2016-08-12T16:05:12-05:00 2015-12-31 BDO USA LLP 8401 GREENSBORO DRIVE SUITE 800 MCLEAN VA 22102 990 2015-01-01 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 2016-08-12 true Marc Berger P01871563 7038930600 2015 2016-12-15 16:53:06Z STEVEN M DERKS 222 S RIVERSIDE PL STE 1500 CHICAGO IL 60606 173396957 false X www.mda.org X 1950 NY SEE SCHEDULE O 20 20 1085 1500000 258243 135174690 121934463 0 0 3594376 2737030 1602169 1366323 140371235 126037816 29432206 27847205 0 0 60138523 57706251 540001 1438181 19740595 41404992 33819429 131515722 120811066 8855513 5226750 97787518 94245972 91626238 85826209 6161280 8419763 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 56468364 13943137 HEALTH CARE AND COMMUNITY SERVICES People with muscular dystrophy and related diseases are our moms and dads, sons and daughters, our friends, neighbors, co-workers and loved ones. At MDA, were proud to offer the medical expertise and care that will help manage disease symptoms so that health and well-being will be optimized. Were committed to maximizing strength and mobility for 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 nations top medical facilities to assistance with essential support services, MDA is here to help families today. Our health care and community services accounted for $56,468,364 of our 2015 expenditures. As we strive to revolutionize care and support, here are some of the key ways we supported families in 2015: - Provided comprehensive care focused on families needs at more than 150 MDA Care Centers through nearly 50,000 visits - Hosted more than 140 critical support groups for families to address daily needs and challenges - Offered nearly 75 weeklong summer camps for more than 3,800 children to help build self-confidence and independence and remove barriers of everyday life - Provided equipment repairs and support to help families maintain independence - 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 MDAs public policy and advocacy program, weve made elected officials, regulatory agencies and the general public more aware of issues affecting the neuromuscular disease community and have pushed for the passage of life-changing policies, programs and legislation. In 2015, our efforts alongside our passionate families and volunteers helped ensure passage of the Ensuring Access to Clinical Trials Act, helped delay cuts to complex rehabilitative technology, and played a role in securing the largest funding increase for the National Institutes of Health in the last decade, among other important progress. 17150109 13904068 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. 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 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 2015, MDA spent $17,150,109 on research designed to accelerate urgently needed treatments and cures for the families we serve. We contributed to dozens of 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: - 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 2015, MDA awarded 103 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 MDAs effort to discover treatments and cures, including the status of human trials of potential therapies, can be found at mda.org/research. 14962730 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 2015, MDA spent $14,962,730 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. Delivered critical information on research and care through MDAs award-winning national Quest Magazine that has a readership of 850,000 across print and online channels. 3. 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. 4. Delivered timely information on mda.org, which is recognized internationally as a key source of information about neuromuscular diseases. 5. Hosted the pre-eminent gathering of scientists, researchers and medical professionals specializing in neuromuscular disease research and clinical care at the 2015 MDA Scientific Conference in Washington, D.C., to bring together the nations best and brightest researchers to uncover scientific and medical breakthroughs that accelerate treatments and cures across the full spectrum of neuromuscular diseases. 88581203 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 false false false false false false false false true 920 20 true 1085 true true true false false false false true true true 15 false false false X 20 20 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 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 HONORABLE 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-CHAIRMAN 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 VICTOR WRIGHT TREASURER 2.0 0.0 X X 0 0 0 KRISTINE WELKER DIRECTOR 1.0 0.0 X 0 0 0 LILIAN WU PHD DIRECTOR 1.0 0.0 X 0 0 0 BART CONNER DIRECTOR 1.0 0.0 X 0 0 0 TIMMI MASTERS DIRECTOR 1.0 0.0 X 0 0 0 STEVEN M DERKS PRESIDENT & CEO 60.0 0.0 X 508871 0 84824 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 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, 2015 and 2014 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 407849 Europe (Including Iceland and Greenland) Program Services GRANTS TO RECIPIENTS 705287 Middle East and North Africa Program Services GRANTS TO RECIPIENTS 77379 North America Program Services GRANTS TO RECIPIENTS 838253 South America Program Services GRANTS TO RECIPIENTS 98000 2126768 2126768 East Asia and the Pacific RESEARCH 407849 check Europe (Including Iceland and Greenland) RESEARCH 705287 check Middle East and North Africa RESEARCH 77379 check North America RESEARCH 838253 check South America 98000 check 5 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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STRATEGIC RESOURCES, INC. 111 OVERLOOK ROAD PAMONA, NY 10970 true Albany Medical Center Hospital 47 New Scotland Ave MC 70 Albany NY 12208 141338310 501(c)(3) 18900 Medical Diagnosis Alfred I Dupont Hospital For Children PO Box 269 1600 Rockland Road Wilmington DE 19899 590634433 501(c)(3) 49500 Medical Diagnosis American Family Children's Hospital 21 North Park St Ste 6401 Madison WI 53715 396006492 501(c)(3) 25000 Medical Diagnosis Ann & Robert H Lurie Children's Hospital 225 E Chicago Ave Box 205 Chicago IL 60611 362170833 501(c)(3) 25000 Medical Diagnosis Arizona Board of Regents University of AZ 1303 E University Blvd Box 3 Tucson AZ 85719 742652689 State of AZ 84600 Research Baptist Hospital East 4000 Kresge Way Louisville KY 40207 610444707 501(c)(3) 11700 Medical Diagnosis Baylor College of Medicine One Baylor Plaza MS BCM 310 Houston TX 77030 741613878 501(c)(3) 200000 Research Billings Clinic PO Box 31031 Billings MT 59107 810407289 501(c)(3) 11700 Medical Diagnosis Board of 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Gillette Children's Specialty Healthcare Wells Fargo Bank NW 8265 PO Box 1 Minneapolis MN 55485 363379150 501(c)(3) 20000 Medical Diagnosis Glendale Neurological Assoc DBA (MIND) 28595 Orchard Lake Rd 200 Farmington Hills MI 48334 381889896 501(c)(3) 63000 Medical Diagnosis Good Shepherd Rehabilitation Hosp 850 S 5th St Allentown PA 18103 231371947 501(c)(3) 61200 Medical Diagnosis Gordon Research Conferences 512 Liberty Lane West Kingston RI 02892 260150662 501(c)(3) 7500 Research Greenville Hosp System University Medical Group 200 Patewood Dr A-200 Greenville SC 29615 576007863 501(c)(3) 8100 Medical Diagnosis Halo Therapeutics LLC 275 GROVE ST Ste 2-400 Newton MA 02466 275336394 Partnership 69000 Research Hamot 2nd Century Fund 302 French St Erie PA 16507 251400909 501(c)(3) 9000 Medical Diagnosis Health South Rehabilitation Hospital 1211 Union Ave Ste 400 Memphis TN 38104 621499155 501(c)(3) 55700 Medical Diagnosis Hershey Medical Center 500 University Dr Mail CodeEC037 Hershey PA 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West 16th 4th floor Indianapolis IN 46202 351955872 501(c)(3) 22500 Medical Diagnosis Joan and Sanford I Weill Medical College 1300 York Ave Box 89 New York NY 10065 131623978 501(c)(3) 199999 Research Johns Hopkins University School of Medicine 600 NWolfe St Baltimore MD 21287 320061260 501(c)(3) 195300 Medical Diagnosis Johns Hopkins University School of Medicine 733 North Broadway Ste 117 Baltimore MD 21205 520595110 501(c)(3) 579663 Research KUMC Research Institute 3901 Rainbow Blvd Kansas City KS 66160 481108830 501(c)(3) 46800 Medical Diagnosis Le Bonheur Children's Hospital 50 Peabody Place Ste 400 Memphis TN 38103 621872938 501(c)(3) 30375 Medical Diagnosis Loma Linda University 11175 Campus St Coleman Pav Rm A Loma Linda CA 92354 330364239 501(c)(3) 26100 Medical Diagnosis Louisiana State University Health Sci Ctr 1501 Kings Highway Neurology Dept Shreveport LA 71130 720702002 State of LA 27000 Medical Diagnosis LSU School of Medicine 433 Bolivar St New Orleans LA 70112 721304948 501(c)(3) 33300 Medical Diagnosis Lucile Salter Packard Child Hosp 4100 Bohannon Dr Mail Code 5894 1 Menlo Park CA 94025 770003859 501(c)(3) 43000 Medical Diagnosis Ludwig Institute for Cancer Research 9500 Gilman Dr La Jolla CA 92093 237121131 501(c)(3) 99009 Research Lutheran Hospital of Indiana 7950 W Jefferson Blvd Fort Wayne IN 46804 351963748 501(c)(3) 14400 Medical Diagnosis Maine Medical Center 49 Spring St Scarborough ME 04074 010238552 501(c)(3) 14850 Medical Diagnosis Marshfield Clinic 1000 North Oak Ave Marshfield WI 54449 390452970 501(c)(3) 10800 Medical Diagnosis Massachusetts General Hospital 55 FRUIT ST- WACC 720 BOSTON MA 02114 042697983 501(c)(3) 16903 Research Massachusetts General Hospital MGH Research Fin 1200-207418 PO Bo Boston MA 02241 042697983 501(c)(3) 123300 Medical Diagnosis Mayo Clinic Jacksonville 4500 San Pablo Road Jacksonville FL 32224 593337028 501(c)(3) 27000 Medical Diagnosis Mercy Clinic Neurology 2115 S Fremont Springfield MO 65804 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Research University of Massachusetts Medical school 55 Lake Ave North Worcester MA 01655 043167352 501(c)(3) 100000 Research University of Miami Sponsored Programs PO Box 405803 Atlanta GA 30384 592579826 State of GA 90168 Medical Diagnosis University of Missouri One Hospital Dr DC05630 Columbia MO 65212 436003859 State of MO 12600 Medical Diagnosis University of Nebraska Medical Center Sponsored ProgAcct/600 S42nd St Omaha NE 68198 470049123 State of NE 36000 Medical Diagnosis University of Nevada School of Medicine 2040 W Charleston Blvd Ste 300 Las Vegas NV 89102 880330858 State of NV 22500 Medical Diagnosis University of New Mexico Health & Science MSC 09 5225 1 University of New Mex Albuquerque NM 87131 856000642 State of NM 41400 Medical Diagnosis University of Oregon 5219 University of Oregon Eugene OR 97403 481278531 State of OR 84600 Research University of Pittsburgh 123 University Place Pittsburgh PA 15213 250965591 State of PA 93070 Research University of Pittsburgh 200 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40000 Medical Diagnosis Virginia Commonwealth University PO BOX 980568 Richmond VA 23298 546001758 State of VA 100000 Research W Virginia University Research Corp 1 Medical Ctr Dr Ste 7500 Morgantown WV 26508 550665758 State of WV 32400 Medical Diagnosis Wake Forest University School of Medicine 475 Vine St WinstonSalem NC 27157 223849199 State of NC 18000 Medical Diagnosis Washington University in St Louis 660 South Euclid Ave Campus Box 80 St Louis MO 63110 430653611 501(c)(3) 266902 Research Washington University School of Medicine DeptOf Neurology Box 8111 600 S St Louis MO 63110 430653611 State of MO 126000 Medical Diagnosis White Plains Hospital & Medical Center Davis Ave at East Post Road White Plains NY 10601 131740130 501(c)(3) 12600 Medical Diagnosis Wright State University 3640 Colonel Glenn Hwy Dayton OH 45435 310732831 501(c)(3) 82603 Research Yale University 800 Howard Ave PO Box 208071 New Haven CT 06520 060646973 501(c)(3) 37000 Medical Diagnosis 233 6 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 473271 0 35600 0 0 0 66750 0 18074 0 593695 0 0 0 JULIE FABER CPA ASST. TREASURER & CFO 243128 0 0 0 0 0 0 0 6807 0 249935 0 0 0 VALERIE A CWIK MD ASST. SEC/CHIEF MED SCIENTIFIC 237933 0 0 0 0 0 0 0 6807 0 244740 0 0 0 ANN MCNAMARA EVP - CHIEF DEV. OFFICER 223425 0 0 0 0 0 0 0 620 0 224045 0 0 0 STEVEN FORD EVP - CHIEF COMM/MRKT OFFICER 212036 0 5250 0 0 0 0 0 18074 0 235360 0 0 0 ROBERT GRINSFELDER EVP - CHIEF FIELD OPS OFFICER 192274 0 0 0 0 0 0 0 12908 0 205182 0 0 0 JOHN WALSH DIVISION CHIEF EXECUTIVE 160587 0 0 0 0 0 0 0 18074 0 178661 0 0 0 BRADLEY BARGHOLS DIVISION CHIEF EXECUTIVE 151446 0 0 0 0 0 0 0 18074 0 169520 0 0 0 GRACE K PAVLATH PHD SR. VP - SCIENTIFIC PROG DIR 197601 0 0 0 0 0 0 0 12908 0 210509 0 0 0 GAIL SCHMERTZ KERNER ESQ CHIEF LEGAL OFFICER 196731 0 0 0 0 0 0 0 18074 0 214805 0 0 0 EILEEN TIMMINS PHD VP & CHIEF HR OFFICER 194250 0 0 0 0 0 0 0 12498 0 206748 0 0 0 JEANNINE M HOULIHAN CHIEF INFORMATION OFFICER 184945 0 0 0 0 0 0 0 6807 0 191752 0 0 0 MARGARET HODGES DIVISION CHIEF EXECUTIVE 145472 0 0 0 0 0 0 0 18074 0 163546 0 0 0 schedule J, Part I, Line 4b: Steven M. Derks $66,750 457(B) & (F) retirement plan Daniel G Fries MDA Board Member 215281 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 $215,281 (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 32 88139 SELLING PRICE X MEDICAL EQUIPMENT 69 609489 APPRAISAL 42 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 A, LINE 4 THE ORGANIZATION REVISED ITS BYLAWS IN 2015 TO ADD TERMS FOR BOARD OF DIRECTOR MEMBERS AND OFFICERS AND TO UPDATE AND CLARIFY THE ROLES AND RESPONSIBILITIES OF CERTAIN MEMBERS, OFFICERS AND COMMITTEES INCLUDING THE PRESIDENT. FORM 990, PART VI, SECTION B, LINE 11 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, 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 885,031