Medical CTR 14445 Olive View DR Sylmar CA 91342 952249539 501(c)(3) 22500 Medical Diagnosis MDA Clinic at Oregon Health & Science Univ 3181 SW Sam Jksn Pk Rd Portland OR 97201 931176109 501(c)(3) 36000 Medical Diagnosis MDA Clinic at OSF Med Group Neurology PO Box 1712 Peoria IL 61656 370662569 501(c)(3) 16000 Medical Diagnosis MDA Clinic at Prevea Clinic PO Box 19070 Green Bay WI 54307 391839349 501(c)(3) 18000 Medical Diagnosis MDA Clinic at Rapides 211 Fourth ST Alexandria LA 71301 720702002 State of LA 9000 Medical Diagnosis MDA Clinic at Regents of The UNIV of CA 710 Westwood Plza Los Angeles CA 90095 956006143 State of CA 108000 Medical Diagnosis MDA Clinic at Rhode Island Hospital 593 Eddy St Providence RI 02903 050258954 501(c)(3) 16200 Medical Diagnosis MDA Clinic at Round Rock Medical CTR 2400 Round Rock Ave Round Rock TX 78681 742781812 501(c)(3) 13500 Medical Diagnosis MDA Clinic at Sacred Heart Hospital 1255 Hilyard St Eugene OR 97440 931084906 501(c)(3) 13500 Medical Diagnosis MDA Clinic at Sarasota Mem Hosp 1700 Tamiami Trail Sarasota FL 34239 596012500 501(c)(3) 24000 Medical Diagnosis MDA Clinic at Sentara Norfolk Gen Hosp 6015 Poplar Hall Dr Norfolk VA 23502 541547408 501(c)(3) 22500 Medical Diagnosis MDA Clinic at Shriners Hosp 101 SW Sam Jksn pk rd Portland OR 97239 362193608 501(c)(3) 9000 Medical Diagnosis MDA Clinic at Shriners Hosp For Children 2211 N Oak Park AVE Chicago IL 60707 362193608 501(c)(3) 25000 Medical Diagnosis MDA Clinic at Shriners Hosp Spokane 911 W 5th AVE Spokane WA 99204 362193608 501(c)(3) 7200 Medical Diagnosis MDA Clinic at Spartanburg Neurological Svcs 362 N Pine ST Spartanburg SC 29302 570902952 501(c)(3) 8100 Medical Diagnosis MDA Clinic at Specially For Children 1301 Barb Jordan Blvd Austin TX 78723 742800601 501(c)(3) 13500 Medical Diagnosis MDA Clinic at St Anthony's Neurology Group 300 S Park Place Blvd Clearwater FL 33759 743168197 501(c)(3) 22500 Medical Diagnosis MDA Clinic at St Charles Hosp And Rehab CTR 200 Belle Terre Rd Port Jefferson NY 11777 412076312 501(c)(3) 18000 Medical Diagnosis MDA Clinic at St Francis Community Health CTR PO Box 1901 Monroe LA 71210 720408970 501(c)(3) 11250 Medical Diagnosis MDA Clinic at St Joseph's Children's Hosp 2700 W Dr Mlk Jr Blvd Tampa FL 33607 591100828 501(c)(3) 31958 Medical Diagnosis MDA Clinic at St Luke's Rehabilitation Institute S 711 Cowley Spokane WA 99202 911307555 501(c)(3) 18000 Medical Diagnosis MDA Clinic at St Peter's Hosp Fdn 319 S Manning Blvd Albany NY 12208 222262982 501(c)(3) 70000 Medical Diagnosis MDA Clinic at SUNY Downstate Med Ctr 450 Clarkson Ave Brooklyn NY 11203 141368361 501(c)(3) 40500 Medical Diagnosis MDA Clinic at Texas Children's Hospital PO Box 300327 Houston TX 77230 741100555 501(c)(3) 18000 Medical Diagnosis MDA Clinic at The Children's Hosp Aurora 13123 E 16th Ave Aurora CO 80045 840166760 501(c)(3) 52200 Medical Diagnosis MDA Clinic at The Children's Hsp Birmingham 1600 7th Ave S Birmingham AL 35233 630307306 501(c)(3) 18000 Medical Diagnosis MDA Clinic at The Duluth Clinic Ltd 400 E 3rd ST Duluth MN 55805 410883623 501(c)(3) 6750 Medical Diagnosis MDA Clinic at The Regents of The Univ of MI 2301 Commonwlth Blvd Ann Arbor MI 48105 386006809 State of MI 30000 Medical Diagnosis MDA Clinic at The Regents of The Univof CA 200 S Manchester AVE Orange CA 92868 952226406 State of CA 66000 Medical Diagnosis MDA Clinic at Toledo Children's Hosp 3949 Sunforest Ct Toledo OH 43623 344428256 501(c)(3) 40500 Medical Diagnosis MDA Clinic at U of A Health Sciences CTR 1501 N Campbell Tucson AZ 85724 942958258 501(c)(3) 31500 Medical Diagnosis MDA Clinic at UC Regents 4860 Y St Sacramento CA 95817 946036494 State of CA 45000 Medical Diagnosis MDA Clinic at UC Regents 675 Nelson Ris Lane San Francisco CA 94158 946036493 501(c)(3) 108000 Medical Diagnosis MDA Clinic at UNC Hospitals 211 Friday CTR Dr Chapel Hill NC 27514 570935917 State of NC 34200 Medical Diagnosis MDA Clinic at Univ of Arkansas 4301 W Markham Little Rock AR 72205 716046242 State of AR 54000 Medical Diagnosis MDA Clinic at Univ of Miami 1150 NW 14th St STE 701 Miami FL 33136 592579826 State of GA 57600 Medical Diagnosis MDA Clinic at Univ of Nevada School of Med 2040 W Charleston Blvd Las Vegas NV 89102 880330858 State of NV 22500 Medical Diagnosis MDA Clinic at Univ of New Mexico 1 Univ of New Mexico Albuquerque NM 87131 856000642 State of NM 10800 Medical Diagnosis MDA Clinic at Univ of Rochester Med ctr 601 Elmwood Ave Rochester NY 14642 160743209 State of NY 94500 Medical Diagnosis MDA Clinic at Univ of Utah School of Med 175 North Med Dr Salt Lake City UT 84132 870480520 State of UT 67500 Medical Diagnosis MDA Clinic at UNIV Neurology 231 Bethesda Ave Cincinnati OH 45267 311000664 State of OH 70200 Medical Diagnosis MDA Clinic at UNIV of Iowa Hospital B5 Jessup Hall Iowa City IA 52242 426004813 State of IA 46800 Medical Diagnosis MDA Clinic at UNIV of Missouri One Hospital DR Columbia MO 65212 436003859 State of MO 12600 Medical Diagnosis MDA Clinic at UNIV of Nebraska Medical CTR 600 S42nd St Omaha NE 68198 470049123 State of NE 36000 Medical Diagnosis MDA Clinic at UNIV Pittsburgh 200 Lothrop ST Pittsburgh PA 15213 250965591 State of PA 54000 Medical Diagnosis MDA Clinic at UNIV of Puerto Rico 400 Roosevelt Ave San Juan PR 00918 660433762 State of Puerto 45000 Medical Diagnosis MDA Clinic at UNIV of Tennessee Medical CTR 1928 Alcoa Hgwy Knoxville TN 37920 311626179 State of TN 12600 Medical Diagnosis MDA Clinic at UNIV Wash Med CTR 1959 NE Pacific ST Seattle WA 98195 916001537 State of WA 63900 Medical Diagnosis MDA Clinic at Vanderbilt Dept Neurology PO Box 121236 Dallas TX 75312 620476822 501(c)(3) 149000 Medical Diagnosis MDA Clinic at W Virginia UNIV Research Corp 1 Medical Ctr Dr Morgantown WV 26508 550665758 State of WV 32400 Medical Diagnosis MDA Clinic Wake Forest Univ School of Med Medical CTR Blvd WinstonSalem NC 27157 223849199 State of NC 18000 Medical Diagnosis MDA Clinic at Washington Univ School of Med 600 S Euclid Ave St Louis MO 63110 430653611 State of MO 126000 Medical Diagnosis MDA Clinic at White Plains Hospital Davis AVE White Plains NY 10601 131740130 501(c)(3) 12600 Medical Diagnosis MDA ClinicUniv of IL PO Box 20787 Springfield IL 62708 376000511 State of IL 63500 Medical Diagnosis MDAALS CTR & Clinic at Univ of TX 5323 Harry Hines Blvd Dallas TX 75390 756002868 State of TX 162000 Medical Diagnosis MDAALS CTR at Mass General Hospital PO Box 414876 Boston MA 02241 042697983 501(c)(3) 123300 Medical Diagnosis Mercy Clinic Neurology 2115 S Fremont Springfield MO 65804 440552485 501(c)(3) 19000 Medical Diagnosis Mercy Health Saint Mary's 200 Jefferson SE Grand Rapids MI 49503 382113393 501(c)(3) 40000 Medical Diagnosis Nemours Children's Clinic Orlando 10140 Cent Pkwy Jacksonville FL 32246 590634433 501(c)(3) 100000 Medical Diagnosis Neurology LLPC 1919 S Wheeling AVE Tulsa OK 74104 731502318 N/A 25000 Medical Diagnosis Pediatric MDA Care CTR at Greenville 200 Patewood DR Greenville SC 29615 576007863 501(c)(3) 8100 Medical Diagnosis Phoenix Children's Hospital 1919 E Thomas Rd Phoenix AZ 85016 860422559 501(c)(3) 12000 Medical Diagnosis Rady Children's Hospital - San Diego 3020 Childrens Way San Diego CA 92123 951691313 501(c)(3) 45000 Medical Diagnosis Rutgers New Jersey Medical School 65 Davidson RD Piscataway NJ 08854 351911857 501(c)(3) 78300 Medical Diagnosis Sanford Clinic 720 4th ST North Fargo ND 58122 911770748 501(c)(3) 17100 Medical Diagnosis Spectrum Health Foundation 100 Michigan NE Grand Rapids MI 49503 382752328 501(c)(3) 20000 Medical Diagnosis St Luke's Health System 190 E Bannock Boise ID 83712 820161600 501(c)(3) 20000 Medical Diagnosis SUNY Upstate Medical University 750 E Adams St Syracuse NY 13210 166066240 501(c)(3) 45900 Medical Diagnosis The Queen's Medical CTR 1301 Punchbowl ST Honolulu HI 96813 990073524 501(c)(3) 25000 Medical Diagnosis Tufts Medical CTR Physicians Organization 800 Washington St Boston MA 02111 043148378 501(c)(3) 22500 Medical Diagnosis UF Health 302 Tigert Hall Gainesville FL 32611 596002052 State of FL 27410 Medical Diagnosis UNIV of Louisville Physicians Inc 500 S Preston ST Louisville KY 40202 273645560 State of KY 7000 Medical Diagnosis UNIV of Texas Health Science CTR 7703 Floyd Curl DR San Antonio TX 78284 741586031 State of TX 74700 Medical Diagnosis Via Christi Hospitals Wichita Inc 707 N EmporiA Wichita KS 67147 481172106 501(c)(3) 29250 Medical Diagnosis Virginia Commonwealth Univ PO Box 980599 Richmond VA 23298 541581185 501(c)(3) 40000 MEDICAL DIAGNOSIS 247 5 FORM 990, SCHEDULE I, 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. X true true X X X X X X false true false false false false false false false STEVEN M DERKS PRESIDENT & CEO 455679 0 20000 0 0 0 66750 0 20644 0 563073 0 0 0 JULIE FABER CPA ASST. TREASURER & CFO 239264 0 0 0 0 0 0 0 6461 0 245725 0 0 0 VALERIE A CWIK MD ASST. SEC.CHIEF MED SCIENTIFIC 240003 0 0 0 0 0 0 0 6461 0 246464 0 0 0 ROBERT M GRINSFELDER EVP - CHIEF FIELDS OPS OFFICER 212691 0 0 0 0 0 0 0 10066 0 222757 0 0 0 STEVEN G FORD EVP-CHIEF COMM/MRKT OFFICER 209009 0 0 0 0 0 0 0 16009 0 225018 0 0 0 EILEEN M TIMMINS PHD EVP - CHIEF PEOPLE OFFICER 186859 0 0 0 0 0 0 0 9668 0 196527 0 0 0 ANN MCNAMARA EVP - CHIEF DEV. OFFICER 173286 0 0 0 0 0 0 0 620 0 173906 0 0 0 JOHN WALSH DIVISION CHIEF EXECUTIVE 172298 0 0 0 0 0 0 0 16009 0 188307 0 0 0 JEANNINE M HOULIHAN CHIEF INFORMATION OFFICER 193651 0 10000 0 0 0 0 0 2372 0 206023 0 0 0 GRACE K PAVLATH PHD SR. VP. - SCIENTIFIC PROG DIR 189935 0 0 0 0 0 0 0 10066 0 200001 0 0 0 GAIL SCHMERTZ KERNER ESQ CHIEF LEGAL OFFICER 188785 0 0 0 0 0 0 0 16078 0 204863 0 0 0 NANCY STINSON HARRIS NVP OF CORP PARTNERSHIP 187637 0 0 0 0 0 0 0 7495 0 195132 0 0 0 MARGARET HODGES DIVISION CHIEF EXECUTIVE 144248 0 0 0 0 0 0 0 16009 160257 0 0 0 schedule J, Part I, Line 4b: Steven M. Derks $66,750 457(B) & 457(F) retirement plan Daniel G Fries MDA Board Member 195732 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 $195,732 (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 1 X 11 28241 SELLING PRICE X MEDICAL EQUIPMENT 24 167894 APPRAISAL 23 false true 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 11B ALL BOARD MEMBERS WERE PROVIDED A COPY OF THE FEDERAL FORM 990 BEFORE FILING WITH THE IRS. FORM 990, PART VI, SECTION B, LINE 12C THE CONFLICT OF INTEREST POLICY IS MONITORED BY THE HUMAN RESOURCE DEPARTMENT IN CONJUNCTION WITH LEGAL. FORM 990, PART VI, SECTION B, LINES 15A AND 15B 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. FORM 990, PART XI, LINE 9 OTHER CHANGES IN NET ASSETS: CHANGE IN UNRECOGNIZED BENEFIT PLAN COSTS (5,398,775)