2021-10-25T10:29:51-05:00 2020-12-31 221478099 COHNREZNICK LLP 14 SYLVAN WAY PARSIPPANY NJ 070543801 990 2020-01-01 131665552 MUSCULAR DYSTROPHY ASSOCIATION INC MUSC 3122605900 161 N CLARK ST NO 3550 CHICAGO IL 60601 MICHAEL J KENNEDY CFO 3122605900 2021-10-25 1 MICHAEL KENNEDY 999009999 LORI ROTHE YOKOBOSKY CPA P01273422 9732283500 2021-10-23 2 AAL1 IAL1 2020 2022-09-23 18:48:47Z DR DONALD S WOOD 161 N CLARK ST NO 3550 CHICAGO IL 60601 116883195 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. 18 18 593 300000 410505 0 99904218 51830703 0 0 2526139 14247084 -1457582 -2370514 100972775 63707273 26371876 15019770 0 0 47805447 31271925 0 0 26665147 38572476 22080747 112749799 68372442 -11777024 -4665169 81509086 71915435 82222737 95625096 -713651 -23709661 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 19086727 6143702 THE SPREAD OF A NOVEL STRAIN OF CORONAVIRUS ("COVID-19") HAS CAUSED SIGNIFICANT BUSINESS DISRUPTIONS ON THE ENTIRE GLOBE BEGINNING IN THE FIRST QUARTER OF 2020. COVID-19 PRESENTED EXTREME CHALLENGES IN 2020 FOR THE ASSOCIATION REGARDING FUNDRAISING ACTIVITIES. EVENT FUNDRAISING WAS DOWN OVER 46% COMPARED TO HISTORICAL TRENDS DUE TO STAY AT HOME ORDERS, RESTRICTIONS ON IN-PERSON GATHERINGS, AND IMPACTS TO SPONSOR AND DONOR LEVELS OF GIVING. THE PANDEMIC CAUSED THE ASSOCIATION TO QUICKLY PIVOT IN ORDER TO CONTINUE TO PROVIDE THEIR MISSION BENEFITS, INCLUDING MOVING TO VIRTUAL FUNDRAISING AND A VIRTUAL PLATFORM FOR SUMMER CAMP AND CARE CENTER SUPPORT. THE ASSOCIATION QUICKLY REDUCED TOTAL EXPENSES BY 37% IN RESPONSE TO THE DECLINE IN FUNDRAISING, WHILE AT THE SAME TIME, PRIORITIZING PROGRAM SERVICES (E.G., RESEARCH, PUBLIC HEALTH, AND PATIENT AND COMMUNITY SERVICES), WITH SPEND IN THESE CRITICAL AREAS AT $27 MILLION IN 2020.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. PER CDC GUIDELINES, THE 2020 SUMMER CAMP PROGRAM WAS HELD VIRTUALLY. 11018895 8849011 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. 6763708 27057 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. 36869330 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 0 0 1 0 1 0 0 0 0 0 0 0 1 1 0 0 0 0 0 0 0 0 1 100 0 1 593 1 1 1 0 0 0 0 1 1 0 0 0 0 0 0 X 18 18 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 ELIZABETH MCNALLY MD PHD DIRECTOR 1.00 X 0 0 0 EUGENE WILLIAMS DIRECTOR 1.00 X 0 0 0 GOVERNOR BRAD HENRY VICE CHAIR 1.00 X 0 0 0 HON ROBERT E PIPIA DIRECTOR 1.00 X 0 0 0 JENNIFER GOTTLIEB DIRECTOR 1.00 X 0 0 0 JOHN COSTANTINO DIRECTOR 1.00 X 0 0 0 JOHN E HOWELL DIRECTOR 1.00 X 0 0 0 JOHN TOGNINO DIRECTOR 1.00 X 0 0 0 KRISTINE WELKER DIRECTOR 1.00 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 1.00 X 0 0 0 PATRICIA NAZEMETZ OUTGOING DIRECTOR 1.00 X 0 0 0 STEVE FARELLA CHAIRMAN 5.00 X X 0 0 0 STEVE FELSHER OUTGOING DIRECTOR 1.00 X 0 0 0 VICTOR WRIGHT DIRECTOR 1.00 X 0 0 0 DONALD WOOD PRESIDENT & CEO (NOV-DEC) 50.00 X 14663 0 0 ELLEN VOS PRESIDENT & CEO (JAN-OCT) 50.00 X 823260 0 29947 KAREN ANDREWS SEC. & CHIEF LEGAL OFFICER (JAN-OCT) 50.00 X 382063 0 0 LINDSAY KASSOF SEC. & ASSOC LEGAL COUN (NOV-DEC) 50.00 X 169755 0 15838 MICHAEL KENNEDY TREASURER & CFO 50.00 X 280612 0 30270 JENNIFER ALLEBACH SVP OF CAMP PROGRAMS (JAN-NOV) 50.00 X 200697 0 2691 KATHY KAUFFMANN CHIEF STRATEGY DEVELOPMENT OFFICER 50.00 X 325534 0 38048 SHARON HESTERLEE CHIEF RESEARCH OFFICER 50.00 X 215353 0 24043 DEBORAH BARGE SVP, CHIEF FIELD OFFICER 50.00 X 234488 0 1118 JEANNE ZUCKER SVP HEALTHCARE PARTNERSHIPS 50.00 X 230581 0 12760 JONATHON NAGLE CHIEF TECHNOLOGY OFFICER 50.00 X 221784 0 22931 JOSHUA ACKLEY VP OF PR & COMMUNICATIONS 50.00 X 219512 0 9711 KRISTIN STEPHENSON CHIEF ADVOCACY & CARE SERVICES OFFICER 50.00 X 228161 0 31349 3546463 0 218706 44 0 1 0 WAINSCOTT HOLDING LLC 18 EAST LANCASTER AVENUE WYNEEWOOD PA 19096 PATIENT DATABASE BUILDOUT 183523 1 296677 13044526 329833 38159667 803597 51830703 965018 965018 77828 77828 62468245 65015 49089820 161374 13378425 -96359 13282066 13282066 1061931 13044526 3923728 -2861797 -2861797 3950 1000 2950 2950 QUEST ADVERTISING 541800 410505 410505 410505 63707273 0 410505 11466065 12732489 12732489 2287281 2287281 2552774 1194695 183270 1174809 20861812 9763302 1497723 9600787 312822 146401 22458 143963 5359282 2508138 384756 2466388 2185235 1022687 156884 1005664 380632 47759 140631 192242 130770 130770 628981 628981 204877 204877 2005708 1036311 587380 382017 4128256 824857 3303399 6292064 2195251 510269 3586544 85082 66182 18900 3310750 1539514 377547 1393689 372048 174157 197891 38161 32512 2215 3434 267278 267278 745638 309660 87424 348554 617346 169401 165610 282335 EVENT EXPENSES 1861624 1861624 MISCELLANEOUS EXPENSES 1011532 255934 52691 702907 68372442 36869330 4837965 26665147 X 1773766 254634 430828 1088304 5027072 4348343 4021308 3540042 4999917 4426491 1000000 5064978 4398695 4321022 2421004 2666598 1900018 58344302 53276935 384911 24911 81509086 71915435 7212362 4847691 11383214 7681991 1721885 555933 7500000 13000000 54405276 69539481 82222737 95625096 X -5966906 -27557359 5253255 3847698 -713651 -23709661 81509086 71915435 X -4665169 -6000627 -12330214 X X 0 1 X 1 0 X 117071918 113962253 103881886 99904218 51829703 486649978 117071918 113962253 103881886 99904218 51829703 486649978 486649978 1736766 1920477 1548677 1552285 1042846 7801051 369757 298749 373297 286145 410505 1738453 10013249 8664556 7167108 2994445 1065881 29905239 526094721 0.92500 0.91970 X SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: OTHER REVENUE - 2016 AMOUNT: $ 312,578. 2017 AMOUNT: $ 347,946. SPECIAL EVENTS - 2016 AMOUNT: $ 8,970,739. 2017 AMOUNT: $ 7,942,063. 2018 AMOUNT: $ 6,990,769. 2019 AMOUNT: $ 2,928,946. 2020 AMOUNT: $ 1,061,931. GAMING EVENTS - 2016 AMOUNT: $ 729,932. 2017 AMOUNT: $ 374,547. 2018 AMOUNT: $ 176,339. 2019 AMOUNT: $ 65,499. 2020 AMOUNT: $ 3,950. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 628981 628981 35957577 36586558 1000000 250000 0 0 1000000 1000000 1000000 1000000 4000000 6000000 510119 546855 411778 628981 2097733 250000 250000 250000 250000 1000000 1500000 X X X 0 662010 148733 126423 684320 639479 150206 127675 662010 790985 -43248 108258 639479 477155 259816 54014 790985 357197 90075 29883 477155 1.00000 0 0 242937 99555 143382 4078085 2321449 1756636 1900018 ACCRUED PENSION COST 60812751 PAYCHECK PROTECTION PROGRAM LOAN 8726730 69539481 X 48272446 -6000627 -12612986 -18613613 66886059 182733 -3361519 -3178786 63707273 71268456 3361519 3361519 67906937 182733 282772 465505 68372442 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: 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, 2020, 2019, 2018, 2017 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: CHANGES IN UNRECOGNIZED BENEFIT PLAN COSTS -12,612,986. PART XI, LINE 4B - OTHER ADJUSTMENTS: LOSS ON DISPOSAL OF FIXED ASSETS -96,359. FUNDRAISING EXPENSES NETTED AGAINST FUNDRAISING REVENUE -3,265,160. PART XII, LINE 2D - OTHER ADJUSTMENTS: LOSS ON DISPOSAL OF FIXED ASSETS 96,359. FUNDRAISING EXPENSES NETTED AGAINST FUNDRAISING REVENUE 3,265,160. PART XII, LINE 4B - OTHER ADJUSTMENTS: REFUND OF PREVIOUSLY REPORTED GRANTS 282,772. 0 EAST ASIA AND THE PACIFIC - AUSTRALIA, BRUNEI, BURMA, CAMBODIA, 0 0 PROGRAM SERVICES RESEARCH GRANT 196628 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM 0 0 PROGRAM SERVICES RESEARCH GRANT 1767487 NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES 0 0 PROGRAM SERVICES RESEARCH GRANT 229833 SOUTH AMERICA - ARGENTINA, BOLIVIA, BRAZIL, CHILE, COLUMBIA, ECUADOR, 0 0 PROGRAM SERVICES RESEARCH GRANT 93333 0 0 0 0 0 0 2287281 0 2287281 EAST ASIA AND THE PACIFIC - AUSTRALIA, BRUNEI, BURMA, CAMBODIA, RESEARCH 196628 CHECK/WIRE EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM RESEARCH 1767487 CHECK/WIRE NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES RESEARCH 229833 CHECK/WIRE SOUTH AMERICA - ARGENTINA, BOLIVIA, BRAZIL, CHILE, COLUMBIA, ECUADOR, RESEARCH 93333 CHECK/WIRE 17 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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PA 15213 250965591 STATE OF PA 50000 MEDICAL DIAGNOSIS UNIVERSITY OF PUERTO RICO MEDICAL SCIENCES 400 FD ROOSEVELT AVE SAN JUAN RQ 660433762 9260 MEDICAL DIAGNOSIS UNIVERSITY OF ROCHESTER 518 HYLAN BLDG BOX 270140 ROCHESTER NY 14627 160743209 501(C)(3) 175000 MEDICAL DIAGNOSIS AND RESEARCH UNIVERSITY OF TEXAS HEALTH SCIENCE CENTER AT SAN ANTONIO 7703 FLOYD CURL DRIVE MSC 7828 SAN ANTONIO TX 78229 741586031 STATE OF TX 75000 MEDICAL DIAGNOSIS UNIVERSITY OF UTAH 75 S 2000 E RM 111 SALT LAKE CITY UT 84112 876000525 STATE OF UT 123173 MEDICAL DIAGNOSIS AND RESEARCH UNIVERSITY OF VERMONT MEDICAL CENTER PO BOX 1902 BURLINGTON VT 05401 030219303 STATE OF VT 20775 MEDICAL DIAGNOSIS AND REGISTRY SUPPORT UNIVERSITY OF WASHINGTON 4333 BROOKLYN AVE NE BOX 359472 SEATTLE WA 98195 916001537 STATE OF WA 189562 RESEARCH UNIVERSITY OF WASHINGTON MEDICAL CENTER 1959 NE PACIFIC SEATTLE WA 98195 916001537 STATE OF WA 50000 MEDICAL DIAGNOSIS UNIVERSITY OF WISCONSIN 4410 SOUTH 3RD STREET RIVER FALLS WI 54022 391805963 501(C)(3) 81667 RESEARCH UT SOUTHWESTERN MEDICAL CENTER PO BOX 841753 DALLAS TX 75284 756002868 STATE OF TX 158750 MEDICAL DIAGNOSIS UW HOSPITAL AN CLINICS AUTHORITY 600 HIGHLAND AVE MILWAUKEE WI 53792 391835630 501(C)(3) 20000 MEDICAL DIAGNOSIS VANDERBILT UNIVERSITY MEDICAL CENTER PO BOX 121236 DALLAS TX 75312 352528741 501(C)(3) 115000 MEDICAL DIAGNOSIS AND REGISTRY SUPPORT VIA CHRISTI HOSPITALS WICHITA INC 707 NORTH EMPORIA AVENUE WICHITA KS 67214 481172106 501(C)(3) 20000 MEDICAL DIAGNOSIS VIRGINIA COMMONWEALTH UNIVERSITY PO BOX 980568 RICHMOND VA 23298 546001758 501(C)(3) 274168 RESEARCH WAKE FOREST UNIVERSITY HEALTH SCIENCES MEDICAL CENTER BLVD WINSTON SALEM NC 27157 223849199 501(C)(3) 20000 MEDICAL DIAGNOSIS WASHINGTON UNIVERSITY IN ST LOUIS 1054 ONE BROOKINGS DRIVE ST LOUIS MO 63130 430653611 501(C)(3) 125000 MEDICAL DIAGNOSIS AND RESEARCH WESLEY NEUROLOGY CLINIC PC 800 CENTERVIEW PARKWAY STE 305 CORDOVA TN 38018 621499155 501(C)(3) 66850 MEDICAL DIAGNOSIS AND REGISTRY SUPPORT WILLIAM BEAUMONT HOSPITAL 3811 WEST 13 MILE ROAD SUITE 501 ROYAL OAK MI 48073 381459362 501(C)(3) 52450 MEDICAL DIAGNOSIS AND REGISTRY SUPPORT YALE UNIVERSITY PO BOX 1873 NEW HAVEN CT 06508 060646973 501(C)(3) 351372 MEDICAL DIAGNOSIS AND RESEARCH 153 10 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 1 0 0 0 0 0 0 0 0 ELLEN VOS PRESIDENT & CEO (JAN-OCT) 435559 0 0 0 387701 0 0 0 29947 0 853207 0 0 0 KAREN ANDREWS SEC. & CHIEF LEGAL OFFICER (JAN-OCT) 382063 0 0 0 0 0 0 0 0 0 382063 0 0 0 KATHY KAUFFMANN CHIEF STRATEGY DEVELOPMENT OFFICER 280232 0 45000 0 302 0 2077 0 35971 0 363582 0 0 0 MICHAEL KENNEDY TREASURER & CFO 279744 0 0 0 868 0 2077 0 28193 0 310882 0 0 0 KRISTIN STEPHENSON CHIEF ADVOCACY & CARE SERVICES OFFIC 227964 0 0 0 197 0 1269 0 30080 0 259510 0 0 0 JONATHON NAGLE CHIEF TECHNOLOGY OFFICER 211653 0 10000 0 131 0 1558 0 21373 0 244715 0 0 0 JEANNE ZUCKER SVP HEALTHCARE PARTNERSHIPS 230015 0 0 0 566 0 0 0 12760 0 243341 0 0 0 SHARON HESTERLEE CHIEF RESEARCH OFFICER 215051 0 0 0 302 0 1327 0 22716 0 239396 0 0 0 DEBORAH BARGE SVP, CHIEF FIELD OFFICER 234343 0 0 0 145 0 623 0 495 0 235606 0 0 0 JOSHUA ACKLEY VP OF PR & COMMUNICATIONS 219394 0 0 0 118 0 0 0 9711 0 229223 0 0 0 JENNIFER ALLEBACH SVP OF CAMP PROGRAMS (JAN-NOV) 199342 0 0 0 1355 0 1523 0 1168 0 203388 0 0 0 LINDSAY KASSOF SEC. & ASSOC LEGAL COUN (NOV-DEC) 169558 0 0 0 197 0 1212 0 14626 0 185593 0 0 0 PART I, LINE 4A ELLEN VOSS, OUTGOING PRESIDENT & CEO RECEIVED $350,000 SEVERANCE PAYMENT IN 2020. KAREN ANDREWS OFFICER 382063 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. KAREN ANDREWS ACTS AS OUR CHIEF LEGAL COUNSEL. 0 X 54 803597 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 RESOURCES DEPARTMENT IN CONJUNCTION WITH LEGAL. BOARD MEMBERS ARE REQUIRED TO SIGN AN CONFLICT OF INTEREST DISCLOSURE ANNUALLY. WHEN A CONFLICT OF INTEREST ARISES, THE PERSON WITH THE CONFLICT IS REQUIRED TO RECUSE HIS/HERSELF FROM THE MATTER AND DISCUSSION INVOLVED. FORM 990, PART VI, SECTION B, LINE 15 MDA HAS A COMPENSATION COMMITTEE OF THE GOVERNING BOARD THAT REVIEWS THE CEO AND EXECUTIVE TEAM COMPENSATION. A COMPENSATION STUDY IS COMPLETED BY AN INDEPENDENT CONSULTANT AND REVIEWED WITH THE COMPENSATION COMMITTEE. ANNUAL REVIEWS ARE COMPLETED AND CONTRACTS ARE AMENDED AS THEY EXPIRE. 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 ON MDA'S WEBSITE. FORM 990, PART XI, LINE 9: CHANGE IN UNRECOGNIZED BENEFIT PLAN COSTS -12,612,986. REFUND OF PREVIOUSLY REPORTED GRANTS 282,772. 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.