2022-08-02T11:15:50-05:00 2021-12-31 221478099 COHNREZNICK LLP 14 SYLVAN WAY PARSIPPANY NJ 070543801 990 2021-01-01 131665552 MUSCULAR DYSTROPHY ASSOCIATION INC MUSC 3122605900 161 N CLARK ST 3550 CHICAGO IL 60601 MICHAEL J KENNEDY CFO 3122605900 2022-07-29 1 MICHAEL KENNEDY 999009999 LORI ROTHE YOKOBOSKY CPA P01273422 9732283500 2022-07-27 3 AAL1 IAL1 2021 2022-09-23 18:48:47Z DR DONALD S WOOD 161 N CLARK ST 3550 CHICAGO IL 60601 67354758 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. 21 21 248 1206 789094 124760 51830703 60181680 0 0 14247084 3151404 -2370514 60906 63707273 63393990 15019770 13666745 0 0 31271925 20116776 0 0 22355542 22080747 19636115 68372442 53419636 -4665169 9974354 71915435 75564994 95625096 70843244 -23709661 4721750 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 14076243 7134393 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. 7730993 6499657 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. 5772023 32695 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. 27579259 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 0 1 0 0 0 0 0 0 0 0 1 73 0 1 248 1 1 1 0 0 0 0 1 1 0 0 0 0 0 0 X 21 21 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 JON VAN COTT VP OF FINANCE CONTROLLER 6467132020 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 CHRIS ROSA DIRECTOR 1.00 X 0 0 0 DAN FRIES 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 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 (DECD NOV. 2021) 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 MATT PLUMMER DIRECTOR 1.00 X 0 0 0 NANCY KINDELAN DIRECTOR 1.00 X 0 0 0 STEVE FARELLA CHAIRMAN 5.00 X 0 0 0 VICTOR WRIGHT DIRECTOR 1.00 X 0 0 0 DONALD WOOD PRESIDENT & CEO 50.00 X 434363 0 23165 LINDSAY KASSOF SEC. & ASSOC LEGAL COUNSEL 50.00 X 175868 0 15775 MICHAEL KENNEDY TREASURER & CFO 50.00 X 290169 0 30739 BRIAN BEIRNE VP OF MULTI-CHANNEL MARKETING 50.00 X 187737 0 37966 JOSHUA ACKLEY VP OF PR & COMMUNICATIONS 50.00 X 219790 0 4064 KATHY KAUFFMANN JAN-AUG CHIEF STRATEGY DEVELOPMENT 50.00 X 216777 0 24038 KRISTINE WELKER CHIEF OF STAFF 50.00 X 263684 0 4873 SHARON HESTERLEE CHIEF RESEARCH OFFICER 50.00 X 216489 0 25465 2004877 0 166085 38 0 1 0 KEITH GORDON 30 WEST 15TH STREET SUITE 4N NEW YORK NY 10011 MARKETING COST 218305 1 248583 17209241 8989377 33734479 63421 60181680 864066 864066 104363 104363 5054391 2650029 117024 2404362 -117024 2287338 2287338 361164 17209241 1193715 -832551 -832551 QUEST ADVERTISING 541800 789094 789094 789094 63393990 0 789094 2423216 12261585 12261585 1405160 1405160 958540 414413 34071 510056 14433024 6239939 513010 7680075 228847 98939 8134 121774 3355950 1450904 119284 1785762 1140415 493044 40535 606836 268282 82784 15895 169603 128666 128666 486336 486336 275911 275911 2234532 465578 26254 1742700 2513406 775561 148916 1588929 4248924 734383 346946 3167595 2689572 1454268 339599 895705 1602216 4901 630888 966427 115897 7908 53366 54623 2244 153 1033 1058 199898 29524 13988 156386 990442 356735 633707 398818 58904 27907 312007 MISCELLANEOUS EXPENSES 1811030 267483 126725 1416822 EVENT EXPENSES 1669941 490757 1179184 53419636 27579259 3484835 22355542 X 3730653 537347 909165 2284141 4348343 7912128 3540042 3720119 4426491 3621220 4398695 2183933 6781878 3286231 1900018 3495647 53276935 53532735 1074301 24911 24911 71915435 75564994 4847691 5293050 7681991 5380356 555933 2265058 13000000 10500000 69539481 47404780 95625096 70843244 X -27557359 980444 3847698 3741306 -23709661 4721750 71915435 75564994 X 9974354 3478512 14978545 X X 0 1 X 1 0 X 113962253 103881886 99904218 51829703 60181680 429759740 113962253 103881886 99904218 51829703 60181680 429759740 429759740 1920477 1548677 1552285 1042846 968429 7032714 298749 373297 286145 410505 789094 2157790 8664556 7167108 2994445 1065881 361164 20253154 459203398 0.93590 0.92500 X SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: OTHER REVENUE - 2017 AMOUNT: $ 347,946. SPECIAL EVENTS - 2017 AMOUNT: $ 7,942,063. 2018 AMOUNT: $ 6,990,769. 2019 AMOUNT: $ 2,928,946. 2020 AMOUNT: $ 1,061,931. 2021 AMOUNT: $ 361,164. GAMING EVENTS - 2017 AMOUNT: $ 374,547. 2018 AMOUNT: $ 176,339. 2019 AMOUNT: $ 65,499. 2020 AMOUNT: $ 3,950. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 486336 486336 26546519 27032855 1000000 250000 0 0 1000000 1000000 1000000 1000000 4000000 6000000 546855 411778 628981 486336 2073950 250000 250000 250000 250000 1000000 1500000 X X X 0 684320 113304 96308 701316 662010 148733 126423 684320 639479 150206 127675 662010 790985 -43248 108258 639479 477155 259816 54014 790985 1.00000 0 0 28283 19328 8955 6753595 3266903 3486692 3495647 ACCRUED PENSION COST 45337427 PAYCHECK PROTECTION PROGRAM LOAN 2067353 47404780 X 80742972 3478512 14029357 17507869 63235103 275911 -117024 158887 63393990 52311561 117024 117024 52194537 275911 949188 1225099 53419636 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, 2021, 2020, 2019, 2018 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 14,432,141. FUNDRAISING EXPENSES -402,784. PART XI, LINE 4B - OTHER ADJUSTMENTS: LOSS ON DISPOSAL OF FIXED ASSETS -117,024. PART XII, LINE 2D - OTHER ADJUSTMENTS: LOSS ON DISPOSAL OF FIXED ASSETS 117,024. PART XII, LINE 4B - OTHER ADJUSTMENTS: REFUND OF PREVIOUSLY REPORTED GRANTS 546,404. FUNDRAISING EXPENSES 402,784. 0 EAST ASIA AND THE PACIFIC - AUSTRALIA, BRUNEI, BURMA, CAMBODIA, 0 0 PROGRAM SERVICES RESEARCH GRANT 172568 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM 0 0 PROGRAM SERVICES RESEARCH GRANT 1064235 NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES 0 0 PROGRAM SERVICES RESEARCH GRANT 134071 SOUTH AMERICA - ARGENTINA, BOLIVIA, BRAZIL, CHILE, COLUMBIA, ECUADOR, 0 0 PROGRAM SERVICES RESEARCH GRANT 34286 0 0 0 0 0 0 1405160 0 1405160 EAST ASIA AND THE PACIFIC - AUSTRALIA, BRUNEI, BURMA, CAMBODIA, RESEARCH 172568 CHECK/WIRE 0 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM RESEARCH 1064235 CHECK/WIRE 0 NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES RESEARCH 134071 CHECK/WIRE 0 SOUTH AMERICA - ARGENTINA, BOLIVIA, BRAZIL, CHILE, COLUMBIA, ECUADOR, RESEARCH 34286 CHECK/WIRE 0 26 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. PART III ACCOUNTING METHOD: SPECIAL EVENTS 12243927 11928601 315326 47337 114408 79165 38396 34839 DISTINGUISHED EVENTS 5326478 5280640 45838 197991 394234 224773 46310 16262 17570405 17209241 361164 245328 508642 303938 84706 51101 1193715 -832551 1 ACURASTEM INC 605 E HUNTINGTON DR SUITE 103 MONROVIA CA 91016 811640548 C CORP 50000 0 RESEARCH ANN AN ROBERT H LURIE CHILDRENS - HOSPITAL OF CHICAGO 225 E CHICAGO BOX 4 CHICAGO IL 60611 362170833 501(C)(3) 50000 0 MEDICAL DIAGNOSIS ARKANSAS CHILDREN'S HOSPITAL 1 CHILDRENS WAY SLOT 512-15 LITTLE ROCK AR 72202 710236857 501(C)(3) 10000 0 MEDICAL DIAGNOSIS ARKANSAS CHILDREN'S RESEARCH INSTITUTE 13 CHILDRENS WAY LITTLE ROCK AR 72202 710694931 501(C)(3) 5550 0 MOVR REGISTRY SUPPORT BAYCARE MEDICAL GROUP 300 PARK PLACE BLVD SUITE 170 CLEARWATER FL 33759 593140335 501(C)(3) 12500 0 MEDICAL DIAGNOSIS BAYLOR COLLEGE OF MEDICINE ONE BAYLOR PLAZA MS BCM 310 HOUSTAN TX 77030 741613878 C CORP 121773 0 RESEARCH BILLINGS CLINIC FOUNDATION PO BOX 31031 BILLINGS MT 59107 810407289 501(C)(3) 10000 0 MEDICAL DIAGNOSIS AND REGISTRY SUPPORT BILLINGS CLINIC RESEARCH ATTN KATHY WILKINSON 801 NORTH 29TH BILLING BILLINGS MT 59101 810407289 501(C)(3) 6400 0 MOVR REGISTRY SUPPORT BOARD OF REGENTS NSHE OBO UNIVERSITY OF NEVADA RENO CONTROLLERS OFFICE MAIL STOP 0124 RENO NV 89557 886000024 501(C)(3) 96667 0 RESEARCH BOARD OF REGENTS OF THE UNIVERSITY OF OKLAHOMA HEALTH SCIENCES CENTER 865 RESEARCH PARKWAY URP865-450 OKLAHOMA OK 73104 731563627 501(C)(3) 142308 0 RESEARCH BOARD OF TRUSTEES OF SOUTHERN ILLINOIS UNIVERSITY PO BOX 19616 SPRINGFIELD IL 62794 376005961 501(C)(3) 10000 0 MEDICAL DIAGNOSIS AND REGISTRY SUPPORT BRIGHAM AND WOMENS HOSPITAL RESEARCH PO BOX 3149 BOSTON MA 02241 042312909 501(C)(3) 30000 0 MEDICAL DIAGNOSIS BROWN UNIVERSITY OFFICE OF SPONSORED PROJECTS - BROWN UNIVERSITY 350 EDDY STREET BOX 1929 PROVIDENCE RI 02912 050258809 501(C)(3) 13030 0 RESEARCH CALIFORNIA PACIFIC MED CTR FOUNDATION 2015 STEINER STREET 2ND FL SAN 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SUPPORT CHILDRENS NATIONAL MEDICAL CENTER 111 MICHIGAN AVENUE NW WASHINGTON DC 20010 521640403 501(C)(3) 25000 0 MEDICAL DIAGNOSIS CHILDREN'S RESEARCH INSTITUTE (CNMC) 111 MICHIGAN AVENUE NW WASHINGTON DC 20010 521654453 501(C)(3) 76190 0 RESEARCH CHILDRENS SPECIALTY GROUP PLLC 811 REDGATE AVENUE NORFOLK VA 23507 540506321 501(C)(3) 6925 0 MOVR REGISTRY SUPPORT CINCINNATI CHILDREN'S HOSPITAL MEDICAL CENTER 3333 BURNET AVE CINCINNATI OH 45229 310833963 501(C)(3) 93990 0 MEDICAL DIAGNOSIS, RESEARCH AND REGISTRY SUPPORT CLINICAL NEUROLOGY PC4221 S WESTERN SUITE 5010 OKLAHOMA CITY TX 73109 412141136 501(C)(3) 75000 0 MEDICAL DIAGNOSIS CONNECTICUT CHILDRENS MEDICAL CENTER 282 WASHINGTON STREET HARTFORD CT 06106 060646755 501(C)(3) 13333 0 MEDICAL DIAGNOSIS COOK CHILDRENS MEDICAL CENTER 801 SEVENTH AVENUE FORT WORTH TX 76104 752051646 501(C)(3) 5525 0 MOVR REGISTRY SUPPORT DARTMOUTH-HITCHCOCK CLINIC ONE MEDICAL CENTER DRIVE LEBANON NH 03756 222715483 501(C)(3) 15000 0 MOVR REGISTRY SUPPORT 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CONTINUED FUNDING FOR THE PERIOD OF THE GRANT IS CONTINGENT UPON SUBMISSION TO, AND APPROVAL BY, MDA OF ANNUAL PROGRESS AND ACTIVITY REPORTS AND EXPENDITURE REPORTS FROM ALL GRANTEES. IF SUCH REPORTS ARE NOT RECEIVED, OR ARE DEEMED UNSATISFACTORY, MDA MAY OPT TO SUSPEND OR CANCEL FUNDING FOR THE GRANT. X X X X 1 0 0 0 0 0 0 0 0 DONALD WOOD PRESIDENT & CEO 434363 0 0 0 0 0 0 0 23165 0 457528 0 0 0 MICHAEL KENNEDY TREASURER & CFO 290169 0 0 0 0 0 3462 0 27277 0 320908 0 0 0 KRISTINE WELKER CHIEF OF STAFF 263684 0 0 0 0 0 3462 0 1411 0 268557 0 0 0 SHARON HESTERLEE CHIEF RESEARCH OFFICER 216489 0 0 0 0 0 2654 0 22811 0 241954 0 0 0 KATHY KAUFFMANN JAN-AUG CHIEF STRATEGY DEVELOPMENT 193700 0 0 0 23077 0 208 0 23830 0 240815 0 0 0 BRIAN BEIRNE VP OF MULTI-CHANNEL MARKETING 187737 0 0 0 0 0 1673 0 36293 0 225703 0 0 0 JOSHUA ACKLEY VP OF PR & COMMUNICATIONS 219790 0 0 0 0 0 0 0 4064 0 223854 0 0 0 LINDSAY KASSOF SEC. & ASSOC LEGAL COUNSEL 175868 0 0 0 0 0 2135 0 13640 0 191643 0 0 0 PART I, LINE 4A KATHY KAUFFMANN, CHIEF STRATEGY DEVELOPMENT RECEIVED $23,077 SEVERANCE PAYMENT IN 2021. X 1004 63421 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 14,432,141. REFUND OF PREVIOUSLY REPORTED GRANTS 546,404. 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.