2019-08-30T13:23:14-05:00 2018-12-31 221478099 COHNREZNICK LLP 4 BECKER FARM ROAD ROSELAND NJ 07068 990 2018-01-01 131665552 MUSCULAR DYSTROPHY ASSOCIATIONINC MUSC 3122605900 161 N CLARK ST NO 3550 CHICAGO IL 60601 MICHAEL J KENNEDY CFO 3122605900 2019-08-29 1 LORI ROTHE YOKOBOSKY CPA P01273422 9732283500 2019-08-28 209.59.242.22 2019-08-29 08:22:22 ED P CE01BC270595D296D8543B76CF2A4C9C8DEAC159 F9BA0E82A6D947CC92540FBC56E8B73643681DA5 2018 2019-02-21 02:37:17Z ELLEN VOSS 161 N CLARK ST NO 3550 CHICAGO IL 60601 124115241 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. 20 19 913 350000 373297 0 113962253 103881886 0 0 2531003 6232772 992004 542895 117485260 110657553 26449500 26577877 0 0 56599128 49730603 0 0 16230816 29034942 31488552 112083570 107797032 5401690 2860521 94239232 83664541 78070364 73718038 16168868 9946503 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 46664172 10258403 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. 18762515 16319474 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, AND IN 2018, MDA SUPPORTED 224 RESEARCH PROJECTS WORLDWIDE. 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. 12220075 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. 77646762 1 1 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 1 260 8 1 913 1 0 0 0 0 0 1 1 0 0 0 0 0 0 X 20 19 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 CONTROLER 3122605900 161 N CLARKE STREET STE 3550 CHICAGO IL 60601 BENJAMIN CUMBO III DIRECTOR 1.00 X 0 0 0 CHARLES D SCHOOR ESQ SECRETARY 2.00 X 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 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 MARSHALL D 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 VICTOR WRIGHT TREASURER 2.00 X X 0 0 0 EILEEN TIMMINS PHD JAN-SEPT ASST. SEC. EVP CHIEF PEOPLE OFFICER 50.00 X 162599 0 16975 ELLEN VOS PRESIDENT & CEO 50.00 X 530244 0 12037 JULIE FABER CPA ASST. TREASURER & CFO (JAN) 50.00 X 19696 0 756 MICHAEL KENNEDY MAR-DEC ASST. TREASURER, ASST. SEC. & CFO 50.00 X 215934 0 14175 KAREN ALEXANDER EVP, CHIEF IMPACT & PHILANTHROPY OFFICER 50.00 X 277790 0 12548 ANOTHONY ENGLERT VP, FUNDRAISING OPERATIONS 50.00 X 204054 0 20373 GAIL KERNER SR VP & GENERAL COUNSEL 50.00 X 183164 0 12699 GRACE PAVLATH SR VP SCIENTIFIC PROGRAM DIRECTOR 50.00 X 207898 0 19660 JEANNE ZUCKER SENIOR VP, HEALTHCARE PARTNERSHIPS 50.00 X 199605 0 0 KRISTIN STEPHENSON SVP, CHIEF POLICY & COMM ENGAGEMENT OFFICER 50.00 X 210997 0 30500 2211981 0 139723 39 0 1 0 INNOVATIVE TELEPHONE AND DATA 150 HOUSTON ST 301 BATAVIA IL 60510 IT SERVICES 509325 HYATT REGENCY CRYSTAL CITY 2799 JEFFERSON DAVIS HWY ARLINGTON VA 22202 EVENT SERVICES 471102 FLYING TELEVISION PRODUCTIONS 36 W 25TH ST STE 300 NEW YORK NY 10010 GALA MANAGEMENT SERVICES 396000 CLIFTON LARSON ALLEN LLP 220 S 6THS ST STE 300 MINNEAPOLIS MN 55402 AUDIT & TEMP SERVICES 301878 BDO USA 770 KENMOOR ST STE 300 GRAND RAPIDS MI 49546 AUDIT & TAX SERVICES 209216 15 268675 66043368 304341 37265502 3625298 103881886 1533253 1533253 15424 15424 11144273 6444754 4699519 4699519 4699519 6990769 66043368 6990769 0 176339 22165 154174 154174 QUEST ADVERTISING 541800 373297 373297 373297 110657553 0 373297 6402370 23661632 23661632 2916245 2916245 1262752 941261 181224 140267 37664807 27966892 5474557 4223358 902583 728367 94186 80030 6793939 5482570 708959 602410 3106522 2357865 421513 327144 540299 179216 128392 232691 238029 238029 546855 546855 205323 205323 7888729 2330167 1823093 3735469 247549 21826 182520 43203 8328901 2121463 1615618 4591820 6108697 5236970 490221 381506 3555455 2689120 352837 513498 78662 59495 7806 11361 314538 314538 270693 177851 80410 12432 940147 82891 693180 164076 MISCELLANEOUS EXPENSES 1342275 146076 907048 289151 FUNDRAISING EXPENSES 882400 882400 107797032 77646762 13919454 16230816 X 3246395 466037 788519 1991839 3405271 3383819 15629725 9445671 2897784 5818287 1916899 4916271 6949266 6304319 555932 644947 69833621 59455546 94239232 83664541 5713039 4068625 9674969 10468957 1689054 10000000 7500000 52682356 49991402 78070364 73718038 X 10090586 5364018 5160724 3816365 917558 766120 16168868 9946503 94239232 83664541 X 2860521 -8539078 -543808 X X 0 1 X 1 0 X 135174690 121934463 117071918 113962253 103881886 592025210 135174690 121934463 117071918 113962253 103881886 592025210 592025210 2555130 1700561 1736766 1920477 1548677 9461611 211673 258243 369757 298749 373297 1511719 14063176 9750743 10013249 8664556 7167108 49658832 652657372 0.90710 0.98250 X SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: OTHER REVENUE - 2014 AMOUNT: $ 331,475. 2015 AMOUNT: $ 432,222. 2016 AMOUNT: $ 312,578. 2017 AMOUNT: $ 347,946. SPECIAL EVENTS - 2014 AMOUNT: $ 13,415,167. 2015 AMOUNT: $ 8,673,714. 2016 AMOUNT: $ 8,970,739. 2017 AMOUNT: $ 7,942,063. 2018 AMOUNT: $ 6,990,769. GAMING EVENTS - 2014 AMOUNT: $ 316,534. 2015 AMOUNT: $ 644,807. 2016 AMOUNT: $ 729,932. 2017 AMOUNT: $ 374,547. 2018 AMOUNT: $ 176,339. 546855 546855 77099907 77646762 1000000 250000 0 0 1000000 1000000 1000000 1000000 4000000 6000000 375042 463056 510119 546855 1895072 250000 250000 250000 250000 1000000 1500000 17255 1438 18693 X X X 0 790985 -43248 108258 639479 477155 259816 54014 790985 357197 90075 29883 477155 362888 -5691 357197 346757 16131 362888 1.00000 0 0 161304 16885 144419 6787962 6287434 500528 644947 ACCRUED PENSION COST 49991402 49991402 X 100486944 -8539078 -1426208 -9965286 110452230 205323 205323 110657553 106709309 0 106709309 205323 882400 1087723 107797032 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, 2018, 2017, 2016, 2015 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 -882,400. CHANGES IN UNRECOGNIZED BENEFIT PLAN COSTS -543,808. PART XII, LINE 4B - OTHER ADJUSTMENTS: FUNDRAISING EXPENSES 882,400. 1 EAST ASIA AND THE PACIFIC 0 0 PROGRAM SERVICES RESEARCH GRANT 336389 EUROPE (INCLUDING ICELAND & GREENLAND) 0 0 PROGRAM SERVICES RESEARCH GRANT 1432458 NORTH AMERICA 0 0 PROGRAM SERVICES RESEARCH GRANT 1033898 SOUTH AMERICA 0 0 PROGRAM SERVICES RESEARCH GRANT 113500 0 0 0 0 0 0 2916245 0 2916245 EAST ASIA AND THE PACIFIC RESEARCH 336389 CHECK EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH 1432458 CHECK NORTH AMERICA RESEARCH 1033898 CHECK SOUTH AMERICA RESEARCH 113500 CHECK 33 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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RIDGE ROAD MORGANTOWN WV 26506 550665758 501(C)(3) 15000 MEDICAL DIAGNOSIS WRIGHT STATE UNIVERSITY 3640 COLONEL GLENN HWY DAYTON OH 45435 310732831 501(C)(3) 63840 RESEARCH YALE UNIVERSITY PO BOX 1873 NEW HAVEN CT 06508 060646973 501(C)(3) 123357 MEDICAL DIAGNOSIS AND RESEARCH 203 7 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 X X X X 1 0 0 0 0 0 0 0 0 EILEEN TIMMINS PHD JAN-SEPT ASST. SEC. EVP CHIEF PEOPLE OFFICER 155722 0 0 0 6877 0 700 0 16275 0 179574 0 0 0 ELLEN VOS PRESIDENT & CEO 529056 0 0 0 1188 0 0 0 12037 0 542281 0 0 0 MICHAEL KENNEDY MAR-DEC ASST. TREASURER, ASST. SEC. & CFO 215428 0 0 0 506 0 3617 0 10558 0 230109 0 0 0 KAREN ALEXANDER EVP, CHIEF IMPACT & PHILANTHROPY OFF 265266 0 0 0 12524 0 867 0 11681 0 290338 0 0 0 ANOTHONY ENGLERT VP, FUNDRAISING OPERATIONS 203280 0 0 0 774 0 2541 0 17832 0 224427 0 0 0 GAIL KERNER SR VP & GENERAL COUNSEL 82335 0 0 0 100829 0 0 0 12699 0 195863 0 0 0 GRACE PAVLATH SR VP SCIENTIFIC PROGRAM DIRECTOR 207710 0 0 0 188 0 1238 0 18422 0 227558 0 0 0 JEANNE ZUCKER SENIOR VP, HEALTHCARE PARTNERSHIPS 199039 0 0 0 566 0 0 0 0 0 199605 0 0 0 KRISTIN STEPHENSON SVP, CHIEF POLICY & COMM ENGAGEMENT 210817 0 0 0 180 0 688 0 29812 0 241497 0 0 0 PART I, LINE 4A GAIL KERNER RECEIVED SEVERANCE PAYMENT OF $98,475. THE AMOUNT IS PRESENTED IN PART II, B(III). STANLEY APPEL BOARD MEMBER 278500 RESEARCH GRANT SEE PART V DANIEL G FRIES MDA BOARD MEMBER 151400 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. 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 83 1109798 FMV X 1 2515500 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 -543,808. 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.