2023-10-30T15:36:30-05:00 2022-12-31 873231666 PKF O'CONNOR DAVIES ADVISORY LLC 3001 SUMMER STREET 5TH FLOOR EAST STAMFORD CT 06905 990 2022-01-01 061504413 THE MULTIPLE MYELOMA RESEARCH FOUNDATION INC MULT 2032290464 383 MAIN AVE 5TH FL NORWALK CT 06851 ROBERT MIANI TREASURER/CFO 2032290464 2023-10-30 1 ROBERT MIANI XXX-XX-XXXX 1 GARRETT M HIGGINS P00543209 2033232400 2023-10-30 3 AAL1 IAL1 2022 2023-04-26 12:10:37Z MICHAEL ANDREINI 383 MAIN AVE 5TH FL NORWALK CT 06851 138076621 0 X WWW.THEMMRF.ORG X 1998 CT SEE SCHEDULE O 17 16 80 459 0 0 37089868 42022114 2348850 2152800 2872478 670999 0 198561 42311196 45044474 6629658 4589741 0 0 11130870 10374937 0 0 4898025 19886535 23316052 37647063 38280730 4664133 6763744 85401847 89097661 28167047 25407747 57234800 63689914 X SEE SCHEDULE O 0 0 7028145 1363694 2345361 THE IMMUNE SYSTEM IS A CRITICAL FACTOR IN MYELOMA PROGNOSIS AND TREATMENT BECAUSE IT CAN DETECT AND DESTROY ABNORMAL CELLS, INCLUDING CANCER CELLS. TO ADVANCE OUR UNDERSTANDING OF HOW A MYELOMA PATIENT'S IMMUNE SYSTEM CHANGES DURING THE DEVELOPMENT OF THEIR DISEASE AND HOW IT IS AFFECTED BY THERAPY, WE ARE DEVELOPING AN IMMUNE FOCUSED DATABASE, CALLED THE MMRF IMMUNE ATLAS. IT UTILIZES PATIENT SAMPLES AND CLINICAL DATA FROM OUR GROUNDBREAKING COMMPASS STUDY - ONE OF THE LARGEST MYELOMA DATASETS IN THE PUBLIC DOMAIN. THE IMMUNE ATLAS IS DESIGNED TO DESCRIBE THE MYELOMA PATIENT IMMUNE SYSTEM FROM DISEASE DEVELOPMENT, THROUGH DIAGNOSIS, AND THE TREATMENT JOURNEY. THE INFORMATION, COLLECTED FROM HUNDREDS OF PATIENTS, WILL BE COMBINED WITH THE EXISTING GENOMIC AND CLINICAL DATA FROM COMMPASS TO DEVELOP A MORE COMPREHENSIVE PICTURE OF MYELOMA DISEASE BIOLOGY. THE INSIGHTS GENERATED THROUGH IMMUNE ATLAS WILL HELP GUIDE OPTIMAL TREATMENT APPROACHES FOR MYELOMA PATIENTS IN THE FUTURE. 3226047 3226047 0 THE MMRF CURECLOUD IS A FIRST-OF-ITS-KIND REGISTRY THAT COLLECTS GENOMIC AND CLINICAL INFORMATION TO INFORM BETTER TREATMENTS FOR PATIENTS. THE AGGREGATED DATA IS ALSO DESIGNED TO HELP RESEARCHERS DISCOVER NEW TARGETS FOR MYELOMA AND FORM HYPOTHESES FOR CLINICAL TRIALS.PATIENTS PARTICIPATING IN CURECLOUD CONTRIBUTE A BLOOD SAMPLE THAT IS SENT TO A CENTRAL LAB FOR DNA SEQUENCING. THIS SEQUENCING DATA IS COMBINED WITH THE PATIENT'S MEDICAL RECORDS TO PROVIDE A BETTER UNDERSTANDING OF THEIR DISEASE HISTORY. ALL PATIENT DATA STORED IN CURECLOUD IS THEN ANONYMIZED, AGGREGATED, AND WILL BE SHARED WITH RESEARCHERS AND MEDICAL PROFESSIONALS. TO DATE, MORE THAN 1,000 PATIENTS HAVE ENROLLED. IN THE FALL OF 2022, TWO PATIENT REPORTED OUTCOME (PRO) SURVEYS WERE ADMINISTERED TO CURECLOUD PARTICIPANTS IN ORDER TO TRACK PATIENT EXPERIENCES WITH MYELOMA THERAPY OVER TIME AND ACROSS TREATMENTS. THE CANCER THERAPY SATISFACTION QUESTIONNAIRE MEASURED EXPECTATIONS OF THERAPY, FEELINGS ABOUT SIDE EFFECTS, AND SATISFACTION WITH CANCER THERAPY. THE FACIT COST SURVEY MEASURED THE FINANCIAL IMPACT RELATED TO THERAPY EXPERIENCED BY MYELOMA PATIENTS. CURECLOUD WILL BE CLOSING PATIENT ENROLLMENT AT THE END OF 2023. 2713588 0 0 THE MULTIPLE MYELOMA RESEARCH CONSORTIUM (MMRC) IS A NETWORK OF LEADING MYELOMA TREATMENT CENTERS THAT CONDUCT EARLY-STAGE CLINICAL TRIALS TO EVALUATE NOVEL TREATMENT STRATEGIES FOR PATIENTS. THIS COLLABORATIVE RESEARCH MODEL HAS CONDUCTED CLOSE TO 100 PHASE I AND PHASE II CLINICAL TRIALS, ENROLLING OVER A THOUSAND PATIENTS TO DATE. THE MMRC CONTINUES TO SUCCESSFULLY FOSTER THE DEVELOPMENT OF NOVEL THERAPIES AND CHAMPION RIGOROUS RESEARCH AND CLINICAL TRIALS. CURRENT MMRC CLINICAL TRIALS THAT HAVE THE POTENTIAL TO MAKE SIGNIFICANT CONTRIBUTIONS FOR MYELOMA TREATMENT INCLUDE: MYDRUGTHE MMRF MYDRUG STUDY IS THE FIRST PLATFORM TRIAL IN MYELOMA. THE PURPOSE OF MYDRUG IS TO TEST TARGETED THERAPIES NOT YET APPROVED IN MYELOMA, IN COMBINATION WITH A STANDARD OF CARE ORAL TRIPLET THERAPY, IN FUNCTIONALLY HIGH-RISK MULTIPLE MYELOMA PATIENTS WHO DEMONSTRATE SPECIFIC GENETIC ALTERATIONS. IT IS EVALUATING TREATMENTS THAT ARE TARGETED AGAINST SPECIFIC GENOMIC ALTERATIONS WITHIN THE MYELOMA CELLS.THE SCIENTIFIC HYPOTHESIS FOR THE MYDRUG CLINICAL TRIAL CAME OUT OF OUR COMMPASS STUDY, WHICH HAS GENERATED THE LARGEST MYELOMA GENOMICS DATABASE OPENLY ACCESSIBLE TO RESEARCHERS ACROSS THE GLOBE. THE MYDRUG STUDY IS EXPECTED TO CLOSE NEW ENROLLMENTS IN 2024. ELO-IBER (RELAPSED/REFRACTORY)IBERDOMIDE (CC-220) IS A NEW AND POTENTIALLY MORE POTENT MEMBER OF A CLASS OF MEDICINES KNOWN AS IMMUNOMODULATORS (IMIDS), WHICH INCLUDES REVLIMID (LENALIDOMIDE) AND POMALYST (POMALIDOMIDE). THIS IS A PHASE 1B/2 STUDY THAT WILL HELP DETERMINE THE OPTIMAL DOSE OF IBERDOMIDE THAT CAN BE GIVEN TO PATIENTS - IN COMBINATION WITH EMPLICITI (ELOTUZUMAB) AND DEXAMETHASONE - THAT IS SAFE AND HAS THE FEWEST SIDE EFFECTS. ARCELLX (RELAPSED/REFRACTORY)CART-DDBCMA IS A CAR-T CELL THERAPY CANDIDATE THAT USES PATIENT T CELLS THAT HAVE BEEN GENETICALLY MODIFIED TO RECOGNIZE AND KILL MYELOMA CELLS. THIS NEWER VERSION OF CAR-T CELL THERAPY IS DESIGNED TO FORM A STRONGER BOND TO BCMA, A COMMON TARGET FOR MYELOMA TREATMENT, AND KILL MYELOMA CELLS MORE EFFICIENTLY THAN PREVIOUS THERAPIES. BEIGENE (RELAPSED/REFRACTORY)THIS PHASE I/II STUDY IS EVALUATING HOW SAFE AND EFFECTIVE A NEW TARGETED THERAPY (BGB-11417) IS ALONE, AND IN COMBINATION WITH KYPROLIS (CARFILZOMIB) AND DEXAMETHASONE, IN PEOPLE WITH RELAPSED OR REFRACTORY MYELOMA. BGB-11417 IS A BCL-2 INHIBITOR THAT IS POTENTIALLY EFFECTIVE IN MYELOMA PATIENTS WITH THE 11;14 CHROMOSOMAL TRANSLOCATION, WHICH ACCOUNTS FOR ABOUT 20% OF PATIENTS. SARCAR IST THIS TRIAL WILL DETERMINE THE SIDE EFFECTS AND BEST DOSE OF SARCLISA (ISATUXIMAB) WHEN GIVEN TOGETHER WITH CARFILZOMIB WITH OR WITHOUT DEXAMETHASONE AND LENALIDOMIDE IN TREATING PATIENTS WITH RELAPSED/REFRACTORY MYELOMA. IN ARM 1, IT WILL DETERMINE THE MAXIMUM TOLERATED DOSE (MTD) OF SARCLISA IN COMBINATION WITH STANDARD KYPROLIS. IN ARM 2, IT WILL STUDY THE SAFETY AND EFFICACY OF ADDING SARCLISA DOSES EVERY OTHER WEEK IN COMBINATION WITH WEEKLY KYPROLIS AND DEXAMETHASONE. AFTER COMPLETION OF STUDY TREATMENT, PATIENTS ARE FOLLOWED UP AT 30 AND 60 DAYS AND THEN EVERY 3 MONTHS FOR UP TO 3 YEARS. 19263463 0 0 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. AS A PATIENT-FOUNDED ORGANIZATION, THE MMRF STANDS TOGETHER WITH THOSE WHO ARE BATTLING MULTIPLE MYELOMA - PATIENTS, FAMILIES, PHYSICIANS, RESEARCHERS, AND INVESTORS. AT THE SAME TIME, THE MMRF STANDS APART WITH ITS INNOVATIVE APPROACH. THE MMRF GENERATES, INTERPRETS, AND ACTIVATES THE LARGEST COLLECTION OF HIGH-QUALITY DATA AND PLACES IT IN THE PUBLIC DOMAIN. THE MMRF ORCHESTRATES THE PEOPLE, PROGRAMS, AND TECHNOLOGIES NECESSARY TO SPEED THE DISCOVERY OF A CURE FOR EACH AND EVERY PATIENT. 19263463 0 0 32231243 1 1 0 0 0 0 0 0 0 0 1 0 1 0 1 1 0 1 0 0 1 1 0 0 0 0 0 1 0 1 0 0 0 0 0 0 0 0 1 0 0 0 1 0 0 0 0 1 57 0 80 1 0 0 0 0 0 0 0 0 0 0 0 0 X 17 16 1 0 1 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 1 0 AL AR CA FL GA IL KS KY MD MA MI MN MS NH NJ NY NC OR PA RI SC TN UT VA WI WV X X X ROBERT MIANI 2036520207 383 MAIN AVE 5TH FLOOR NORWALK CT 06851 X KATHY GIUSTI FOUNDER & DIRECTOR 30.00 X 736667 0 200 THOMAS CONHEENEY CHAIRMAN 2.00 X X 0 0 0 GERALD MCDOUGALL VICE CHAIRMAN 2.00 X X 0 0 0 KENNETH ANDERSON MD DIRECTOR 2.00 X 0 0 0 KAREN ANDREWS DIRECTOR 2.00 X 0 0 0 RODNEY GILMORE DIRECTOR 2.00 X 0 0 0 DAVID LUCCHINO DIRECTOR 2.00 X 0 0 0 LORI TAUBER-MARCUS DIRECTOR 2.00 X 0 0 0 HUGH MARTIN DIRECTOR 2.00 X 0 0 0 SUSAN MARVIN DIRECTOR 2.00 X 0 0 0 WILLIAM MCKIERNAN DIRECTOR 2.00 X 0 0 0 MICHAEL MORTIMER DIRECTOR 2.00 X 0 0 0 DAVID PARKINSON MD DIRECTOR 2.00 X 0 0 0 MARIE PINIZZOTTO MD DIRECTOR 2.00 X 0 0 0 ADRIAN ROSENKRANZ DIRECTOR 2.00 X 0 0 0 STEVE SHAK MD DIRECTOR 2.00 X 0 0 0 KIMBERLY WHITE DIRECTOR 2.00 X 0 0 0 MICHAEL ANDREINI PRESIDENT & CEO 40.00 X 494070 0 23408 ROBERT MIANI TREASURER & CFO 40.00 X 359867 0 24796 KAREN DIETZ SECRETARY CAO & GENERAL COUNSEL 40.00 X 271181 0 22980 ANNE QUINN YOUNG CHIEF MISSION OFFICER 40.00 X 341011 0 18849 PETER KOSA MIF MANAGING DIRECTOR 40.00 X 429658 0 33597 GEORGE MULLIGAN CHIEF SCIENTIFIC OFFICER 40.00 X 233560 0 25816 MINDY FLINN VP OF DEVELOPMENT 40.00 X 227153 0 27593 CHRISTOPHER WILLIAMS VP OF ALLIANCE MANAGEMENT 40.00 X 229055 0 28898 HEARN CHO CHIEF MEDICAL OFFICER 32.00 X 208833 0 8353 EVA M LEPISTO VP OF INFORMATICS 40.00 X 204912 0 10606 GREG RUBENSTEIN VP OF MARKETING 40.00 X 212086 0 29910 CHARLES VOLPE DIRECTOR, PR & COMMUNCIATIONS 40.00 X 173921 0 22134 TODD BROOKS SR DIRECTOR, DEVELOPMENT 40.00 X 179543 0 7996 HEATHER STEIGER DIRECTOR, DIGITAL MARKETING 40.00 X 169691 0 16330 JOANNE PUGLIA SR DIRECTOR FINANCE, CONTROLLER 40.00 X 185860 0 10136 4657068 0 311602 38 0 1 0 REDMEDED LLC 5 GREAT VALLEY PARKWAY SUITE 221 MALVERN PA 19355 CONTINUING MEDICAL EDUCATION 2556819 SEVEN BRIDGES GENOMICS INC 529 MAIN STREET SUITE 6610 CHARLESTOWN MA 02129 CONTRACT RESEARCH 1921600 TGEN 445 N FIFTH STREET PHOENIX AZ 85004 CONTRACT RESEARCH 1113529 EVENT 360 INC 55 E JACKSON BLVD SUITE 1030 CHICAGO IL 60604 EVENT MANAGEMENT 1013482 PROMETHEUS RESEARCH LLC 1 AUDUBON STREET NEW HAVEN CT 06511 CONTRACT RESEARCH 1004850 58 42022114 191034 42022114 RESEARCH & CLINICAL TRIALS 541610 2152800 2152800 2152800 679638 679638 192561 192561 93023508 93032147 -8639 -8639 -8639 OTHER INCOME 900099 6000 6000 6000 45044474 2345361 0 676999 X 4532241 4532241 57500 57500 3961065 2799433 372096 789536 5211096 3682879 489521 1038696 170487 120490 16015 33982 404960 286201 38041 80718 627329 443357 58930 125042 1050024 933603 20547 95874 116025 101769 3662 10594 60200 52803 1900 5497 8270865 7192987 34487 1043391 845594 546766 26688 272140 1475787 1331614 4201 139972 1404775 1232174 44336 128265 227995 199982 7196 20817 647770 421737 4580 221453 886269 36263 850006 951835 900195 24211 27429 160043 140379 5051 14613 CLINICAL TRIALS 6644828 6644828 TISSUE BANKING 574042 574042 38280730 32231243 1151462 4898025 X 192371 95308 0 97063 13953290 5060628 21392706 13092430 5289425 5229372 7335350 8274610 225493 896043 6732447 3768321 1816801 2964126 29648577 41091535 5648228 11719698 91977 769219 85401847 89097661 12252194 15173286 3265756 43261 12157093 9131077 492004 1060123 28167047 25407747 X 45234580 56121149 12000220 7568765 57234800 63689914 85401847 89097661 X 6763744 -538880 230250 X X 0 1 X 1 0 X 41335585 39651088 25012712 37089868 42022114 185111367 41335585 39651088 25012712 37089868 42022114 185111367 25917183 159194184 1090003 1349522 426629 100955 679638 3646747 6000 6000 188764114 16656451 0.84330 0.81880 X SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: OTHER INCOME - 2022 AMOUNT: $ 6,000. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 635825 314061 321764 387762 197403 190359 5708860 3256857 2452003 2964126 CULLINAN MICA CORP. 1178415 F ABCURO, INC. 1393212 F INDAPTA THERAPEUTICS 1638075 F FORTIS THERAPEUTIC 500000 F CYTOIMMUNE THERAPEUTICS 1999995 F TRIUMVIRA IMMUNOLOGICS 1000001 F TELO THERAPEUTICS 1010000 F LUMINARY THERAPEUTICS 1000000 F KAHR MEDICAL LTD. 2000000 F 11719698 OPERATING LEASE LIABILITY 1060123 1060123 X 43794577 -538880 855829 316949 43477628 1566846 1566846 45044474 37339463 855829 855829 36483634 1797096 1797096 38280730 PART X, LINE 2: THE MMRF RECOGNIZES THE EFFECT OF INCOME TAX POSITIONS ONLY IF THOSE POSITIONS ARE MORE LIKELY THAN NOT TO BE SUSTAINED. MANAGEMENT HAS DETERMINED THAT THE MMRF HAD NO UNCERTAIN TAX POSITIONS THAT WOULD REQUIRE FINANCIAL STATEMENT RECOGNITION OR DISCLOSURE. PART XI, LINE 4B - OTHER ADJUSTMENTS: SPECIAL EVENT EXPENSES RECLASSED TO PART IX 1,566,846. PART XII, LINE 4B - OTHER ADJUSTMENTS: SPECIAL EVENT EXPENSES RECLASSED TO PART IX 1,566,846. GRANT REFUND RECLASSED TO PART XI 230,250. 1 EUROPE (INCLUDING ICELAND & GREENLAND) 0 0 GRANTMAKING 30000 NORTH AMERICA 0 0 GRANTMAKING 27500 MIDDLE EAST AND NORTH AFRICA 0 0 INVESTMENTS 2000000 0 0 0 0 0 0 2057500 0 2057500 EUROPE (INCLUDING ICELAND & GREENLAND) FELLOW 30000 WIRE 0 NORTH AMERICA FELLOW 27500 WIRE 0 2 0 1 0 1 0 0 0 PART I, LINE 2: MMRF RECEIVES PROGRESS REPORTS ON HOW THE GRANTED FUNDS ARE USED. MMRF CONDUCTS A REVIEW PROCESS, DURING WHICH THE INVESTIGATOR'S PROGRESS REPORT IS 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 APPROPRIATE PROGRESS WAS MADE AND THE FINDINGS SUPPORT CONTINUES STUDY, HE/SHE PRESENTS THE PROGRESS AND FINDINGS TO AN APPROVAL COMMITTEE FOR A FUNDING RELEASE. PART III ACCOUNTING METHOD: SCHEDULE F, PART IV, LINE 1: THE ORGANIZATION IS REQUIRED TO FILE FORM 926 AS IT MEETS THE APPLICABLE FILING REQUIREMENT THRESHOLDS. SCHEDULE F, PART IV, LINE 3: THE ORGANIZATION IS NOT REQUIRED TO FILE FORM 5471 AS DOES NOT MEET THE APPLICABLE FILING REQUIREMENT THRESHOLDS OR OWNERSHIP AMOUNT. 1 BARBARA ANN KARMANOS CANCER HOSPITAL 4100 JOHN R STREET DETROIT MI 48201 201649466 501(C)(3) 30000 0 SITE INVESTMENT GRANT BETH ISRAEL DEACONESS MEDICAL CENTER 330 BROOKLINE AVENUE BOSTON MA 02215 042103881 501(C)(3) 632000 0 SITE INVESTMENT GRANT, IMMUNOTHERAPY CITY OF HOPE 1500 EAST DUARTE ROAD MEDICAL OFFICE BLD 3RD FLOOR DURATE CA 91010 953435919 501(C)(3) 27500 0 SITE INVESTMENT GRANT, FELLOW, IMMUNOTHERAPY DANA FARBER CANCER INSTITUTE 44 BINEY ST BOSTON MA 02115 042263040 501(C)(3) 2804526 0 SITE INVESTMENT GRANT, IMMUNOTHERAPY, PREVENTION EMORY UNIVERSITY 1365 CLIFTON RD BLDG C ATLANTA GA 30322 580566256 501(C)(3) 110700 0 SITE INVESTMENT GRANT, FELLOW, IMMUNOTHERAPY, PREVENTION H LEE MOFFITT CANCER CENTER & RESEARCH INSTITUTE 12902 MAGNOLIA DRIVE TAMPA FL 33612 593238634 501(C)(3) 30000 0 FELLOW HACKENSACK UNIVERSITY MEDICAL CENTER 360 ESSEX CENTER SUITE 302 HACKENSACK NJ 07601 221487576 501(C)(3) 27500 0 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) 363019 0 SITE INVESTMENT GRANT, IMMUNOTHERAPY INDIANA UNIVERSITY 400 E 7TH STREET POPLARS 501 BLOOMINGTON IN 47405 356001673 501(C)(3) 67500 0 FELLOW LEVINE CANCER CENTER 1021 MOREHEAD MEDICAL DRIVE CHARLOTTE NC 28204 560529945 501(C)(3) 27500 0 SITE INVESTMENT GRANT MAYO CLINIC - ROCHESTER 200 FIRST STREET SW ROCHESTER MN 55905 416011702 501(C)(3) 27500 0 SITE INVESTMENT GRANT MEMORIAL SLOAN-KETTERING CANCER CENTER 1275 YORK AVENUE NEW YORK NY 10065 131924236 501(C)(3) 62500 0 SITE INVESTMENT GRANT, FELLOW, TRANSLATIONAL CORE, PREVENTION OHIO STATE UNIVERSITY RESEARCH FOUNDATION B321 STARLING LOVING HALL 320 WEST 10TH AVENUE COLUMBUS OH 43210 316401599 501(C)(3) 62500 0 SITE INVESTMENT GRANT SARAH CANNON RESEARCH INSTITUTE LLC 3322 WEST END ROAD SUITE 900 NASHVILLE TN 37203 201557751 27500 0 SITE INVESTMENT GRANT THE UNIVERSITY OF CHICAGO 5841 S MARYLAND AVENUE MC 2115 CHICAGO IL 60637 362177139 STATE OF ILLINOIS 86996 0 SITE INVESTMENT GRANT, FELLOW UCSF MYELOMA RESEARCH PROGRAM 1855 FOLSOM STREET ROOM 423 SAN FRANCISCO CA 94103 946036493 501(C)(3) 65000 0 SITE INVESTMENT GRANT UNIVERSITY OF MICHIGAN 4310 CANCER CENTER 1500 EAST MEDICAL CENTER DRIVE ANN ARBOR MI 48109 386006309 STATE OF MICHIGAN 25000 0 SITE INVESTMENT GRANT UNIVERSITY OF TEXAS- SOUTHWESTERN MEDICAL CENTER 5323 HARRY HINES BOULEVARD DALLAS TX 75390 756002868 STATE OF TEXAS 27500 0 SITE INVESTMENT GRANT WASHINGTON UNIVERSITY IN ST LOUIS 660 E EUCLID AVENUE ST LOUIS MO 63110 430653611 501(C)(3) 27500 0 SITE INVESTMENT GRANT, IMMUNOTHERAPY 18 1 PART I, LINE 2: THE OVERALL RESEARCH BUDGET IS PRESENTED TO THE MMRF BOARD. THE BUDGET IS BROKEN DOWN INTO THREE MAIN CATEGORIES WHICH INCLUDE THE FOLLOWING GRANT TYPES: A) DATA BANK: MMRF-SPONSORED LONGITUDINAL MOLECULAR AND IMMUNE STUDIES (COMMPASS AND THE MMRF CURECLOUD). B) LEARNING NETWORK: GATEWAYS, DATA ANALYSIS INITIATIVES, TRANSLATIONAL SITE INVESTMENTS GRANTS (MMRF TRANSLATIONAL NETWORK), TRANSLATIONAL AND IMMUNE PROGRAM GRANTS, RESEARCH FELLOW GRANTS. C) CLINIC: CLINICAL- SITE INVESTMENT GRANTS, CLINICAL FUNDING AGREEMENT GRANTS, PRECISION MEDICINE GRANTS. THE BUDGET SPEND IS INITIALLY APPROVED BY THE PROGRAMMING COMMITTEE, AND THEN THE BOARD GIVES FINAL APPROVAL. 2. DURING THE YEAR, THERE ARE RESEARCH SPEND MEETINGS WITH THE CEO AND CFO TO DISCUSS PROGRESS ON MAKING THE AWARDS. ADDITIONALLY, ANY CHANGES OR REFORECASTS ARE REVIEWED. IF A CHANGE ARISES THAT IS GREATER THAN $1M, THEN IT IS PRESENTED TO THE AUDIT AND FINANCE COMMITTEE AS WELL AS THE PROGRAMMING COMMITTEE TO DISCUSS. 3. THERE ARE TWO DISTINCT TYPES OF GRANTS BEING AWARDED: 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 3 OR BETTER. ONCE THE GRANTS ARE RATED EXTERNALLY, FINAL REVIEW IS DONE BY THE MMRF RESEARCH LEADERSHIP AND RECOMMENDATIONS ARE MADE TO THE CEO AND CFO 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 NOTIFYING THEM OF THE GRANTS AWARDED AND TO PROCEED WITH MAKING THE ACCRUAL FOR THE GRANT. AFTER THE FIRST PAYMENT THE RESEARCHER SENDS IN THE REQUIRED PROGRESS REPORT TO RECEIVE REMAINING PAYMENTS. MMRF CONDUCTS A REVIEW PROCESS, DURING WHICH THE INVESTIGATOR'S PROGRESS REPORT IS 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 THAT APPROPRIATE PROGRESS WAS MADE AND THE FINDINGS SUPPORT CONTINUES STUDY, HE/SHE PRESENTS THE PROGRESS AND FINDINGS TO AN APPROVAL COMMITTEE FOR A FUNDING RELEASE. 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. THE 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 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. A CONFLICT OF INTEREST POLICY IS IN PLACE AND A COMMITTEE REVIEWS ANY ISSUES THAT MIGHT ARISE WITH ANY GRANTS. X X X X 1 0 0 0 0 0 0 1 0 KATHY GIUSTI FOUNDER & DIRECTOR 0 0 120000 0 616667 0 200 0 0 0 736867 0 0 0 MICHAEL ANDREINI PRESIDENT & CEO 325049 0 135000 0 34021 0 15050 0 8358 0 517478 0 0 0 PETER KOSA MIF MANAGING DIRECTOR 274116 0 115000 0 40542 0 12400 0 21197 0 463255 0 0 0 ROBERT MIANI TREASURER & CFO 249179 0 91600 0 19088 0 16032 0 8764 0 384663 0 0 0 ANNE QUINN YOUNG CHIEF MISSION OFFICER 251766 0 64000 0 25245 0 12235 0 6614 0 359860 0 0 0 KAREN DIETZ SECRETARY CAO & GENERAL COUNSEL 202155 0 48000 0 21026 0 12994 0 9986 0 294161 0 0 0 GEORGE MULLIGAN CHIEF SCIENTIFIC OFFICER 222208 0 0 0 11352 0 9546 0 16270 0 259376 0 0 0 CHRISTOPHER WILLIAMS VP OF ALLIANCE MANAGEMENT 196652 0 22000 0 10403 0 9480 0 19418 0 257953 0 0 0 MINDY FLINN VP OF DEVELOPMENT 191010 0 22000 0 14143 0 9400 0 18193 0 254746 0 0 0 GREG RUBENSTEIN VP OF MARKETING 176261 0 21000 0 14825 0 8807 0 21103 0 241996 0 0 0 HEARN CHO CHIEF MEDICAL OFFICER 154682 0 38000 0 16151 0 8353 0 0 0 217186 0 0 0 EVA M LEPISTO VP OF INFORMATICS 184438 0 10000 0 10474 0 9620 0 986 0 215518 0 0 0 CHARLES VOLPE DIRECTOR, PR & COMMUNCIATIONS 148543 0 14000 0 11378 0 0 0 22134 0 196055 0 0 0 JOANNE PUGLIA SR DIRECTOR FINANCE, CONTROLLER 151600 0 17600 0 16660 0 7437 0 2699 0 195996 0 0 0 TODD BROOKS SR DIRECTOR, DEVELOPMENT 155996 0 13000 0 10547 0 7176 0 820 0 187539 0 0 0 HEATHER STEIGER DIRECTOR, DIGITAL MARKETING 147199 0 13000 0 9492 0 0 0 16330 0 186021 0 0 0 PART I, LINE 4A KATHY GIUSTI, FOUNDER AND FORMER CHIEF MISSION OFFICER, RECEIVED A $250,000 SEVERANCE PAYMENT IN HER 2022 W-2. PART I, LINE 7 INDIVIDUALS INCLUDED IN SCHEDULE J, PART II RECEIVED A DISCRETIONARY BONUS DURING CALENDAR YEAR 2022, WHICH WAS INCLUDED IN COLUMN B(II) HEREIN AND IN THEIR 2022 FORM W-2, BOX 5, AS TAXABLE MEDICARE WAGES. X 24 191034 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 2022: THE MULTIPLE MYELOMA RESEARCH FOUNDATION, INC. AND ITS WHOLLY OWNED SUBSIDIARIES, THE MULTIPLE MYELOMA RESEARCH CONSORTIUM, LLC ("MMRC") AND MYELOMA INVESTMENT FUND, LLC ("MIF"), COLLECTIVELY REFERRED TO AS "THE MMRF,". IN 2022, WE CONTINUED TO ADVANCE THE KEY INITIATIVES OF OUR STRATEGIC PLAN WHICH IS ANCHORED BY THREE STRATEGIC OBJECTIVES, WITH A CENTRALIZED FOCUS ON DEI AND HEALTH EQUITY. - ACCELERATE THE DEVELOPMENT OF NOVEL THERAPIES - DRIVE OPTIMAL AND MORE PERSONALIZED TREATMENT APPROACHES - EMPOWER PATIENTS AND THE MYELOMA COMMUNITY PATIENT SERVICES AND EDUCATION THE MMRF PROVIDES PATIENTS, CAREGIVERS, AND HEALTHCARE PROVIDERS WITH THE RESOURCES THEY NEED TO MAKE INFORMED TREATMENT DECISIONS AND TO OPTIMIZE THEIR CARE. THESE INCLUDE ON-DEMAND INFORMATION AND RESOURCES ON TREATMENT OPTIONS, AND CLINICAL TRIALS TAILORED TO MEET PATIENTS EXACTLY WHERE THEY ARE ON THEIR JOURNEY. OUR PROGRAMS INCLUDE WEBINARS, PATIENT SUMMITS, BROCHURES, AND CONTINUING MEDICAL EDUCATION-ACCREDITED PROGRAMS FOR HEALTHCARE PROFESSIONALS. IN ADDITION, OUR PATIENT NAVIGATION CENTER ENABLES MYELOMA PATIENTS AND CAREGIVERS TO CONNECT WITH PATIENT NAVIGATORS FOR SUPPORT. PATIENTS CAN CONNECT WITH A PATIENT NAVIGATOR VIA PHONE, EMAIL, OR ONLINE WEB FORM. - PATIENT EDUCATION WEBINARS AND SUMMITS REACHED 16,400 PATIENTS AND CAREGIVERS IN 2022. - IN 2022, THE MMRF PATIENT NAVIGATION CENTER ANSWERED 4,200 CALLS AND ADDRESSED 3,200 CASES. ITS EXEMPLARY SERVICE HAS EARNED A 5-STAR SATISFACTION RATING FROM THE MYELOMA COMMUNITY. FORM 990, PART III, LINE 1: THE MULTIPLE MYELOMA RESEARCH FOUNDATION (MMRF) IS THE LARGEST NONPROFIT IN THE WORLD SOLELY FOCUSED ON ACCELERATING ACUREFOR EACH AND EVERY MULTIPLE MYELOMA PATIENT. WE DRIVE THE DEVELOPMENT AND DELIVERY OF NEXT-GENERATION THERAPIES, LEVERAGE DATA TO IDENTIFY OPTIMAL AND MORE PERSONALIZED TREATMENT APPROACHES, AND EMPOWER MYELOMA PATIENTS AND THE BROADER COMMUNITY WITH INFORMATION AND RESOURCES TO EXTEND THEIR LIVES. CENTRAL TO OUR MISSION IS OUR COMMITMENT TO ADVANCING HEALTH EQUITY SO THAT ALL MYELOMA PATIENTS CAN BENEFIT FROM THE SCIENTIFIC AND CLINICAL ADVANCES WE PURSUE. SINCE OUR INCEPTION, THE MMRF HAS RAISED OVER $500 MILLION FOR RESEARCH, OPENED NEARLY 100 CLINICAL TRIALS, AND HELPED BRING 15+ FDA-APPROVED THERAPIES TO MARKET, WHICH HAVE TRIPLED THE LIFE EXPECTANCY OF MYELOMA PATIENTS. FORM 990, PART VI, SECTION A, LINE 2 KATHY GIUSTI, FOUNDER & FORMER CHIEF MISSION OFFICER, AND KAREN ANDREWS, BOARD MEMBER HAVE A FAMILY RELATIONSHIP. FORM 990, PART VI, SECTION A, LINE 4 SIGNIFICANT CHANGES WERE MADE TO THE BYLAWS IN MAY 2022, WHICH INCLUDED: - DISSOLVING THE CONFLICT OF INTEREST COMMITTEE AND REALLOCATING RESPONSIBILITIES TO THE BOARD DEVELOPMENT COMMITTEE FOR ANNUAL REVIEW OF BOARD AND MANAGEMENT DISCLOSURES AND REALLOCATING RESPONSIBILITIES TO THE AUDIT AND FINANCE COMMITTEE FOR MONETARY RELATED CONFLICTS - RENAMING THE BOARD DEVELOPMENT COMMITTEE TO THE BOARD GOVERNANCE COMMITTEE TO BETTER REFLECT ROLE IN OVERALL GOVERNANCE, NOT JUST DEVELOPMENT AND INCLUDE EXPLICIT RESPONSIBILITIES FOR REVIEWING AND UPDATING BYLAWS, CODE OF ETHICS, CORPORATE RESPONSIBILITIES AND DEIB POLICIES - REELECTING A TWO YEAR TERM FOR THE BOARD CHAIR AND BOARD VICE CHAIR AND UPON EXPIRATION OF THE TWO YEAR TERM THE BOARD CHAIR, VICE CHAIR OR ANOTHER COMMITTEE CHAIR MAY ASSUME THE ROLE OF BOARD CHAIR AND A VICE CHAIR WOULD BE ELECTED BY THE BOARD OF DIRECTORS. 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 THE ORGANIZATION'S CONFLICT OF INTEREST POLICY APPLIES TO ANY DIRECTOR, OFFICER, OR MEMBER OF A STANDING OR ADVISORY COMMITTEE WITH POWERS DELEGATED BY THE MMRF BOARD OF DIRECTORS WHO MAY HAVE A DIRECT OR INDIRECT FINANCIAL INTEREST (I.E. "INTERESTED PERSON"). 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 AUDIT COMMITTEE AND MUST BE GIVEN THE OPPORTUNITY TO DISCLOSE ALL MATERIAL FACTS TO THE BOARD, MEMBERS OF THE AUDIT 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 AUDIT COMMITTEE MEETING WHILE THE DETERMINATION OF A CONFLICT OF INTEREST IS DISCUSSED AND VOTED UPON. THE REMAINING BOARD OR AUDIT 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 AUDIT 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 AUDIT 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 AUDIT 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 AUDIT 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 AUDIT 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 AUDIT COMMITTEE DETERMINES THAT SUCH PERSON HAS IN FACT FAILED TO DISCLOSE AN ACTUAL OR POSSIBLE CONFLICT OF INTEREST, THE BOARD OR AUDIT 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 IS BENCHMARKED AGAINST OTHER 501(C)(3)'S, RESEARCH ORGANIZATIONS, THIRD PARTY COMPENSATION DATABASE AND THEN REVIEWED BY THE COMPENSATION COMMITTEE. THE COMPENSATION APPROVAL IS DOCUMENTED IN THE MINUTES BY THE COMMITTEE. THIS PROCESS WAS LAST UNDERTAKEN IN 2022. 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. FORM 990 AND AUDITED FINANCIAL STATEMENTS ARE ALSO AVAILABLE AT THE ORGANIZATION'S WEBSITE: WWW.THEMMRF.ORG THE FORM 990 IS ALSO AVAILABLE ON WWW.GUIDESTAR.ORG, WWW.CHARITYNAVIGATOR.ORG, AND OTHER SIMILAR WEBSITES. FORM 990, PART VII, SECTION A, LINE 1: KATHY GIUSTI, FOUNDER AND FORMER CHIEF MISSION OFFICER, WAS NOT COMPENSATED IN THE CAPACITY OF A BOARD MEMBER, BUT IN THE CAPACITY OF A BRAND AMBASSADOR SERVICES CONSULTANT DURING 2022. FORM 990, PART IX, LINE 11G CONSULTING: PROGRAM SERVICE EXPENSES 3,897,213. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 545,913. TOTAL EXPENSES 4,443,126. MEDICAL PROFESSIONALS: PROGRAM SERVICE EXPENSES 3,026,328. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 423,922. TOTAL EXPENSES 3,450,250. RECRUITING COSTS & TEMPORARY HELP: PROGRAM SERVICE EXPENSES 269,446. MANAGEMENT AND GENERAL EXPENSES 34,487. FUNDRAISING EXPENSES 73,556. TOTAL EXPENSES 377,489. FORM 990, PART XI, LINE 9: GRANT REFUND 230,250. 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. MYELOMA INVESTMENT FUND LLC 383 MAIN AVENUE 5TH FLOOR NORWALK CT 06851 471162865 VENTURE PHILANTHROPY FUND DE 2627469 19892015 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 6154809 2589106 THE MULTIPLE MYELOMA RESEARCH FOUNDATION INC