2017-11-14T17:02:31-06:00 2016-12-31 271728945 PKF O'CONNOR DAVIES LLP 3001 SUMMER STREET 5TH FL EAST STAMFORD CT 06905 990 2016-01-01 061504413 THE MULTIPLE MYELOMA RESEARCH FOUNDATION INC MULT 2039721250 383 MAIN AVE NO 5TH FL NORWALK CT 06851 ROBERT MIANI TREASURER/CFO 2039721250 2017-11-14 1 GARRETT M HIGGINS P00543209 2033232400 2017-11-10 65.51.112.58 2017-11-14 08:42:59 ES P 45D10729E84C80409783239EA0C370A8A08632B7 45D10729E84C80409783239EA0C370A8A08632B7 2016 2017-02-10 21:41:12Z PAUL GIUSTI 383 MAIN AVE NO 5TH FL NORWALK CT 06851 40046048 0 X WWW.THEMMRF.ORG X 1997 CT SEE SCHEDULE O 19 17 49 300 0 0 29215754 37196531 3055562 2337395 134853 216547 -3509760 -3637196 28896409 36113277 5454474 3824848 0 0 5342402 6235074 254525 131600 2264024 18586471 17068952 29637872 27260474 -741463 8852803 22963398 37562966 6024632 11815941 16938766 25747025 X AS A PATIENT-FOUNDED ORGANIZATION, THE MMRF STANDS TOGETHER WITH THOSE WHO ARE BATTLING MULTIPLE MYELOMA. AT THE SAME TIME, WE STAND APART WITH OUR INNOVATIVE APPROACH. WE GENERATE, INTERPRET, AND ACTIVATE THE LARGEST COLLECTION OF HIGH-QUALITY DATA, ACCESSIBLE TO ALL, AS WELL AS ORCHESTRATE THE PEOPLE, THE PROGRAMS, AND THE TECHNOLOGIES NECESSARY TO SPEED THE DISCOVERY OF A CURE - FOR EVERY PATIENT. 0 0 5260910 THE MMRF LONGITUDINAL STUDY (COMMPASS) COMMENCED IN 2011 AND HAS BEEN EXTENDED THROUGH 2023. MMRF IS THE SPONSOR OF A PERSONALIZED MEDICINE INITIATIVE IN WHICH 1,153 NEWLY DIAGNOSED PATIENTS HAVE BEEN ENROLLED TO DATE THROUGH 108 SITES (I.E., HOSPITALS, ACADEMIC MEDICAL CENTERS AND OTHER COMMUNITY HEALTH CENTERS) ACROSS NORTH AMERICA AND EUROPE. THIS IS AN OBSERVATIONAL STUDY, RATHER THAN AN INTERVENTIONAL ONE WITH EXPERIMENTAL DRUGS BEING TESTED. BIOSPECIMENS (LIKE BLOOD AND BONE MARROW SAMPLES) ARE COLLECTED FROM THE PATIENTS PERIODICALLY OVER THE COURSE OF THEIR TREATMENT ALONG WITH CORRELATING CLINICAL DATA. THE STANDARD OF CARE (I.E., DRUGS AND TREATMENT) FOR EACH PATIENT IS DETERMINED BY SUCH PATIENT'S PERSONAL PHYSICIAN. THE TISSUE SAMPLES COLLECTED ARE PLACED IN A BIOBANK. AN UNRELATED, THIRD PARTY, NOT-FOR-PROFIT BIOMEDICAL RESEARCH INSTITUTE THEN PERFORMS LABORATORY TESTS ON A PORTION OF EACH OF THE SAMPLES RESULTING IN GENOMIC DATA ABOUT EACH PATIENT. OUR GOAL IS TO BUILD AND ANALYZE THE LARGEST FULLY ACCESSIBLE CLINICAL-GENOMIC DATASET OF ANY CANCER. THE FINDINGS CANNOT BE PATENTED AND ALL THE DATA ARE PLACED ON A PUBLIC PORTAL (THE MMRF RESEARCHER GATEWAY). THE RESULTING DATA REPOSITORY IS THE MOST COMPREHENSIVE CATALOG OF MULTIPLE MYELOMA AND CONTAINS THE GREATEST AMOUNT OF WHOLE GENOME SEQUENCING DATA OF ANY CANCER, ACCESSIBLE TO ANY RESEARCHER IN THE WORLD. IT WILL PROVIDE FAR MORE INFORMATION THAN IS AVAILABLE FROM CURRENT CANCER TISSUE BANKS THAT TYPICALLY INCLUDE ONLY ONE SAMPLE PER PATIENT.THE MMRF CONTINUES TO OPERATE THE COMMUNITY GATEWAY WHICH ALLOWS MYELOMA PATIENTS, INCLUDING THOSE ENROLLED IN THE COMMPASS STUDY, TO OBTAIN INFORMATION REGARDING TREATMENTS AND TRIALS THAT ARE SPECIFIC TO THEIR NEEDS.IN 2015 COMMPASS WAS CLOSED TO NEW ENROLLMENT WITH THE AFOREMENTIONED 1,153 PATIENTS WHO ARE BEING FOLLOWED FOR A PERIOD OF 8 YEARS UNTIL 2023. IN DECEMBER 2016, THE MMRF LAUNCHED A SIMILAR SAMPLE/DATA SHARING COLLABORATION WITH ECOG, (THE "EASTERN COOPERATIVE ONCOLOGY GROUP"), WHICH IS EXPECTED TO ACCRUE APPROXIMATELY AN ADDITIONAL 200 PATIENTS BY THE END OF 2017. 4875893 1320000 2337395 THE MULTIPLE MYELOMA RESEARCH CONSORTIUM, LLC. (MMRC) IS A SUBSIDIARY OF THE MULTIPLE MYELOMA RESEARCH FOUNDATION. THE MMRC IS THE FIRST RESEARCH MODEL THAT BRINGS TOGETHER 25 LEADING ACADEMIC CENTERS WITH INDUSTRY PARTNERS TO CONDUCT HIGHLY COLLABORATIVE PHASE 1 AND PHASE 2 CLINICAL TRIALS OF NOVEL COMPOUNDS AND COMBINATION TREATMENTS FOR MULTIPLE MYELOMA. ALL CENTERS ARE DRIVEN BY HIGHLY DEFINED METRICS THAT MANDATE ACCOUNTABILITY AND STRONGLY PROMOTE TEAM SCIENCE. THERE ARE CURRENTLY SEVERAL TREATMENTS IN THE PIPELINE, INCLUDING THOSE THAT TARGET GENOMIC MARKERS, IMMUNOTHERAPIES, AND NOVEL AGENTS AND MECHANISMS. IN 2016, MMRF THROUGH MMRC OPENED 6 CLINICAL TRIALS AND ENROLLED 269 PATIENTS ACROSS 19 TRIALS. FROM ITS INCEPTION, MMRC HAS ENROLLED OVER 2,000 PATIENTS ACROSS MORE THAN 70 CLINICAL TRIALS. 4758894 2504848 THE MULTIPLE MYELOMA RESEARCH FOUNDATION (MMRF) SUPPORTS INVESTIGATORS AND SCIENTIFIC PROJECTS THROUGH A NUMBER OF RESEARCH GRANTS. THE GOAL OF THIS INITIATIVE IS TO ACCELERATE THE DEVELOPMENT OF THERAPEUTIC APPROACHES FOR MYELOMA THROUGH OUR UNIQUE END-TO-END MODEL THAT SUPPORTS EFFORTS IN BASIC SCIENCE, OR TRANSLATION RESEARCH. 9414419 IN ADDITION TO THE PROGRAM EXPENSES DESCRIBED ABOVE, CORRESPONDING ACTIVITIES IN ALIGNMENT WITH THE OVERALL GOALS OF THE ORGANIZATION ARE ALSO SUPPORTED. THESE INCLUDE A PORTFOLIO OF CUTTING-EDGE RESEARCH PROGRAMS IN BASIC SCIENCE, WHICH IDENTIFIES NEW TARGETS THROUGH GENOMICS AND PROTEOMICS RESEARCH; VALIDATION STUDIES, WHICH IDENTIFY NEW COMPOUNDS AND COMBINATIONS IN RESEARCH MODELS BASED ON HIGH-PRIORITY TARGETS; AND INNOVATIVE CLINICAL TRIALS OF NOVEL AND COMBINATION TREATMENTS. ALSO, THE MMRF DEVELOPS AND IMPLEMENTS EXTENSIVE EDUCATIONAL PROGRAMMING FOR HEALTHCARE PROFESSIONALS AND FOR PATIENTS AND CAREGIVERS. 9414419 24310116 1 1 0 0 0 0 0 0 0 0 1 0 0 0 0 1 0 1 0 0 1 1 0 1 1 0 0 1 1 1 0 0 0 0 0 0 0 0 1 0 0 0 1 0 0 0 0 1 49 0 49 1 0 0 0 0 0 1 1 0 0 0 0 X 19 17 1 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 1 0 AK AL AR CA CO CT FL GA IL KS KY MD MA MI MN MS MO NH NJ NY NC OH OR PA RI SC TN UT VA WI WV X X X ROBERT MIANI 2036520207 383 MAIN AVE 5TH FLOOR NORWALK CT 06851 MICHAEL MORTIMER CHAIRMAN 2.00 X X 0 0 0 LORI TAUBER-MARCUS VICE CHAIRMAN 2.00 X X 0 0 0 WALTER CAPONE PRESIDENT & CEO (THRU 01/2016) 40.00 X X 466772 0 31586 PAUL GIUSTI PRESIDENT & CEO 40.00 X X 369231 0 2154 KATHY GIUSTI FOUNDER & STRATEGIC ADVISOR 30.00 X X 265669 0 0 CHARLES ORTNER BOARD MEMBER (THRU 09/2016) 2.00 X 0 0 0 DAVID LUCCHINO BOARD MEMBER 2.00 X 0 0 0 DAVID PARKINSON MD BOARD MEMBER 2.00 X 0 0 0 EUGENE GRISANTI BOARD MEMBER 2.00 X 0 0 0 GERALD MCDOUGALL BOARD MEMBER 2.00 X 0 0 0 JOEL MARCUS BOARD MEMBER 2.00 X 0 0 0 KAREN ANDREWS BOARD MEMBER 2.00 X 0 0 0 KENNETH ANDERSON MD BOARD MEMBER 2.00 X 0 0 0 MARIE PINIZZOTTO MD BOARD MEMBER 2.00 X 0 0 0 MERYL ZAUSNER BOARD MEMBER 2.00 X 0 0 0 MICHAEL REINERT BOARD MEMBER 2.00 X 0 0 0 W DANA LAFORGE BOARD MEMBER 2.00 X 0 0 0 WILLIAM BOWES BOARD MEMBER (THRU 12/2016) 2.00 X 0 0 0 WILLIAM MCKIERNAN BOARD MEMBER 2.00 X 0 0 0 STEVEN SHAK BOARD MEMBER 2.00 X 0 0 0 TOM CONHEENEY BOARD MEMBER 2.00 X 0 0 0 RODGER RINEY BOARD MEMBER 2.00 X 0 0 0 JAMES GRAZICK SENIOR DIR. OF FINANCE THRU 06/2016 10.00 X 117044 0 19859 ROBERT MIANI TREASURER/CFO 40.00 X 188912 0 8185 KAREN DIETZ SECRETARY/IN-HOUSE COUNSEL 40.00 X 113532 0 39416 ANNE QUINN YOUNG SVP OF MAREKTING 40.00 X 173691 0 32653 JOAN LEVY VP OF RESEARCH 40.00 X 188499 0 23633 DANIEL AUCLAIR SVP OF RESEARCH 40.00 X 207766 0 8557 SHARON SAIAS VP OF MARKETING 40.00 X 153769 0 22766 LAURA GILMAN VP OF EVENTS 40.00 X 144184 0 27653 ALICIA O'NEILL DIR. OF EVENTS BUSINESS DEVELOPMENT 40.00 X 144851 0 18228 PAUL BASSETT CLINICAL OPERATIONS MANAGER 40.00 X 117479 0 13531 KAREN WOOLLEY CLINICAL OPERATIONS MANAGER 40.00 X 131975 0 5264 MARGARET FURLONG CLINICAL OPERATIONS MANAGER 40.00 X 114551 0 29159 2897925 0 282644 18 0 1 0 PRECISION ONCOLOGY 200 ROUTE 21 NORTH SUITE 102 FLEMMING NJ 08822 CONTRACT RESEARCH 1982302 TGEN 445 N FIFTH STREET PHOENIX AZ 85004 TISSUE & GENE ANALYSIS 1842537 EVENT 360 55 E JACKSON BOULEVARD SUITE 1010 CHICAGO IL 60604 5K EVENT MANAGEMENT 770180 GNS HEALTHCARE INC 196 BROADWAY CAMBRIDGE MA 02139 MEDICAL SERVICES 700000 REDMEDED LLC 5 GREAT VALLEY PARKWAY SUITE 221 MALVERN PA 19355 CONTINUING MEDICAL EDUCATION 566752 31 11217629 25978902 10570839 37196531 RESEARCH & MARKETING 541610 2337395 2337395 2337395 216547 216547 295575 11217629 3932771 -3637196 -3637196 36113277 2337395 0 -3420649 3654848 3654848 30000 30000 140000 140000 2433693 1752260 219032 462401 3190641 2297261 287157 606223 66423 47825 5978 12620 156354 112575 14072 29707 387963 279333 34917 73713 42800 30816 3852 8132 131600 131600 769819 672838 15743 81238 2031316 1602446 556 428314 237069 183295 17285 36489 329870 130167 14573 185130 296900 213768 26721 56411 223959 163234 2344 58381 432432 430909 311 1212 341411 245816 30727 64868 142870 102867 12858 27145 LS STUDY 5260910 5260910 CLINICAL TRIALS 2554962 2554962 PATIENT & CLINICIAN OUT 1928629 1928629 GENOMIC ANALYSIS 1230000 1230000 1246005 1245357 208 440 27260474 24310116 686334 2264024 X 625671 203630 0 422041 1825623 5309396 4765233 12581245 6210420 4654461 1276372 1155770 578038 680846 1696609 1147768 824685 548841 6831107 11980487 550000 550000 101920 101920 22963398 37562966 551646 5255958 3969432 4583636 1503554 1976347 6024632 11815941 X 8534457 20489602 8404309 5257423 16938766 25747025 22963398 37562966 X 8852803 -29964 -14580 X X 0 1 X 1 0 X 18138503 19073387 29542535 29213174 37196531 133164130 18138503 19073387 29542535 29213174 37196531 133164130 32648934 100515196 186625 153236 139672 145653 216547 841733 134005863 12094109 0.75010 0.76140 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 40475 40475 0 222476 144926 77550 1433658 962367 471291 548841 X 36331269 -29964 394136 364172 35967097 146180 146180 36113277 27523010 394136 394136 27128874 131600 131600 27260474 PART X, LINE 2: THE ORGANIZATION RECOGNIZES THE EFFECT OF INCOME TAX POSITIONS ONLY IF THOSE POSITIONS ARE MORE LIKELY THAN NOT TO BE SUSTAINED. MANAGEMENT HAS DETERMINED THAT THE ORGANIZATION HAD NO UNCERTAIN TAX POSITIONS THAT WOULD REQUIRE FINANCIAL STATEMENT RECOGNITION OR DISCLOSURE. PART XI, LINE 4B - OTHER ADJUSTMENTS: WRITE-OFF OF UNCOLLECTIBLE PLEDGES REPORTED ON PART XI, LINE 9 14,580. RECLASS PROFESSIONAL FUNDRAISING FEES ON PART IX, LINE 11E 131,600. PART XII, LINE 4B - OTHER ADJUSTMENTS: RECLASS PROFESSIONAL FUNDRAISING FEES ON PART IX, LINE 11E 131,600. 1 EUROPE 0 0 GRANTMAKING 75000 NORTH AMERICA 0 0 GRANTMAKING 65000 0 0 0 0 0 0 140000 0 140000 EUROPE FELLOW RESEARCH GRANT 75000 CHECK NORTH AMERICA SITE INVESTMENT GRANT 65000 CHECK 2 0 0 0 0 0 0 PART I, LINE 2: MMRF RECEIVES PROGRESS REPORTS ON HOW THE GRANTED FUNDS ARE USED. MMRF CONDUCTS A REVIEW PROCESS, RANKING PROPOSED GRANTS AND AWARDING THE PROPOSED GRANT TO THE HIGHEST SCORING ORGANIZATION. X X X X X X 1 AARON CONSULTING 377 FIFTH AVE BROOKLYN NY 11215 SPECIAL FUNDRAISING EVENTS (CT, NY, AND IL) 1 3430077 131600 3298477 3430077 131600 3298477 AL AK AR CA CO CT FL GA IL KS KY ME MD MA MI MN MO MS NH NJ NY NC ND OK OR OH PA RI SC TN UT VA WA WI WV GREENWICH DINNER 1612821 1485246 127575 906 361318 502 320947 186579 CHICAGO DINNER 970855 899105 71750 101833 94112 54090 10 8929528 8833278 96250 2198 173083 55840 2581363 11513204 11217629 295575 3104 636234 502 470899 2822032 3932771 -3637196 SCHEDULE G, PART I, LINE 2B, COLUMN (V) MMRF SHALL MAKE FOUR PAYMENTS TO AARON CONSULTING ON JANUARY 1ST, APRIL 1ST, JULY 1ST, AND OCTOBER 1ST 2016 EACH IN THE AMOUNT OF $23,750 FOR THE FUNDRAISING COUNSEL AND CONNECTICUT AND NEW YORK EVENT MANAGEMENT SERVICES PROVIDED, AND TWO PAYMENTS TO AARON CONSULTING FOR THE CHICAGO EVENT MANAGEMENT SERVICES PROVIDED ON THE JANUARY 1ST, AND MARCH 1ST 2016 EACH IN THE AMOUNT OF $18,000. MMRF ALSO AGREES TO REIMBURSE AARON CONSULTING FOR ADDITIONAL FEES AND EXPENSES IT INCURS ON MMRF'S BEHALF, SUBJECT TO OTHER PROVISIONS. 1 BARBARA ANN KARMANOS CANCER HOSPITAL 4100 JOHN R STREET DETROIT MI 48201 201649466 501(C)(3) 72500 SITE INVESTMENT GRANT BAYLOR RESEARCH INSTITUTE - SAMMONS CANCER CENTER PO BOX 846275 DALLAS TX 75284 751921898 501(C)(3) 47500 SITE INVESTMENT GRANT CANCER RESEARCH INSTITUTE INC 55 BROADWAY SUITE 1802 NEW YORK NY 10006 131837442 501(C)(3) 200000 IMMUNOTHERAPY RFA GRANT, TRANSLATIONAL CORE PROGRAM GRANT CITY OF HOPE 1500 EAST DUARTE ROAD MEDICAL OFFICE BLD 3RD FLOOR DURATE CA 91010 953435919 501(C)(3) 172500 SITE INVESTMENT GRANT, IMMUNOTHERAPY RFA GRANT DANA FARBER CANCER INSTITUTE 44 BINEY ST BOSTON MA 02115 042263040 501(C)(3) 585000 SITE INVESTMENT GRANT, TRANSLATIONAL CORE PROGRAM GRANT EMORY UNIVERSITY 1365 CLIFTON RD BLDG C ATLANTA GA 30322 580566256 501(C)(3) 203700 SITE INVESTMENT GRANT, TRANSLATIONAL CORE PROGRAM GRANT HACKENSACK UNIVERSITY MEDICAL CENTER 360 ESSEX CENTER SUITE 302 HACKENSACK NJ 07601 221487576 501(C)(3) 52500 SITE INVESTMENT GRANT ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI ONE GUSTAVE L LEVY PLACE PO BOX 1075 NEW YORK NY 10029 136171197 501(C)(3) 470054 SITE INVESTMENT GRANT, TRANSLATIONAL CORE PROGRAM GRANT INDIANA UNIVERSITY 107 SOUTH INDIANA AVENUE BLOOMINGTON IN 47405 356001673 501(C)(3) 75000 FELLOW RESEARCH GRANT LEVINE CANCER CENTER 1021 MOREHEAD MEDICAL DRIVE CHARLOTTE NC 28204 560529945 501(C)(3) 50000 SITE INVESTMENT GRANT MAYO CLINIC 200 FIRST STREET SW ROCHESTER MN 55905 416011702 501(C)(3) 80000 SITE INVESTMENT GRANT MAYO CLINIC 4500 SAN PABLO ROAD JACKSONVILLE FL 32224 590714831 501(C)(3) 47500 SITE INVESTMENT GRANT MAYO CLINIC 13400 EAST SHEA BOULEVARD SCOTTSDALE AZ 85259 860800150 501(C)(3) 397500 SITE INVESTMENT GRANT, TRANSLATIONAL CORE PROGRAM GRANT MEMORIAL SLOAN-KETTERING CANCER CENTER 1275 YORK AVENUE NEW YORK NY 10065 131924236 501(C)(3) 120643 TRANSLATIONAL CORE PROGRAM GRANT OHIO STATE UNIVERSITY RESEARCH FOUNDATION B321 STARLING LOVING HALL 320 WEST 10TH AVENUE COLUMBUS OH 43210 316401599 501(C)(3) 70000 SITE INVESTMENT GRANT OREGON HEALTH & SCIENCE UNIVERSITY 3181 SW SAM JACKSON PARK ROAD PORTLAND OR 97239 931176109 501(C)(3) 75000 FELLOW RESEARCH GRANT SARAH CANNON RESEARCH INSTITUTE LLC 3322 WEST END ROAD SUITE 900 NASHVILLE TN 37203 201557751 65000 SITE INVESTMENT GRANT THE CLEVELAND CLINIC EDUCATIONAL FOUNDATION 9500 EUCLID AVENUE CLEVELAND OH 44195 340714553 501(C)(3) 75000 FELLOW RESEARCH GRANT THE UNIVERSITY OF CHICAGO 5841 S MARYLAND AVENUE MC 2115 CHICAGO IL 60637 362177139 501(C)(3) 80000 SITE INVESTMENT GRANT UCSF MYELOMA RESEARCH PROGRAM 1855 FOLSOM STREET ROOM 423 SAN FRANCISCO CA 94103 946036493 501(C)(3) 412500 PROGRAM GRANT & TRANSLATION CORE PROGRAM GRANT UNIVERSITY OF MARYLAND BALTIMORE COUNTY 650 WEST BALTIMORE STREET BALTIMORE MD 21201 526002033 501(C)(3) 75000 FELLOW RESEARCH GRANT UNIVERSITY OF MICHIGAN 4310 CANCER CENTER 1500 EAST MEDICAL CENTER DRIVE ANN ARBOR MI 48109 386006309 501(C)(3) 92500 SITE INVESTMENT GRANT VIRGINIA CANCER SPECIALISTS PC 8503 ARLINGTON BLVD SUITE 320 FAIRFAX VA 22031 541795091 50000 SITE INVESTMENT GRANT WASHINGTON UNIVERSITY IN ST LOUIS 660 E EUCLID AVENUE ST LOUIS MO 63110 430653611 501(C)(3) 85000 SITE INVESTMENT GRANT 23 2 RESEARCH AWARDS 2 30000 PART I, LINE 2: THERE ARE TWO DISTINCT TYPES OF GRANTS BEING AWARDED BY MMRF: CLASSICAL RESEARCH SUPPORT GRANTS AND CLINICAL/TRANSLATIONAL SITE SUPPORT GRANTS. CLASSICAL RESEARCH GRANTS GRANTS ARE REVIEWED BY AN EXTERNAL GROUP OF SCIENTISTS WITH THE APPROPRIATE AREAS OF EXPERTISE. SCIENTIFIC RATINGS USE THE CURRENT NIH SCORING SYSTEM OF 1-9 WITH 1 DEMONSTRATING THE HIGHEST SCIENTIFIC MERIT AND 9 BEING THE LOWEST. EACH PROPOSAL IS EVALUATED BY TWO INDEPENDENT OUTSIDE REVIEWERS AND THE SCORES ARE AVERAGED TOGETHER. MOST GRANTS CHOSEN SCORE AT LEAST A 2 OR ABOVE TO BE FUNDED. ONCE THE GRANTS ARE RATED EXTERNALLY, FINAL REVIEW IS DONE BY THE MMRF RESEARCH LEADERSHIP AND RECOMMENDATIONS ARE MADE TO THE CEO TO CONFIRM THE FINAL SELECTION. AFTER EACH GRANT TYPE AWARD IS MADE, AN AWARD LETTER IS SENT TO THE RECIPIENT AND AN EMAIL IS SENT TO THE CFO AND THE ASSOCIATE DIRECTOR OF FINANCE NOTIFYING THEM OF THE GRANTS AWARDED AND TO PROCEED WITH MAKING THE ACCRUAL FOR THE GRANT. ALSO, WE HAVE A CONFLICT OF INTEREST POLICY AND A COMMITTEE THAT REVIEWS ANY ISSUES. AFTER THE FIRST PAYMENT THE RESEARCHER SENDS IN THE REQUIRED PROGRESS REPORT AND TO RECEIVE REMAINING PAYMENTS. THE REPORT IS THEN REVIEWED BY OUTSIDE REVIEWERS TO ENSURE THAT THE APPROPRIATE PROGRESS WAS MADE ON THE STUDY. ONCE THE RESEARCH EMPLOYEE ASSIGNED TO GRANT COORDINATION RECEIVES NOTIFICATION FROM THE REVIEWERS, HE/SHE PREPARES A PAYMENT REQUEST FORM TO THE SR. VICE PRESIDENT OF RESEARCH TO SIGN AND THEN SEND IT TO ACCOUNTING FOR PROCESSING. CLINICAL/TRANSLATIONAL SITE SUPPORT GRANTS GRANT PROPOSALS TO SUPPORT MMRF/C CLINICAL OR TRANSLATIONAL SITES ARE REVIEWED BY MMRF RESEARCH STAFF AND LEADERSHIP IN COLLABORATION WITH OUTSIDE ADVISORS. SIMILAR TO CLASSICAL GRANTS, MMRF RESEARCH LEADERSHIP THEN MAKES RECOMMENDATIONS TO THE CEO FOR FINAL APPROVAL. AFTER EACH GRANT TYPE AWARD IS APPROVED, AN AWARD LETTER IS SENT TO THE RECIPIENT AND AN EMAIL IS SENT TO THE CFO AND THE ASSOCIATE DIRECTOR OF FINANCE NOTIFYING THEM OF THE GRANTS AWARDED AND TO PROCEED WITH MAKING THE ACCRUAL FOR THE GRANT. SUCH GRANTS ARE TYPICALLY RENEWED ANNUALLY OR MULTI-YEAR IN NATURE, AND CONTINUATION/RENEWAL IS AWARDED BASED ON MILESTONES ESTABLISHED UPON INITIATION OF THE PROGRAM. CONFLICT OF INTEREST POLICY AND COMMITTEE OVERSIGHT ALSO APPLY HERE. X X X X 1 0 0 0 0 0 0 1 0 WALTER CAPONE PRESIDENT & CEO (THRU 01/2016) 41673 0 50000 0 375099 0 1731 0 29855 0 498358 0 0 0 PAUL GIUSTI PRESIDENT & CEO 369231 0 0 0 0 0 2154 0 0 0 371385 0 0 0 KATHY GIUSTI FOUNDER & STRATEGIC ADVISOR 87295 0 177885 0 489 0 0 0 0 0 265669 0 0 0 ROBERT MIANI TREASURER/CFO 188912 0 0 0 0 0 0 0 8185 0 197097 0 0 0 KAREN DIETZ SECRETARY/IN-HOUSE COUNSEL 106383 0 7000 0 149 0 5403 0 34013 0 152948 0 0 0 ANNE QUINN YOUNG SVP OF MAREKTING 157555 0 16000 0 136 0 6550 0 26103 0 206344 0 0 0 JOAN LEVY VP OF RESEARCH 174280 0 13600 0 619 0 7629 0 16004 0 212132 0 0 0 DANIEL AUCLAIR SVP OF RESEARCH 187532 0 20000 0 234 0 8301 0 256 0 216323 0 0 0 SHARON SAIAS VP OF MARKETING 152300 0 1000 0 469 0 6317 0 16449 0 176535 0 0 0 LAURA GILMAN VP OF EVENTS 132822 0 11200 0 162 0 6282 0 21371 0 171837 0 0 0 ALICIA O'NEILL DIR. OF EVENTS BUSINESS DEVELOPMENT 134428 0 10000 0 423 0 4395 0 13833 0 163079 0 0 0 PART I, LINE 4A WALTER CAPONE, PRESIDENT & CEO, RECEIVED A SEVERANCE PAYMENT IN THE AMOUNT OF $375,000, WHICH WAS INCLUDED IN HIS 2016 W-2. PART I, LINE 7 THE FOLLOWING EMPLOYEES RECEIVED A BONUS FROM THE ORGANIZATION. EACH BONUS WAS BASED ON THE DISCRETION OF THE COMPENSATION COMMITTEE OF THE BOARD OF DIRECTORS. EACH BONUS WAS BASED UPON A REVIEW OF THE INDIVIDUAL'S PERFORMANCE, AND APPROVED BY THE COMPENSATION COMMITTEE PRIOR TO BEING AWARDED. KATHY GIUSTI, FOUNDER & STRATEGIC ADVISOR $177,885 WALTER CAPONE, PRESIDENT & CEO $50,000 JAMES GRAZICK, SENIOR DIRECTOR OF FINANCE $25,300 KAREN DIETZ, SECRETARY & IN-HOUSE COUNSEL $7,000 ANNE QUINN YOUNG, SENIOR VP OF MARKETING $16,000 DANIEL AUCLAIR, SENIOR VP OF RESEARCH $20,000 SHARON SAIAS, VP OF MARKETING $1,000 JOAN LEVY, VP OF RESEARCH $13,600 LAURA GILMAN, VP OF EVENTS $11,200 ALICIA O'NEIL, DIRECTOR OF EVENTS BUSINESS DEVELOPMENT & PARTNERSHIPS $10,000 PAUL BASSETT, CLINICAL OPERATIONS MANAGER $5,000 KAREN WOOLLEY, CLINICAL OPERATIONS MANAGER $2,300 MARGARET FURLONG, CLINICAL OPERATIONS MANAGER $4,100 X 36 10570839 FAIR MARKET VALUE 0 0 1 0 PART I, COLUMN (B): COLUMN (B) REPORTS THE NUMBER OF CONTRIBUTORS. FORM 990, PART I, LINE 1: MMRF ACCOMPLISHMENTS FOR 2016 THE MMRF EXPERIENCED ONE OF ITS MOST SUCCESSFUL YEARS EVER, WITH THE FOLLOWING ACCOMPLISHMENTS: -SIX NEW INNOVATIVE CLINICAL TRIALS WERE LAUNCHED BY THE MULTIPLE MYELOMA RESEARCH CONSORTIUM WITH TWO FOCUSED ON MOLECULARLY TARGETED PATIENT POPULATIONS. -IN 2016, THE MMRC ENROLLED 269 PATIENTS IN 18 ACTIVE TRIALS WHICH EXCEEDED 2016 ENROLLMENT PROJECTIONS BY 12%. -982 COMMPASS PATIENTS HAVE HAD THEIR BASELINE MOLECULAR PROFILES COMPLETED; 106 HAD THEIR RELAPSE SAMPLES SEQUENCED AND RESULTS WERE RETURNED TO THE TREATING PHYSICIAN. -95 RELAPSED/REFRACTORY MM PATIENTS HAVE HAD THEIR MOLECULAR PROFILES COMPLETED THROUGH THE MMRF MOLECULAR PROFILING INITIATIVE AT UNIVERSITY OF MICHIGAN; RESULTS WERE RETURNED TO THE TREATING PHYSICIAN. -THE MMRF TRANSLATIONAL NETWORK COLLABORATED WITH BIOTECH/PHARMA PARTNERS TO EVALUATE IMMUNE PROFILING OF EARLY DISEASE, MINIMAL RESIDUAL DISEASE, AND DEVELOPMENT OF NOVEL BIOMARKERS AND VALIDATION OF NEW DRUG TARGETS. FORM 990, PART VI, SECTION A, LINE 2 KATHY GIUSTI, FOUNDER & STRATEGIC ADVISOR, KAREN ANDREWS, BOARD MEMBER, AND PAUL GIUSTI, PRESIDENT & CEO, ALL HAVE A FAMILY RELATIONSHIP. FORM 990, PART VI, SECTION B, LINE 11B THE FORM 990 IS FIRST REVIEWED WITH THE CEO OF THE FOUNDATION. ONCE REVIEWED WITH THE CEO, THE FORM 990 IS EMAILED TO EACH BOARD MEMBER. EACH BOARD MEMBER REVIEWS THE FORM 990 AND IF ANY QUESTIONS ARISE, THEY ARE COMMUNICATED TO THE FOUNDATION AND ADDRESSED. AFTER ALL QUESTIONS ARE ADDRESSED, THE FORM 990 IS SUBMITTED TO THE IRS. FORM 990, PART VI, SECTION B, LINE 12C DUTY TO DISCLOSE A POTENTIAL CONFLICT OF INTEREST: ANY INTERESTED PERSON MUST DISCLOSE THE EXISTENCE OF HIS OR HER FINANCIAL INTEREST TO THE BOARD OR CONFLICTS COMMITTEE AND MUST BE GIVEN THE OPPORTUNITY TO DISCLOSE ALL MATERIAL FACTS TO THE BOARD, MEMBERS OF THE CONFLICTS COMMITTEE AND ALL MEMBERS OF ANY COMMITTEE CONSIDERING THE PROPOSED CONTRACT OR TRANSACTION. DETERMINING WHETHER A CONFLICT OF INTEREST EXISTS: AFTER DISCLOSURE OF THE FINANCIAL INTEREST AND ALL MATERIAL FACTS, AND AFTER ANY DISCUSSION WITH THE INTERESTED PERSON, THE INTERESTED PERSON SHALL LEAVE THE BOARD OR CONFLICTS COMMITTEE MEETING WHILE THE DETERMINATION OF A CONFLICT OF INTEREST IS DISCUSSED AND VOTED UPON. THE REMAINING BOARD OR CONFLICT COMMITTEE MEMBERS, AS APPLICABLE, SHALL DECIDE IF A CONFLICT OF INTEREST EXISTS. PROCEDURES FOR ADDRESSING THE CONFLICT OF INTEREST: I. AN INTERESTED PERSON MAY MAKE A PRESENTATION AT THE BOARD OR CONFLICTS COMMITTEE MEETING, BUT AFTER SUCH PRESENTATION, HE OR SHE SHALL LEAVE THE MEETING DURING THE DISCUSSION OF, AND THE VOTE ON, THE CONTRACT OR TRANSACTION THAT RESULT IN THE CONFLICT OF INTEREST. II. THE CHAIR OF THE BOARD OR CHAIRPERSON OF THE CONFLICTS COMMITTEE SHALL, IF APPROPRIATE, APPOINT A DISINTERESTED PERSON OR APPOINT OR ESTABLISH AN ADVISORY COMMITTEE TO INVESTIGATE ALTERNATIVES TO THE PROPOSED CONTRACT OR TRANSACTION. AFTER EXERCISING DUE DILIGENCE, THE BOARD OR THE CONFLICTS COMMITTEE SHALL TAKE ALL REASONABLE STEPS TO DETERMINE WHETHER THE MMRF CAN OBTAIN A MORE ADVANTAGEOUS CONTRACT OR TRANSACTION WITH REASONABLE EFFORTS FROM A PERSON OR ENTITY THAT WOULD NOT GIVE RISE TO A CONFLICT OF INTEREST. IF A MORE ADVANTAGEOUS CONTRACT OR TRANSACTION IS NOT REASONABLY ATTAINABLE UNDER CIRCUMSTANCES THAT WOULD NOT GIVE RISE TO A CONFLICT OF INTEREST, THE BOARD OR CONFLICT COMMITTEE SHALL DETERMINE BY A MAJORITY VOTE, BUT NOT LESS THAN TWO, OF THE DISINTERESTED DIRECTORS OR MEMBERS THEREOF WHETHER THE CONTRACT OR TRANSACTION IS IN THE MMRF'S BEST INTEREST AND IS FAIR AND REASONABLE TO THE MMRF; PROVIDED, HOWEVER, IF SUCH CONTRACT OR TRANSACTION IS APPROVED BY DISINTERESTED DIRECTORS WHO DO NOT SATISFY A QUORUM OR VOTING REQUIREMENT APPLICABLE TO THE AUTHORIZATION OF THE ACTION BY REASON OF THE MMRF'S CERTIFICATE OF INCORPORATION, BYLAWS OR A PROVISION OF LAW, THE ACTION MUST BE INDEPENDENTLY APPROVED BY SUCH INTERESTED AND DISINTERESTED DIRECTORS AS SATISFY THE APPLICABLE QUORUM OR VOTING REQUIREMENT. VIOLATION OF THE CONFLICTS OF INTEREST POLICY: III. IF THE BOARD OR CONFLICTS COMMITTEE HAS REASONABLE CAUSE TO BELIEVE THAT A DIRECTOR, OFFICER OR COMMITTEE MEMBER HAS FAILED TO DISCLOSE ACTUAL OR POSSIBLE CONFLICTS OF INTEREST, IT SHALL INFORM SUCH PERSON OF THE BASIS FOR SUCH BELIEF AND AFFORD SUCH PERSON AN OPPORTUNITY TO EXPLAIN THE ALLEGED FAILURE TO DISCLOSE. IF, AFTER HEARING THE RESPONSE OF THE DIRECTOR, OFFICER OR COMMITTEE MEMBER AND MAKING SUCH FURTHER INVESTIGATION AS MAY BE WARRANTED IN THE CIRCUMSTANCES, THE BOARD OR CONFLICTS COMMITTEE DETERMINES THAT SUCH PERSON HAS IN FACT FAILED TO DISCLOSE AN ACTUAL OR POSSIBLE CONFLICT OF INTEREST, THE BOARD OR CONFLICTS COMMITTEE, AS APPLICABLE, SHALL TAKE APPROPRIATE DISCIPLINARY AND CORRECTIVE ACTION. FORM 990, PART VI, SECTION B, LINE 15 ALL SENIOR POSITIONS AND THEIR COMPENSATION ARE REVIEWED AND APPROVED BY THE HR COMMITTEE OF THE BOARD OF DIRECTORS. COMPENSATION FOR EMPLOYEES ARE BENCHMARKED AGAINST OTHER 501(C)(3)'S AND RESEARCH ORGANIZATIONS, THEN REVIEWED BY THE COMPENSATION COMMITTEE. THE COMPENSATION APPROVAL IS DOCUMENTED BY THE COMMITTEE. THIS PROCESS WAS LAST UNDERTAKEN IN 2016. FORM 990, PART VI, SECTION C, LINE 19 FINANCIAL STATEMENTS, GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY, FORM 990 AND FORM 1023 ARE MADE AVAILABLE FOR PUBLIC VIEWING UPON WRITTEN REQUEST AT MMRF'S HEADQUARTERS LOCATED AT 383 MAIN AVENUE, 5TH FLOOR, NORWALK, CT 06851. FORM 990 AND AUDITED FINANCIAL STATEMENTS ARE ALSO AVAILABE AT THE ORGANIZATION'S WEBSITE: WWW.THEMMRF.ORG FORM 990 IS AVAILABLE ON WWW.GUIDESTAR.ORG, WWW.CHARITYNAVIGATOR.ORG, AND WWW.ERI-NONPROFIT-SALARIES.COM FORM 990, PART XI, LINE 9: WRITE-OFF OF UNCOLLECTIBLE PLEDGES -14,580. FORM 990, PART XII, LINE 2C: THE MULTIPLE MYELOMA RESEARCH FOUNDATION, INC. AUDIT/FINANCE COMMITTEE RECOMMENDS THE AUDITOR TO THE BOARD, AND THE BOARD APPOINTS THE AUDITOR. THE BOARD ASSUMES RESPONSIBILITY FOR THE OVERSIGHT OF THE AUDIT OF ITS FINANCIAL STATEMENTS. THE POLICY FOR SELECTION AND OVERSIGHT OF THE INDEPENDENT AUDITORS HAS NOT CHANGED SINCE LAST YEAR. MULTIPLE MYELOMA RESEARCH FOUNDATION LLC 383 MAIN AVENUE 5TH FLOOR NORWALK CT 06851 471162865 TO SUPPORT ITS MEMBER'S CHARITABLE MISSION DE 0 0 THE MULTIPLE MYELOMA RESEARCH FOUNDATION INC MULTIPLE MYELOMA RESEARCH CONSORTIUM LLC 383 MAIN AVENUE 5TH FLOOR NORWALK CT 06851 471142650 FACILITATING OR SPONSORING CLINICAL TRIALS AND RELATED RESEARCH CT 2033373 753067 THE MULTIPLE MYELOMA RESEARCH FOUNDATION INC