2020-09-21T10:45:31-05:00 2019-12-31 221478099 COHNREZNICK LLP 4 BECKER FARM ROAD ROSELAND NJ 07068 990 2019-01-01 131665552 MUSCULAR DYSTROPHY ASSOCIATIONINC MUSC 3122605900 161 N CLARK ST NO 3550 CHICAGO IL 60601 MICHAEL J KENNEDY CFO 3122605900 2020-09-18 1 LORI ROTHE YOKOBOSKY CPA P01273422 9732283500 2020-08-24 209.59.242.22 2020-09-18 08:58:12 ED P DA39A3EE5E6B4B0D3255BFEF95601890AFD80709 6C9B1A35775087DBDB8A6D25ECA509C7F6C27838 2019 2021-01-29 14:40:06Z ELLEN VOSS 161 N CLARK ST NO 3550 CHICAGO IL 60601 129763914 0 X WWW.MDA.ORG X 1950 NY THE MUSCULAR DYSTROPHY ASSOCIATION (MDA) IS COMMITTED TO TRANSFORMING THE LIVES OF PEOPLE WITH MUSCULAR DYSTROPHY, ALS, AND RELATED NEUROMUSCULAR DISEASES THROUGH INNOVATIONS IN SCIENCE AND INNOVATIONS IN CARE. 24 24 786 350000 286145 0 103881886 99904218 0 0 6232772 2526139 542895 -1457582 110657553 100972775 26577877 26371876 0 0 49730603 47805447 0 0 47863906 31488552 38572476 107797032 112749799 2860521 -11777024 83664541 81509086 73718038 82222737 9946503 -713651 X THE MUSCULAR DYSTROPHY ASSOCIATION (MDA) IS COMMITTED TO TRANSFORMING THE LIVES OF PEOPLE WITH MUSCULAR DYSTROPHY, ALS, AND RELATED NEUROMUSCULAR DISEASES THROUGH INNOVATIONS IN SCIENCE AND INNOVATIONS IN CARE. 0 0 28614874 9901833 HEALTH CARE AND COMMUNITY SERVICES:MDA IS COMMITTED TO TRANSFORMING THE LIVES OF PEOPLE AFFECTED BY MUSCULAR DYSTROPHY, ALS AND RELATED NEUROMUSCULAR DISEASES THROUGH INNOVATIONS IN SCIENCE AND INNOVATIONS IN CARE. AS THE LARGEST SOURCE OF FUNDING FOR NEUROMUSCULAR DISEASE RESEARCH OUTSIDE OF THE FEDERAL GOVERNMENT MDA HAS COMMITTED MORE THAN $1 BILLION TO ACCELERATE THE DISCOVERY OF THERAPIES AND CURES. WE SUPPORT THE LARGEST NETWORK OF MULTIDISCIPLINARY CLINICS AT MORE THAN 150 TOP MEDICAL INSTITUTIONS, SERVE THE COMMUNITY WITH ONE-ON-ONE SPECIALIZED SUPPORT, AND OFFER EDUCATIONAL CONFERENCES, EVENTS, AND MATERIALS FOR FAMILIES AND HEALTHCARE PROVIDERS. EACH OF OUR MDA CARE CENTERS OFFERS INDIVIDUALS AND FAMILIES BEST-IN-CLASS, COMPREHENSIVE CARE FROM AN INTEGRATED MULTIDISCIPLINARY TEAM OF HEALTHCARE SPECIALISTS CONVENIENTLY SITED AT ONE LOCATION. IN A SINGLE DAY, PATIENTS CAN SEE MULTIPLE HEALTHCARE PROVIDERS WHO WORK TOGETHER TO ENSURE COORDINATED INDIVIDUAL CARE FOR EVERY PATIENT TO BEST FIT THEIR SPECIFIC NEEDS. HIGHLY TRAINED MDA CARE SPECIALISTS SERVE AS AN IMPORTANT PART OF THE CARE TEAM, HELPING FAMILIES NAVIGATE THE HEALTH SYSTEM, ANSWERING QUESTIONS, DISTRIBUTING MDA EDUCATIONAL MATERIALS, COORDINATING MDA SERVICES, AND ASSISTING WITH COMMUNITY RESOURCE REFERRALS. EACH YEAR THOUSANDS OF CHILDREN/YOUNG ADULTS LEARN VITAL LIFE SKILLS AND GAIN INDEPENDENCE AT SUMMER CAMP AND THROUGH RECREATIONAL PROGRAMS, AT NO COST TO FAMILIES. EACH CAMP IS STAFFED WITH DEDICATED HEALTH PROFESSIONALS AND TRAINED CAMP VOLUNTEERS WHO MEET THE MEDICAL AND PHYSICAL NEEDS OF EACH CAMPER ALL AT NO COST TO FAMILIES. 19855585 16394896 RESEARCH: MDA IS THE LARGEST NON-GOVERNMENTAL FUNDER OF NEUROMUSCULAR DISEASE RESEARCH IN THE COUNTRY, SUPPORTING MORE THAN 40 NEUROMUSCULAR DISEASES INCLUDING MUSCULAR DYSTROPHY, ALS, AND MANY OTHERS. SINCE ITS INCEPTION IN 1950, MDA HAS INVESTED MORE THAN $1 BILLION IN NEUROMUSCULAR DISEASE RESEARCH TO UNCOVER NEW TREATMENTS AND CURE. A SINGLE BREAKTHROUGH CAN LEAD TO A CURE. OUR UMBRELLA MODEL OF FUNDING RESEARCH ACROSS MANY NEUROMUSCULAR DISEASES MEANS FINDINGS FROM ONE DISEASE OFTEN ENABLE PROGRESS IN OTHERS, MAXIMIZING THE SPEED AT WHICH WE CAN MAKE PROGRESS. SUPPORT FOR MDA'S RESEARCH ENABLES MDA TO FUND LEADING RESEARCH TEAMS WORKING TOWARD BREAKTHROUGH THERAPIES, WHICH CAN HAVE A LIFE-CHANGING IMPACT ON PATIENTS. MDA-FUNDED BREAKTHROUGHS INCLUDE DRUGS FOR AMYOTROPHIC LATERAL SCLEROSIS (ALS), DUCHENNE MUSCULAR DYSTROPHY (DMD), PERIODIC PARALYSIS, POMPE DISEASE, AND SPINAL MUSCULAR ATROPHY (SMA). MDA LAUNCHED THE MOVR (NEUROMUSCULAR OBSERVATIONAL RESEARCH) DATA HUB AS A TRANSFORMATIVE PLATFORM, COMBINING MDA'S CARE CENTER NETWORK WITH A STATE-OF-THE-ART INFORMATION-MANAGEMENT SYSTEM. AS THE LARGEST CENTRALIZED DATA HUB FOR MULTIPLE NEUROMUSCULAR DISEASES, MOVR AGGREGATES CLINICAL, GENETIC, AND PATIENT-REPORTED DATA ACROSS BROAD COMMUNITIES OF HEALTHCARE PROVIDERS, RESEARCHERS, AND INDUSTRY PARTNERS THAT WILL LEAD TO RAPID DEVELOPMENTS IN PATIENT CARE, TREATMENTS, AND CURES. 9124865 75147 PROFESSIONAL AND PUBLIC HEALTH EDUCATION:MDA OFFERS A BROAD AND EXPANDING ARRAY OF RESOURCES AND EVENTS EXPERTLY DEVELOPED TO RESPOND TO THE RAPIDLY CHANGING TREATMENT LANDSCAPE. OUR RESOURCES FOR PROVIDING RELEVANT MEDICAL EDUCATION TO PROFESSIONALS ARE UNPARALLELED AND OUR SERVICES AND INITIATIVES REFLECT OUR LEADERSHIP IN THIS AREA. WE PROVIDE BOTH ACCREDITED CONTINUING MEDICAL EDUCATION (CME) AND NON-CME PROGRAMS. AS THE MOST COMPREHENSIVE NEUROMUSCULAR DISEASE MEETING IN THE U.S., OUR ANNUAL MDA CLINICAL & SCIENTIFIC CONFERENCE PROVIDES A UNIQUE OPPORTUNITY TO LEARN FROM, BE INSPIRED BY, AND SHARE IDEAS WITH EXPERTS FROM ACADEMIA, GOVERNMENT, AND INDUSTRY. AT THE COMMUNITY LEVEL, WE ESTABLISHED MDA ENGAGE, A FLAGSHIP EDUCATIONAL EVENT SERIES THAT BRINGS LOCAL HIGH-IMPACT EDUCATIONAL PROGRAMS TO THE NMD COMMUNITY. EACH OF THE ENGAGE PROGRAMS INCORPORATES MULTIPLE MODULES OF INTEREST, FROM THERAPY DEVELOPMENT ROUNDTABLES TO DISEASE MANAGEMENT TO GENETIC TESTING, DESIGNED SPECIFICALLY FOR COMMUNITY AUDIENCES. EACH EVENT ALSO INCLUDES A SOCIAL ELEMENT FOR FAMILIES AND PARTICIPANTS WITH THE AIM OF STRENGTHENING THE COMMUNITY AND HELPING ATTENDEES MAKE PERSONAL. 57595324 1 0 0 1 0 0 0 1 0 1 1 0 0 0 1 1 1 0 0 0 1 1 0 0 1 1 0 1 0 1 0 0 0 0 1 0 0 1 1 0 0 0 0 0 0 0 0 1 502 12 1 786 1 1 1 0 0 0 0 1 1 0 0 0 0 0 0 X 24 24 0 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 1 0 AL AK AZ CA CO CT DE FL GA HI ID IL IN IA KS KY LA ME MD MA MI MN 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 JENNIFER BUZALSKI CONTROLLER 3122605975 161 N CLARK STREET STE 3550 CHICAGO IL 60601 ANJAN ARALIHALLI DIRECTOR 1.00 X 0 0 0 ANKUR GHIA DIRECTOR 1.00 X 0 0 0 BENJAMIN CUMBO III DIRECTOR 1.00 X 0 0 0 CHARLES D SCHOOR ESQ DIRECTOR 1.00 X 0 0 0 CHRISTOPHER J ROSA PHD VICE CHAIR 1.00 X X 0 0 0 DANIEL G FRIES DIRECTOR 1.00 X 0 0 0 DAVE HUTTON DIRECTOR 1.00 X 0 0 0 DON WOOD DIRECTOR 1.00 X 0 0 0 ELIZABETH MCNALLY MD PHD DIRECTOR 1.00 X 0 0 0 EUGENE WILLIAMS DIRECTOR 1.00 X 0 0 0 GOVERNOR BRAD HENRY DIRECTOR 3.00 X 0 0 0 JOHN COSTANTINO DIRECTOR 3.00 X 0 0 0 JOHN TOGNINO DIRECTOR 1.00 X 0 0 0 KRISTINE WELKER DIRECTOR 3.00 X 0 0 0 LILIAN WU PHD DIRECTOR 1.00 X 0 0 0 LOUIS KUNKEL PHD DIRECTOR 1.00 X 0 0 0 MARK SMITH DIRECTOR 3.00 X 0 0 0 MIKE ROWLETT DIRECTOR 1.00 X 0 0 0 PATRICIA NAZEMETZ DIRECTOR 1.00 X 0 0 0 R RODNEY HOWELL MD CHAIRMAN 5.00 X X 0 0 0 STANLEY APPEL MD DIRECTOR 3.00 X 0 0 0 STEVE FARELLA DIRECTOR 3.00 X 0 0 0 STEVE FELSHER DIRECTOR 1.00 X 0 0 0 VICTOR WRIGHT DIRECTOR 2.00 X 0 0 0 ELLEN VOS PRESIDENT & CEO 50.00 X 508029 0 28218 KAREN ANDREWS SECRETARY & CHIEF LEGAL OFFICER 50.00 X 413969 0 0 MICHAEL KENNEDY TREASURER & CFO 50.00 X 287333 0 35711 JENNIFER ALLEBACH SVP OF RECREATION AND CAMP PROGRAMS 40.00 X 150209 0 3008 KATHY KAUFFMANN CHIEF STRATEGY DEVELOPMENT OFFICER 40.00 X 152342 0 17976 ADAM COTUMACCIO CHIEF IMPACT & PHILANTHROPY OFFICER 40.00 X 284234 0 46389 JEANNE ZUCKER SENIOR VP, HEALTHCARE PART 40.00 X 260422 0 11000 KRISTIN STEPHENSON SVP, CHIEF POLICY & COMM E 40.00 X 203107 0 40598 MEREDITH WILSON VP, HEALTHCARE COMMUNICATIONS & EDUCATION 40.00 X 179647 0 8187 MICHAEL BRUNO CHIEF PEOPLE AND ADMINISTRATIVE OFFICER 40.00 X 214376 0 13292 2653668 0 204379 49 0 1 0 TYLER HAINES CUNNINGHAM 33 GARDEN AVE BRONXVILLE NY 10708 MARKETING 311959 ERICK JAMES SODERSTROM 66 HUNTING LANE SHERBORN MA 01770 MARKETING 208000 SIBSON CONSULTING PO BOX 4058 NEW YORK NY 10261 PENSION MANAGEMENT 172900 DEB BARGE PO BOX 35 OAS HARBOR WA 98277 CONSULTING 140000 ELLEN SHEDLARZ 151 EAST 83 ST APT 10A NEW YORK NY 10028 CONSULTING 120961 8 1112148 52812454 335898 45643718 59097 99904218 1545505 1545505 6780 6780 25026821 24046187 980634 980634 980634 2928946 52812454 4686952 -1758006 -1758006 65499 58000 7499 7499 QUEST ADVERTISING 541800 286145 286145 286145 100972775 0 286145 782412 23783703 23783703 2588173 2588173 1183626 480577 72018 631031 36058934 14640686 2194008 19224240 544492 221075 33130 290287 6924383 2811445 421315 3691623 3094012 1256234 188255 1649523 313726 51031 26011 236684 173954 173954 411778 411778 240913 240913 8452184 2655470 1634823 4161891 11024831 2948960 712242 7363629 4980385 2232680 591366 2156339 2931884 1870297 192404 869183 1583478 1010127 103915 469436 315915 315915 669763 241087 70684 357992 742373 166041 170086 406246 EVENT EXPENSES 5326236 20610 1027 5304599 MISCELLANEOUS EXPENSES 1405056 205350 148503 1051203 112749799 57595324 7290569 47863906 X 4641396 666298 1127344 2847754 3383819 5027072 9445671 4021308 5660208 4999917 1000000 4689439 5064978 9640680 6974082 644947 2666598 59455546 58344302 384911 384911 83664541 81509086 4068625 7212362 10468957 11383214 1689054 1721885 7500000 7500000 49991402 54405276 73718038 82222737 X 5364018 -5966906 4582485 5253255 9946503 -713651 83664541 81509086 X -11777024 9038089 -7921219 X X 0 1 X 1 0 X 121934463 117071918 113962253 103881886 99904218 556754738 121934463 117071918 113962253 103881886 99904218 556754738 556754738 1700561 1736766 1920477 1548677 1552285 8458766 258243 369757 298749 373297 286145 1586191 9750743 10013249 8664556 7167108 2986946 38582602 605382297 0.91970 0.90710 X SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: OTHER REVENUE - 2015 AMOUNT: $ 432,222. 2016 AMOUNT: $ 312,578. 2017 AMOUNT: $ 347,946. SPECIAL EVENTS - 2015 AMOUNT: $ 8,673,714. 2016 AMOUNT: $ 8,970,739. 2017 AMOUNT: $ 7,942,063. 2018 AMOUNT: $ 6,990,769. 2019 AMOUNT: $ 2,928,946. GAMING EVENTS - 2015 AMOUNT: $ 644,807. 2016 AMOUNT: $ 729,932. 2017 AMOUNT: $ 374,547. 2018 AMOUNT: $ 176,339. 2019 AMOUNT: $ 58,000. 411778 411778 57183546 57595324 1000000 250000 0 0 1000000 1000000 1000000 1000000 4000000 6000000 463056 510119 546855 411778 1931808 250000 250000 250000 250000 1000000 1500000 1438 1438 X X X 0 639479 150206 127675 662010 790985 -43248 108258 639479 477155 259816 54014 790985 357197 90075 29883 477155 362888 -5691 357197 1.00000 0 0 219994 59655 160339 9420686 6914427 2506259 2666598 ACCRUED PENSION COST 54405276 54405276 X 101548855 9038089 -8322204 715885 100832970 139805 139805 100972775 112209009 0 112209009 139805 400985 540790 112749799 PART III, LINE 4: THE MDA ART COLLECTION IS ONE OF THE MOST VARIED COLLECTIONS IN THE NATION. 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. PART V, LINE 4: THE ASSOCIATION'S ENDOWMENT CONSISTS OF ONE INDIVIDUAL FUND ESTABLISHED FOR THE ADVANCEMENT OF RESEARCH, PROGRAMS AND SERVICES FOR THOSE WITH MUSCULAR DYSTROPHY. THE GLEN E. & DAVID K. GUTTORMSEN ENDOWED FUND FOR DUCHENNE MUSCULAR DYSTROPHY RESEARCH WAS ESTABLISHED IN AN AGREEMENT, EFFECTIVE MAY 25, 2010, WHEREBY THE ASSOCIATION IS TO MAINTAIN AND ADMINISTER THE FUND IN ACCORDANCE WITH THE DONOR'S DESIRES. 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, 2019, 2018, 2017, 2016 ARE OPEN FOR EXAMINATION BY FEDERAL AND STATE TAXING AUTHORITIES, WHICH GENERALLY IS FOR THREE YEARS AFTER THEY ARE FILED. IF APPLICABLE, THE ASSOCIATION WOULD RECOGNIZE INTEREST AND PENALTIES ASSOCIATED WITH TAX MATTERS AS PART OF GENERAL AND ADMINISTRATIVE EXPENSES AND WOULD INCLUDE ACCRUED INTEREST AND PENALTIES IN ACCRUED EXPENSES. PART XI, LINE 2D - OTHER ADJUSTMENTS: FUNDRAISING EXPENSES -400,985. CHANGES IN UNRECOGNIZED BENEFIT PLAN COSTS -7,921,219. PART XII, LINE 4B - OTHER ADJUSTMENTS: FUNDRAISING EXPENSES 400,985. 1 EAST ASIA AND THE PACIFIC - AUSTRALIA, BRUNEI, BURMA, CAMBODIA, 0 0 PROGRAM SERVICES RESEARCH GRANT 262599 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM 0 0 PROGRAM SERVICES RESEARCH GRANT 1892851 NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES 0 0 PROGRAM SERVICES RESEARCH GRANT 352723 SOUTH AMERICA - ARGENTINA, BOLIVIA, BRAZIL, CHILE, COLUMBIA, ECUADOR, 0 0 PROGRAM SERVICES RESEARCH GRANT 80000 0 0 0 0 0 0 2588173 0 2588173 EAST ASIA AND THE PACIFIC - AUSTRALIA, BRUNEI, BURMA, CAMBODIA, RESEARCH 262599 CHECK EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM RESEARCH 1892851 CHECK NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES RESEARCH 352723 CHECK SOUTH AMERICA - ARGENTINA, BOLIVIA, BRAZIL, CHILE, COLUMBIA, ECUADOR, RESEARCH 80000 CHECK 27 0 0 0 0 0 0 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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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 X X X X 0 0 0 0 0 0 0 0 0 ELLEN VOS PRESIDENT & CEO 506841 0 0 0 1188 0 0 0 28218 0 536247 0 0 0 KAREN ANDREWS SECRETARY & CHIEF LEGAL OFFICER 413969 0 0 0 0 0 0 0 0 0 413969 0 0 0 MICHAEL KENNEDY TREASURER & CFO 286145 0 0 0 1188 0 8913 0 26798 0 323044 0 0 0 JENNIFER ALLEBACH SVP OF RECREATION AND CAMP PROGRAMS 139615 0 10000 0 594 0 3008 0 0 0 153217 0 0 0 KATHY KAUFFMANN CHIEF STRATEGY DEVELOPMENT OFFICER 152167 0 0 0 175 0 4500 0 13476 0 170318 0 0 0 ADAM COTUMACCIO CHIEF IMPACT & PHILANTHROPY OFFICER 283820 0 0 0 414 0 9000 0 37389 0 330623 0 0 0 JEANNE ZUCKER SENIOR VP, HEALTHCARE PART 234677 0 25000 0 745 0 0 0 11000 0 271422 0 0 0 KRISTIN STEPHENSON SVP, CHIEF POLICY & COMM E 202927 0 0 0 180 0 4827 0 35771 0 243705 0 0 0 MEREDITH WILSON VP, HEALTHCARE COMMUNICATIONS & EDUC 179377 0 0 0 270 0 5256 0 2931 0 187834 0 0 0 MICHAEL BRUNO CHIEF PEOPLE AND ADMINISTRATIVE OFFI 212881 0 0 0 1495 0 0 0 13292 0 227668 0 0 0 STANLEY APPEL BOARD MEMBER 239250 RESEARCH GRANT SEE PART V KAREN ANDREWS OFFICER 413969 KAREN ANDREWS IS PRINCIPAL AT KAREN ANDREWS LAW LLC, AND IS NOT COMPENSATED BY MUSCULAR DYSTROPHY ASSOCIATION, INC. AS AN EMPLOYEE ON PART VII, SECTION A. 0 PART III, LINE 1, COLUMN E: THE GRANT AMOUNT WENT TO STANLEY APPEL'S INSTITUTION, THE METHODIST HOSPITAL RESEARCH INSTITUTE. HE WAS THE RESEARCHER THAT THE GRANT BENEFITS. X 17 59097 FMV 0 0 0 PART I, COLUMN (B): AMOUNTS IN COLUMN B REPRESENT THE NUMBER OF CONTRIBUTIONS. 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, 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. FORM 990, PART XI, LINE 9: CHANGE IN UNRECOGNIZED BENEFIT PLAN COSTS -7,921,219. FORM 990, PART XII LINE 2C: THE ORGANIZATION HAS A COMMITTEE RESPONSIBLE FOR THE OVERSIGHT OF THE AUDIT AS WELL AS THE SELECTION OF THE INDEPENDENT ACCOUNTANT.