2018-11-09T14:37:13-06:00 2017-12-31 271728945 PKF O'CONNOR DAVIES LLP 3001 SUMMER STREET 5TH FLOOR EAST STAMFORD CT 06905 990 2017-01-01 061504413 THE MULTIPLE MYELOMA RESEARCH FOUNDATION INC MULT 2039721250 383 MAIN AVE NO 5TH FL NORWALK CT 06851 ROBERT MIANI TREASURER/CFO 2039721250 2018-11-09 1 GARRETT M HIGGINS P00543209 2033232400 2018-11-09 65.51.112.58 2018-11-09 14:37:11 ES P DA39A3EE5E6B4B0D3255BFEF95601890AFD80709 9616F4B14A694591D1E716C270910E6FA5556DA3 2017 2019-02-21 02:37:17Z PAUL GIUSTI 383 MAIN AVE NO 5TH FL NORWALK CT 06851 57926726 0 X WWW.THEMMRF.ORG X 1998 CT SEE SCHEDULE O 19 17 51 390 0 0 37196531 44515691 2337395 3005435 216547 445834 -3637196 -2275935 36113277 45691025 3824848 8106761 0 0 6235074 6135807 131600 0 2394739 17068952 16294030 27260474 30536598 8852803 15154427 37562966 56487907 11815941 15606042 25747025 40881865 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 9065321 6857761 1997388 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.2017 CULMINATED WITH THE AWARDING OF GRANTS TOWARD THREE NEW PROGRAMS. IN DATA ANALYTICS & ANALYSIS, MMRF AWARDED $1 MILLION TO INVESTIGATORS FOR OUR ANSWER FUND, WHICH WILL LEVERAGE THE LANDMARK MMRF COMMPASS STUDY TO IDENTIFY THE NEXT GENERATION OF THERAPEUTIC TARGETS AND/OR PATHWAYS OR BIOMARKERS FOR HIGH-RISK MULTIPLE MYELOMA (MM) PATIENTS. IN IMMUNOTHERAPY, $7 MILLION WAS AWARDED TO CREATE THE IMMUNE NETWORKS OF EXCELLENCE. THESE MULTICENTER, AND MULTINATIONAL, RESEARCH PARTNERSHIPS OF WORLD-CLASS SCIENTISTS AND CLINICIANS WILL ACCELERATE RESEARCH INTO THE ROLE OF THE PATIENT IMMUNE SYSTEM IN MYELOMA BIOLOGY AND DISEASE PROGRESSION, AND CHARACTERIZE THE CHANGES IN THE IMMUNE SYSTEM ASSOCIATED WITH THE PATIENT'S RESPONSE OR RESISTANCE TO THERAPY, AND IDENTIFY AND DEVELOP NOVEL IMMUNOTHERAPIES AND IMMUNOTHERAPY STRATEGIES. THESE INVESTIGATIVE NETWORKS WILL ALSO COLLECT AND ANALYZE A WIDE RANGE OF KEY IMMUNOLOGICAL DATA FROM PATIENTS AT DIFFERENT DISEASE STAGES AND IMMUNOTHERAPIES THAT WILL BE THE BASIS OF IMMUNE DATABANK.THE THIRD NEW INITIATIVE IS THE MMRF PREVENTION PROJECT, WHICH FOCUSES ON DETERMINING WHY THE PRECURSOR CONDITIONS MGUS AND SMOLDERING (SMM) QUICKLY PROGRESS TO MM IN SOME PATIENTS AND HOW TO IDENTIFY THIS HIGH-RISK POPULATION. $4 MILLION WAS AWARDED TO FIVE INSTITUTIONS FOR WORK ON THE MMRF PREVENTION PROJECT. 5301242 1249000 3005435 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 2017, MMRF THROUGH MMRC OPENED 4 CLINICAL TRIALS AND ENROLLED 242 PATIENTS ACROSS 179 TRIALS. FROM ITS INCEPTION, MMRC HAS ENROLLED OVER 2,400 PATIENTS ACROSS MORE THAN 80 CLINICAL TRIALS. 4585896 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 CLINICO-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. SAMPLE/DATA SHARING COLLABORATIONS WITH GROUPS LIKE ECOG, (THE "EASTERN COOPERATIVE ONCOLOGY GROUP") ARE EXPECTED TO ACCRUE APPROXIMATELY AN ADDITIONAL 100 PATIENTS BY THE END OF 2018. 8720407 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. 8720407 27672866 1 1 0 0 0 0 0 0 0 0 1 0 0 0 0 1 0 1 0 0 1 1 0 0 1 0 0 1 0 1 0 0 0 0 0 0 0 0 1 0 0 0 1 0 0 0 0 1 62 0 51 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 PAUL GIUSTI PRESIDENT & CEO 45.00 X X 542600 0 12835 KATHY GIUSTI FOUNDER & STRATEGIC ADVISOR 45.00 X X 326032 0 1722 KENNETH ANDERSON MD BOARD MEMBER 2.00 X 0 0 0 KAREN ANDREWS BOARD MEMBER 2.00 X 0 0 0 TOM CONHEENEY BOARD MEMBER 2.00 X 0 0 0 RODNEY GILMORE BOARD MEMBER 2.00 X 0 0 0 EUGENE GRISANTI BOARD MEMBER (THRU 03/2017) 2.00 X 0 0 0 W DANA LAFORGE BOARD MEMBER 2.00 X 0 0 0 DAVID LUCCHINO BOARD MEMBER 2.00 X 0 0 0 JOEL MARCUS BOARD MEMBER (THRU 04/2017) 2.00 X 0 0 0 SUSAN MARVIN BOARD MEMBER 2.00 X 0 0 0 GERALD MCDOUGALL BOARD MEMBER 2.00 X 0 0 0 WILLIAM MCKIERNAN BOARD MEMBER 2.00 X 0 0 0 DAVID PARKINSON MD BOARD MEMBER 2.00 X 0 0 0 MARIE PINIZZOTTO MD BOARD MEMBER 2.00 X 0 0 0 MICHAEL REINERT BOARD MEMBER 2.00 X 0 0 0 RODGER RINEY BOARD MEMBER 2.00 X 0 0 0 STEVEN SHAK BOARD MEMBER 2.00 X 0 0 0 MERYL ZAUSNER BOARD MEMBER 2.00 X 0 0 0 ROBERT MIANI TREASURER/CFO 45.00 X 311083 0 21509 KAREN DIETZ SECRETARY/IN-HOUSE COUNSEL 45.00 X 125911 0 39157 ANNE QUINN YOUNG SVP OF MARKETING 45.00 X 223440 0 13178 DANIEL AUCLAIR SVP OF RESEARCH 45.00 X 221754 0 10368 LAURA GILMAN VP OF EVENTS 45.00 X 152016 0 30531 ALICIA O'NEILL DIR. OF EVENTS BUSINESS DEVELOPMENT 45.00 X 148279 0 19839 KAREN WOOLLEY CLINICAL OPERATIONS MANAGER 45.00 X 138268 0 6519 MARY DEROME DIR. OF MED. COMMS & EDUC. 45.00 X 132500 0 8778 MARGARET FURLONG ASSOC. DIR. OF CLINICAL OPS. 45.00 X 131258 0 34079 CHRISTOPHER WILLIAMS VP OF BUSINESS DEVELOPMENT 45.00 X 122711 0 5797 2575852 0 204312 16 0 1 0 TGEN 445 N FIFTH STREET PHOENIX AZ 85004 TISSUE & GENE ANALYSIS 2985717 PRECISION ONCOLOGY 200 ROUTE 21 NORTH SUITE 102 FLEMMING NJ 08822 CONTRACT RESEARCH 2081015 REDMEDED LLC 5 GREAT VALLEY PARKWAY SUITE 221 MALVERN PA 19355 CONTINUING MEDICAL EDUCATION 1887900 EVENT 360 55 E JACKSON BOULEVARD SUITE 1010 CHICAGO IL 60604 5K EVENT MANAGEMENT 1116343 PRICEWATERHOUSECOOPERS LLP PO BOX 7247-8001 PHILADELPHIA PA 19170 BUSINESS PLANNING AND CONSULTING 600394 34 10240735 34274956 1337923 44515691 RESEARCH & CLINICAL TRIALS 541610 3005435 3005435 3005435 373452 373452 1997388 1997388 7748635 7676253 72382 72382 72382 286125 10240735 4559448 -4273323 -4273323 45691025 5002823 0 -3827489 8006761 8006761 100000 100000 2032134 1381259 126242 524633 3438330 2337062 213599 887669 95485 64902 5932 24651 206189 140148 12809 53232 363669 247189 22592 93888 100500 68311 6243 25946 1352674 1211506 8709 132459 1040895 850407 414 190074 260571 188959 13522 58090 288690 151735 13859 123096 338329 229965 21018 87346 275052 211895 1598 61559 1145572 1138862 1290 5420 270850 155516 14901 100433 99599 67699 6187 25713 LS STUDY 4585896 4585896 CLINICAL TRIALS 3141667 3141667 PATIENT & CLINICIAN OUT 1769489 1769489 GENOMIC ANALYSIS 559110 559110 1065136 1064528 78 530 30536598 27672866 468993 2394739 5309396 14258907 12581245 13024327 4654461 6348349 1155770 2341764 680846 720523 1886273 1418618 548841 467655 11980487 18684405 550000 550000 101920 91977 37562966 56487907 5255958 6366096 4583636 7316928 1976347 1923018 11815941 15606042 X 20489602 34872587 5257423 6009278 25747025 40881865 37562966 56487907 15154427 -19587 0 X X 0 1 X 1 0 X 19073387 29542535 29213174 37196531 44515691 159541318 19073387 29542535 29213174 37196531 44515691 159541318 40195218 119346100 153236 139672 145653 216547 373452 1028560 160569878 12090724 0.74330 0.75010 X 40475 40475 0 226430 170038 56392 1619368 1208105 411263 467655 X 45966370 -19587 294932 275345 45691025 0 45691025 30831530 294932 294932 30536598 0 30536598 PART X, LINE 2: MMRF RECOGNIZES THE EFFECT OF INCOME TAX POSITIONS ONLY IF THOSE POSITIONS ARE MORE LIKELY THAN NOT TO BE SUSTAINED. MANAGEMENT HAS DETERMINED THAT MMRF HAD NO UNCERTAIN TAX POSITIONS THAT WOULD REQUIRE FINANCIAL STATEMENT RECOGNITION OR DISCLOSURE. 1 NORTH AMERICA 0 0 GRANTMAKING 100000 0 0 0 0 0 0 100000 0 100000 NORTH AMERICA SITE INVESTMENT GRANT, CORRELATIVE GRANT 100000 CHECK 1 0 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. GREENWICH DINNER 1550000 1412625 137375 759 388052 335252 247502 NEW YORK DINNER 667810 572435 95375 250 167195 82431 97542 40 8309050 8255675 53375 202 78650 50843 3110770 10526860 10240735 286125 1211 633897 468526 3455814 4559448 -4273323 1 BARBARA ANN KARMANOS CANCER HOSPITAL 4100 JOHN R STREET DETROIT MI 48201 201649466 501(C)(3) 48000 SITE INVESTMENT GRANT BAYLOR RESEARCH INSTITUTE - SAMMONS CANCER CENTER PO BOX 846275 DALLAS TX 75284 751921898 501(C)(3) 30000 SITE INVESTMENT GRANT BETH ISREAL DEACONESS MEDICAL CENTER 330 BROOKLINE AVENUE BOSTON MA 02215 042103881 501(C)(3) 1632000 IMMUNOTHERAPY RFA GRANT CITY OF HOPE 1500 EAST DUARTE ROAD MEDICAL OFFICE BLD 3RD FLOOR DURATE CA 91010 953435919 501(C)(3) 58000 SITE INVESTMENT GRANT DANA FARBER CANCER INSTITUTE 44 BINEY ST BOSTON MA 02115 042263040 501(C)(3) 1087500 SITE INVESTMENT GRANT, CORRELATIVE GRANT, FELLOW RESEARCH GRANT, ANSWER FUND, PREVENTION EMORY UNIVERSITY 1365 CLIFTON RD BLDG C ATLANTA GA 30322 580566256 501(C)(3) 553000 SITE INVESTMENT GRANT, ANSWER FUND HACKENSACK UNIVERSITY MEDICAL CENTER 360 ESSEX CENTER SUITE 302 HACKENSACK NJ 07601 221487576 501(C)(3) 58500 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) 164000 SITE INVESTMENT GRANT, FELLOW RESEARCH GRANT JOHNS HOPKINS MEDICAL INSTITUTIONS 3910 KESWICK ROAD NO N4327B BALTIMORE MD 21211 520595110 501(C)(3) 1500000 IMMUNOTHERAPY RFA GRANT LEVINE CANCER CENTER 1021 MOREHEAD MEDICAL DRIVE CHARLOTTE NC 28204 560529945 501(C)(3) 32500 SITE INVESTMENT GRANT MAYO CLINIC 200 FIRST STREET SW ROCHESTER MN 55905 416011702 501(C)(3) 57500 SITE INVESTMENT GRANT MAYO CLINIC 4500 SAN PABLO ROAD JACKSONVILLE FL 32224 590714831 501(C)(3) 35000 SITE INVESTMENT GRANT MAYO CLINIC 13400 EAST SHEA BOULEVARD SCOTTSDALE AZ 85259 860800150 501(C)(3) 42500 SITE INVESTMENT GRANT MEMORIAL SLOAN-KETTERING CANCER CENTER 1275 YORK AVENUE NEW YORK NY 10065 131924236 501(C)(3) 1325000 SITE INVESTMENT GRANT, IMMUNOTHERAPY RFA GRANT, RESEARCH GRANT OHIO STATE UNIVERSITY RESEARCH FOUNDATION B321 STARLING LOVING HALL 320 WEST 10TH AVENUE COLUMBUS OH 43210 316401599 501(C)(3) 62500 SITE INVESTMENT GRANT ROCKEFELLER UNIVERSITY 1230 YORK AVENUE NEW YORK NY 10065 131624158 501(C)(3) 100000 RESEARCH GRANT SARAH CANNON RESEARCH INSTITUTE LLC 3322 WEST END ROAD SUITE 900 NASHVILLE TN 37203 201557751 43000 SITE INVESTMENT GRANT THE TRANSLATIONAL GENOMICS RESEARCH INSTITUTE 445 N FIFTH STREET PHOENIX AZ 85004 753065445 501(C)(3) 75000 FELLOW RESEARCH GRANT THE UNIVERSITY OF CHICAGO 5841 S MARYLAND AVENUE MC 2115 CHICAGO IL 60637 362177139 501(C)(3) 52000 SITE INVESTMENT GRANT THE UNIVERSITY OF TEXAS MD ANDERSON CANCER CENTER 1515 HOLCOMBE HOUSTON TX 77030 746001118 STATE OF TEXAS 350000 RESEARCH GRANT TUFTS MEDICAL CENTER 800 WASHINGTON STREET BOX 468 BOSTON MA 02111 270440772 501(C)(3) 75000 FELLOW RESEARCH GRANT UCSF MYELOMA RESEARCH PROGRAM 1855 FOLSOM STREET ROOM 423 SAN FRANCISCO CA 94103 946036493 501(C)(3) 105761 SITE INVESTMENT GRANT, PROGRAM GRANT UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 W MARKHAM STREET SLOT 812 LITTLE ROCK AR 72205 716046242 STATE OF ARKANSAS 125000 SITE INVESTMENT GRANT, RESEARCH GRANT UNIVERSITY OF MICHIGAN 4310 CANCER CENTER 1500 EAST MEDICAL CENTER DRIVE ANN ARBOR MI 48109 386006309 501(C)(3) 62500 SITE INVESTMENT GRANT UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL 103 SOUTH BUILDING CAMPUS BOX 9100 CHAEL HILL NC 27599 566001393 501(C)(3) 75000 FELLOW RESEARCH GRANT UNIVERSITY OF TEXAS- SOUTHWESTERN MEDICAL CENTER 5323 HARRY HINES BOULEVARD DALLAS TX 75390 756002868 501(C)(3) 25000 SITE INVESTMENT GRANT VIRGINIA CANCER SPECIALISTS PC 8503 ARLINGTON BLVD SUITE 320 FAIRFAX VA 22031 541795091 35000 SITE INVESTMENT GRANT WASHINGTON UNIVERSITY IN ST LOUIS 660 E EUCLID AVENUE ST LOUIS MO 63110 430653611 501(C)(3) 97500 SITE INVESTMENT GRANT YALE UNIVERSITY 246 CHURCH STREET NEW HAVEN CT 06520 060646973 501(C)(3) 100000 RESEARCH GRANT 27 2 PART I, LINE 2: THERE ARE SEVERAL STEPS THAT LEAD UP TO INDIVIDUAL RESEARCH GRANTS BEING AWARDED: 1. THE OVERALL RESEARCH BUDGET IS PRESENTED TO THE PROGRAMMING COMMITTEE. THE BUDGET IS BROKEN DOWN INTO THREE MAIN CATEGORIES WHICH INCLUDE THE FOLLOWING GRANT TYPES: A) CLINIC: CLINICAL- SITE INVESTMENT GRANTS, CLINICAL FUNDING AGREEMENT GRANTS, PRECISION MEDICINE GRANTS B) LEARNING NETWORK: GATEWAYS, DATA ANALYSIS INITIATIVES, TRANSLATIONAL SITE INVESTMENTS GRANTS (MMRF TRANSLATIONAL NETWORK), TRANSLATIONAL AND IMMUNE PROGRAM GRANTS, RESEARCH FELLOW GRANTS. C) DATA BANK: MMRF-SPONSORED LONGITUDINAL MOLECULAR AND IMMUNE STUDIES (COMMPASS AND FOLLOW-ON REGISTRY/COMMPASS 2.0). THE BUDGET SPEND IS APPROVED BY THE PROGRAMMING COMMITTEE, AND THEN LATER THE BOARD GIVES FINAL APPROVAL FOR THE RESEARCH SPEND. 2. DURING THE YEAR, WE HAVE MONTHLY RESEARCH SPEND MEETINGS WITH THE CEO AND CFO TO DISCUSS PROGRESS ON MAKING THE AWARDS. ADDITIONALLY, ANY CHANGES OR REFORECASTS ARE DISCUSSED. IF THERE IS A CHANGE GREATER THAN $1M THEN WE MUST GO BACK TO THE PROGRAMMING COMMITTEE TO DISCUSS. 3. THERE ARE TWO DISTINCT TYPES OF GRANTS BEING AWARDED BY MMRF: CLASSICAL RESEARCH SUPPORT GRANTS AND CLINICAL/TRANSLATIONAL SITE SUPPORT GRANTS. THE ACTUAL AWARDS ARE MADE ACCORDING TO THE BELOW SCHEDULE: A. RESEARCH FELLOW AWARDS - QTR. 3 OR QTR. 4 B. CLINICAL AND TRANSLATIONAL SITE SUPPORT GRANTS - QTR. 4 C. OTHER GRANTS ARE MADE THROUGHOUT THE YEAR CLASSICAL RESEARCH GRANTS CLASSICAL RESEARCH GRANTS ARE AWARDED ON THE BASIS OF THE FOLLOWING PROCESS. 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 3 OR BETTER 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 ARE MULTI-YEAR IN NATURE. 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 0 0 0 0 0 0 0 1 0 PAUL GIUSTI PRESIDENT & CEO 415000 0 126000 0 1600 0 10800 0 2035 0 555435 0 0 0 KATHY GIUSTI FOUNDER & STRATEGIC ADVISOR 250000 0 75000 0 1032 0 0 0 1722 0 327754 0 0 0 ROBERT MIANI TREASURER/CFO 223787 0 79700 0 7596 0 10800 0 10709 0 332592 0 0 0 KAREN DIETZ SECRETARY/IN-HOUSE COUNSEL 103820 0 15000 0 7091 0 5766 0 33391 0 165068 0 0 0 ANNE QUINN YOUNG SVP OF MARKETING 185183 0 25000 0 13257 0 9008 0 4170 0 236618 0 0 0 DANIEL AUCLAIR SVP OF RESEARCH 196350 0 25000 0 404 0 8854 0 1514 0 232122 0 0 0 LAURA GILMAN VP OF EVENTS 133925 0 15000 0 3091 0 6584 0 23947 0 182547 0 0 0 ALICIA O'NEILL DIR. OF EVENTS BUSINESS DEVELOPMENT 128910 0 12000 0 7369 0 4488 0 15351 0 168118 0 0 0 MARGARET FURLONG ASSOC. DIR. OF CLINICAL OPS. 113634 0 10000 0 7624 0 5752 0 28327 0 165337 0 0 0 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. PAUL GIUSTI, PRESIDENT & CEO $126,000 KATHY GIUSTI, FOUNDER & STRATEGIC ADVISOR $75,000 ROBERT MIANI, CFO $79,700 KAREN DIETZ, SECRETARY & IN-HOUSE COUNSEL $15,000 ANNE QUINN YOUNG, SENIOR VP OF MARKETING $25,000 DANIEL AUCLAIR, SENIOR VP OF RESEARCH $25,000 LAURA GILMAN, VP OF EVENTS $15,000 ALICIA O'NEIL, DIRECTOR OF EVENTS BUSINESS DEVELOPMENT & PARTNERSHIPS $12,000 KAREN WOOLLEY, CLINICAL OPERATIONS MANAGER $7,500 MARY DEROME, DIRECTOR OF MEDICAL COMMUNICATIONS AND EDUCATION $5,500 MARGARET FURLONG, ASSOCIATE DIRECTOR OF CLINICAL OPERATIONS $10,000 X 42 1337923 AVG. SELLING PRICE 0 0 1 0 PART I, COLUMN (B): THE ORGANIZATION IS REPORTING THE NUMBER OF CONTRIBUTORS. FORM 990, PART I, LINE 1: MMRF ACCOMPLISHMENTS FOR 2017 THE MMRF HAS BUILT ON THE SUCCESSES OF 2016 AND HAD A BANNER YEAR IN 2017, WHICH INCLUDED THE LAUNCH OF 3 IMPORTANT MULTI-MILLION DOLLAR RESEARCH INITIATIVES: * FIVE NEW INNOVATIVE CLINICAL TRIALS WERE LAUNCHED BY THE MULTIPLE MYELOMA RESEARCH CONSORTIUM, BRINGING THE TOTAL NUMBER OF OPEN AND ENROLLING TRIALS TO 16. * IN 2017, THE MMRC ENROLLED 242 PATIENTS IN 16 ACTIVE TRIALS, WHICH EXCEEDED 2017 ENROLLMENT PROJECTIONS BY 10%. * 990 COMMPASS PATIENTS HAVE HAD THEIR BASELINE MOLECULAR PROFILES COMPLETED; 216 HAD THEIR RELAPSE SAMPLES SEQUENCED AND RESULTS WERE RETURNED TO THE TREATING PHYSICIAN. MORE THAN 25 ABSTRACTS RESULTING FROM COMMPASS DATA WERE PRESENTED AT THE AMERICAN SOCIETY OF HEMATOLOGY MEETING IN DECEMBER 2017; MORE THAN 60 COMMPASS PUBLICATIONS HAVE BEEN PUBLISHED TO DATE. * ALMOST 500 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. * 2017 PATIENT EDUCATION PROGRAMS REACHED OVER 6000 PATIENTS AND CAREGIVERS IN 2017. * THE MMRF LAUNCHED THREE IMPORTANT MULTI-YEAR, MULTI-MILLION DOLLAR RESEARCH INITIATIVES IN PRECISION MEDICINE: - THE IMMUNOTHERAPY INITIATIVE: THIS IS A 3-YEAR INVESTMENT IN CREATING ACADEMIC NETWORKS OF EXCELLENCE TO DEVELOP THE SCIENCE BEHIND PRECISION APPROACHES IN IMMUNOTHERAPY IN MYELOMA. EFFORTS WILL CENTER ON BUILDING A ROBUST IMMUNE DATA SET, SETTING DATA STANDARDS, AND ACCELERATING NEW AND PROMISING IMMUNE THERAPIES TO PATIENTS. - THE ANSWER FUND: THIS 3-YEAR EFFORT IS DESIGNED TO ENCOURAGE RESEARCHERS TO USE COMMPASS DATA TO ANSWER THE QUESTIONS THAT ARE MOST IMPORTANT TO THE MYELOMA COMMUNITY. THE FIRST QUESTION TO BE ANSWERED IS AROUND HIGH-RISK PATIENTS, HOW TO IDENTIFY THEM EARLIER AND MORE PRECISELY, AND HOW BEST TO TREAT THEM. THE SECOND QUESTION IS THE RESULT OF A CROWD SOURCING EFFORT. WE ASKED PATIENTS AND HEALTH CARE PROFESSIONALS TO TELL US THEIR MOST PRESSING ISSUES. THIS SECOND PROJECT WILL CENTER AROUND MAINTENANCE THERAPY, WHICH PROVED TO BE THE MOST POPULAR TOPIC AMONG THOSE WHO ANSWERED OUR SURVEY. - THE PREVENTION PROJECT: THIS IS A $4M EFFORT IN COLLABORATION WITH THE PERELMAN FAMILY FOUNDATION, WHICH FOCUSSES ON EARLY DETECTION AND ULTIMATELY, PREVENTION OF MYELOMA. 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 IN THE MINUTES BY THE COMMITTEE. THIS PROCESS WAS LAST UNDERTAKEN IN 2017. 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 OTHER SIMILAR WEBSITES. 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 4170977 1087704 THE MULTIPLE MYELOMA RESEARCH FOUNDATION INC