2018-09-05T14:12:28-05:00 2017-12-31 131655065 LUTZ AND CARR CPAS LLP 551 FIFTH AVENUE SUITE 400 NEW YORK NY 10176 990 2017-01-01 582492929 LUPUS RESEARCH ALLIANCE INC LUPU 2122182840 275 MADISON AVE 10TH FLOOR NEW YORK NY 10016 DEBRA ROSE CHIEF FIN. AND ADMIN. OFFICER 2122182840 2018-09-05 1 LAUREN CRESCI P01268493 2126972299 2017 2022-09-23 18:48:47Z KENNETH M FARBER 275 MADISON AVE 10TH FLOOR NEW YORK NY 10016 36773132 0 X LUPUSRESEARCH.ORG X 1999 NY TO SUPPORT RESEARCH TO PREVENT, TREAT AND CURE LUPUS. 20 20 39 500 0 0 19101537 23693133 0 244406 -850998 1756958 19588 -9373 18270127 25685124 18737789 17597353 0 0 3323432 4543723 49000 79000 3345716 4991682 6040174 27101903 28260250 -8831776 -2575126 67639535 77005974 22480616 26522326 45158919 50483648 X THE LUPUS RESEARCH ALLIANCE LEADS THE WORLD IN TRANSFORMING THE LIVES OF PEOPLE AFFECTED WITH LUPUS BY USING THE POWER OF SCIENCE TO DRIVE NEW TREATMENTS, PREVENT DISEASE PROGRESSION, AND FIND A CURE. 0 0 10896205 9517695 RESEARCH:THE LUPUS RESEARCH ALLIANCE IS THE WORLD'S LEADER IN FUNDING LUPUS RESEARCH, SECOND ONLY TO THE NATIONAL INSTITUTES OF HEALTH. THE ORGANIZATION'S SCIENTIFIC ADVISORY BOARD IS COMPRISED OF TOP EXPERTS IN THE FIELD WHO WORK WITH STAFF TO STRATEGICALLY GUIDE AND DRIVE THE AGENDA FOR RESEARCH FUNDING. SINCE ITS INCEPTION, THE LUPUS RESEARCH ALLIANCE HAS COMMITTED OVER $182 MILLION TO FUND LUPUS RESEARCH PROJECTS. CONTINUED ON SCHEDULE OIN 2017 ALONE, OVER $9.5 MILLION WAS AWARDED IN GRANTS FOR EXTREMELY INNOVATIVE PROJECTS WITH THE POTENTIAL TO IMPROVE TREATMENT AS WELL AS UNDERSTAND THE CAUSES OF LUPUS THAT CAN LEAD TO A CURE: 1) 7 TARGET IDENTIFICATION IN LUPUS (TIL) THREE-YEAR GRANTS WITH A FOCUS OF IDENTIFYING AND HELPING FACILITATE EXPLORATION OF DRUG DEVELOPMENT WITH A TOTAL OVER $4 MILLION; 2) 9 NOVEL RESEARCH PROGRAM GRANTS THAT FOCUS PRIMARILY ON INNOVATIVE EARLY-STAGE FUNDAMENTAL RESEARCH THAT ILLUMINATE THE DISEASE MECHANISM; AWARDED $2.7 MILLION OVER THREE YEARS;3) 2 DISTINGUISHED INNOVATOR AWARDS (DIA) FOCUS ON UNCOVERING THE UNDERLYING CAUSES OF LUPUS THAT CAN LEAD TO A CURE FOR $1.5 MILLION OVER ONE TO FOUR YEARS4) JOINT LUPUS RESEARCH ALLIANCE/PFIZER'S CENTERS FOR THERAPEUTIC INNOVATION (CTI) GRANTS WERE AWARDED FOR OVER $500K OVER ONE YEAR5) THE LUPUS INSIGHT PRIZE WAS AWARDED FOR $150,000. THIS AWARD RECOGNIZES AND FURTHERS WORK BY A LEADING LUPUS RESEARCHER THAT HAS MADE A MAJOR CONTRIBUTION TO THE FIELD.6) THE LUPUS RESEARCH ALLIANCE SUPPORTED THE ACCELERATED MEDICINES PARTNERSHIP AT NATIONAL INSTITUTES OF HEALTH (NIH) AS WELL AS THE LUPUS NEPHRITIS TRIALS NETWORK AT AN ADDITIONAL $200,000 EACH COLLABORATIONS WITHIN THE LUPUS COMMUNITY THAT COMBINE RESOURCES FOR A GREATER OUTCOME.THE LUPUS RESEARCH ALLIANCE'S UNIQUE FUNDING MODEL SUPPORTS PROMISING RESEARCH EFFORTS WITH THE GOAL OF IMPROVING THE LIVES OF PEOPLE WITH LUPUS IN THE NEAR FUTURE. THROUGH A COMPETITIVE PEER-REVIEW PROCESS AND AN INNOVATIVE VENTURE-CAPITALIST APPROACH, PROJECTS BY THE LUPUS RESEARCH ALLIANCE AIM TO TRANSLATE RESULTS FROM THE RESEARCH BENCH TO THE BEDSIDE AS QUICKLY AS POSSIBLE. BECAUSE THE LUPUS RESEARCH ALLIANCE BOARD OF DIRECTORS FUNDS AND ADMINISTRATIVE AND FUNDRAISING EXPENSES, 100% OF ALL OTHER CONTRIBUTIONS GOES TO SUPPORT THE LUPUS RESEARCH ALLIANCE'S LUPUS RESEARCH PROGRAMS. 10990644 8079658 244406 SCIENTIFIC PROGRAMS:THE LUPUS RESEARCH ALLIANCE ENCOURAGES CROSS-SECTOR AND CROSS-DISCIPLINE PARTNERSHIPS TO FOSTER THE MOST INNOVATIVE AND PRODUCTIVE RESEARCH ENVIRONMENT. IN 2017, COLLABORATIVE MEETINGS WERE FUNDED BY THE LUPUS RESEARCH ALLIANCE WHERE RESEARCHERS WERE ENCOURAGED TO EXCHANGE IDEAS AND HELP THE LUPUS RESEARCH ALLIANCE TARGET NEW RESEARCH OPPORTUNITIES. CONTINUED ON SCHEDULE OTHIS INCLUDED THE: ANNUAL TWO-DAY FORUM FOR DISCOVERY WHERE FUNDED SCIENTISTS AND GUESTS SHARE THEIR PROGRESS; SCIENTIFIC ADVISORY BOARD MEETINGS WHERE OUR ADVISORS REVIEW GRANT APPLICATION SUBMISSIONS AND DISCUSS FUTURE OVERALL RESEARCH STRATEGY FOR THE ORGANIZATION; LUPUS INDUSTRY COUNCIL MEETINGS WHERE INDUSTRY FOCUSES ON SOLVING SHARED OBSTACLES TO CLINICAL TRIALS; PATIENT RESEARCH AND ADVOCACY MEETINGS THAT ENGAGE THE LUPUS COMMUNITY IN UNDERSTANDING, PARTICIPATING IN AND ADVOCATING FOR RESEARCH FUNDING; AND LUPUS CLINICAL INVESTIGATORS NETWORK (LUCIN) MEETINGS WHERE TOP RESEARCHERS DISCUSS THE DESIGN AND PROGRESS FOR LUPUS CLINICAL TRIALS. THE LUPUS RESEARCH ALLIANCE FOUNDED LUCIN TO ADVANCE CLINICAL TRIALS AND FACILITATE THE DEVELOPMENT OF MUCH NEEDED NEW LUPUS TREATMENTS. THE LUPUS RESEARCH ALLIANCE ALSO PROVIDES GRANTS TO FOSTER CLINICAL TRIAL PARTICIPATION BY TOP ACADEMIC CENTERS. IN 2017, FIVE STUDIES WERE LAUNCHED THROUGH THE LUCIN NETWORK WITH OBJECTIVES RANGING FROM EVALUATING THE BENEFITS OF USING TIMED-RELEASED PREDNISONE TO USING MRI TECHNOLOGY TO ASSESS LUPUS NEPHRITIS TO TESTING A SMARTPHONE APP THAT ALLOWS LUPUS PATIENTS TO REPORT SYMPTOMS IN REAL TIME AND PROVIDE MORE INFORMATION TO THEIR DOCTORS MORE EASILY.THE LUPUS RESEARCH ALLIANCE'S FORUM FOR DISCOVERY HAD A RECORD-BREAKING ATTENDANCE WITH 180 DEDICATED RESEARCH SCIENTISTS, PHARMACEUTICAL INDUSTRY REPRESENTATIVES, AND LUPUS RESEARCH ALLIANCE ADVOCATES FOCUSED ENTIRELY ON LUPUS RESEARCH FOR TWO DAYS AT OUR ANNUAL SCIENTIFIC CONFERENCE. SCIENTISTS DESCRIBED THEIR MOST UP-TO-DATE RESEARCH, WHILE THE RICH DISCUSSIONS SERVED AS AN INCUBATOR TO SPARK IDEAS FOR NEW RESEARCH DIRECTIONS. IN ADDITION TO THE MANY EXCITING ADVANCES SHARED, ATTENDEES RETURNED TO THEIR LABS INSPIRED BY CRITICAL INSIGHTS FROM THE FOUR DISTINGUISHED KEYNOTE SPEAKERS.ALSO IN 2017, THE LUPUS RESEARCH ALLIANCE STARTED PLANNING A HUMAN IMMUNOLOGY AND TECHNOLOGY WORKING CONFERENCE WITH APPROXIMATELY 50 ATTENDEES WITH THE GOAL TO PRIORITIZE LUPUS RESEARCH CHALLENGES AND OPPORTUNITIES THAT CAN BE ADDRESSED WITH THE NEWEST TECHNOLOGIES, AND TO IDENTIFY EMERGING TECHNOLOGIES THAT COULD ACCELERATE LUPUS RESEARCH BUT HAVE NOT YET BEEN APPLIED TO SLE. LUPUS RESEARCH ALLIANCE BOARD MEMBERS, SAB MEMBERS AND EXPERTS FROM ACROSS THE WORLD CAME TO THIS MEETING IN 2018. OVERALL, DEEP MOLECULAR AND BIOLOGICAL UNDERSTANDING OF HUMAN LUPUS, IN PARTNERSHIP WITH EMERGING TECHNOLOGIES, WILL CHANGE OUR UNDERSTANDING OF LUPUS AND DRIVE BIO/PHARMA DRUG DEVELOPMENT. 776350 PUBLIC POLICY:THE MAIN GOALS OF THE LUPUS RESEARCH ALLIANCE PUBLIC POLICY PROGRAM ARE TO: EDUCATE MEMBERS OF CONGRESS ABOUT ISSUES OF PRIORITY TO THE LUPUS COMMUNITY; TO INCREASE FEDERAL FUNDING FOR LUPUS RESEARCH BY INCREASING OVERALL NATIONAL INSTITUTES OF HEALTH (NIH) FUNDS, AND TO SECURE ADDITIONAL FUNDING FOR LUPUS RESEARCH THROUGH OTHER KEY FEDERAL AGENCIES INCLUDING THE VETERANS ADMINISTRATION AND DEPARTMENT OF DEFENSE. VOLUNTEERS ACROSS THE COUNTRY HELP AMPLIFY THESE OUTREACH EFFORTS.CONTINUED ON SCHEDULE OTHROUGH THE LUPUS RESEARCH ALLIANCE ONGOING PUBLIC POLICY PROGRAM EFFORTS, SIGNIFICANT FUNDING FOR LUPUS RESEARCH HAS BEEN OBTAINED UNDER THE DEPARTMENT OF DEFENSE (DOD) CONGRESSIONALLY DIRECTED MEDICAL RESEARCH PROGRAMS (CDMRP) OPERATED BY THE ARMY MEDICAL RESEARCH AND MATERIEL COMMAND. FIRST, THE LUPUS RESEARCH ALLIANCE WAS RESPONSIBLE FOR PERSUADING CONGRESS TO INCLUDE LUPUS IN ITS LIST OF DESIGNATED DISEASES ELIGIBLE FOR FUNDING OVER THE PAST TEN YEARS IN THE PEER REVIEWED MEDICAL PROGRAM. MOST RECENTLY, THE LUPUS RESEARCH ALLIANCE ADVOCACY SUCCEEDED IN THE ESTABLISHMENT IN 2017 OF THE LUPUS RESEARCH PROGRAM UNDER THE CDMRP. IN ITS FIRST YEAR, $5 MILLION WAS EARMARKED SPECIFICALLY FOR LUPUS AND THROUGH THE LUPUS RESEARCH ALLIANCE'S CONTINUED EFFORTS, ANOTHER $5M WAS APPROPRIATED IN FY18 BRINGS THE TOTAL TO $10 MILLION OVER THE PAST TWO YEARS. ANOTHER $5 MILLION HAS BEEN ALLOCATED FOR THE LUPUS RESEARCH PROGRAM IN THE DEFENSE HEALTH PROGRAM IN THE FY 2019 DEFENSE APPROPRIATIONS BILLIN 2017, THE LUPUS PATIENT-FOCUSED DRUG DEVELOPMENT (PFDD) INITIATIVE TO BRING THE VOICE OF THE PATIENT TO DRUG DEVELOPMENT WAS LAUNCHED. THIS COLLABORATIVE EFFORT WITH THE LUPUS AND ALLIED DISEASES ASSOCIATION (LADA) AND LUPUS FOUNDATION OF AMERICA (LFA) WAS DESIGNED TO PROVIDE THE FOOD AND DRUG ADMINISTRATION (FDA) WITH PERSPECTIVES FROM PEOPLE WITH LUPUS, ADVOCATES AND CAREGIVERS TO HELP INFORM THE FDA'S DECISIONS AND OVERSIGHT DURING THE DRUG DEVELOPMENT AND REVIEW PROCESSES. A REPORT WAS SENT TO THE FDA IN SPRING 2018 THAT INCLUDES THE RESULTS FROM OVER 2,000 SURVEYS OF PEOPLE WITH LUPUS AS WELL AS INPUT FROM THE IN-PERSON MEETING HELD IN SEPTEMBER 2017 WITH OVER 300 ATTENDEES. ONGOING ADVOCACY FOCUSES ON ENSURING LEGISLATION THAT SECURES THE FEDERAL FUNDING SUPPORT NECESSARY TO AFFORD INVESTIGATORS THE RESOURCES TO FOLLOW THROUGH WITH RESEARCH DISCOVERIES THAT WILL IMPROVE TREATMENT OF LUPUS. 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OFFICER 40.00 X 164693 0 34605 ANDREA O'NEILL EXECUTIVE DIRECTOR 40.00 X 188028 0 39350 ALBERT ROY EXECUTIVE DIRECTOR, LUCIN 40.00 X 203797 0 47074 DOREY NEILINGER SENIOR DIRECTOR OF PHILANTROPY 40.00 X 154262 0 32676 ROBERT D HINNEN SENIOR DIRECTOR OF PHILANT 40.00 X 167440 0 16599 DIANE GROSS NATIONAL DIRECTOR OF ADVOCACY & PROGRAMS 40.00 X 115589 0 30993 MARGY MEISLIN EDITORIAL & PR DIRECTOR 40.00 X 119731 0 35974 DENISE PRIOR DIRECTOR OF COMMUNICATIONS 40.00 X 119339 0 30385 1693401 0 396323 10 0 1 0 AMPEL BIOSOLUTIONS LLC 250 WEST MAIN STREET SUITE 300 CHARLOTTESVILLE VA 22902 SCIENTIFIC CONSULTANT 386800 KIM KAISER & ASSOCIATES LLC 151 CENTRE AVE 1A NEW ROCHELLE NY 10805 PHARMA RELATIONS CONSULTANT 244960 NOW IT MATTERS LLC 323 LINDLEY PLACE BOZEMAN MT 59715 DATABASE MERGER CONSULTANT 214065 SCHANER & LUBITZ PLLC 4550 AVENUE SUITE 1100 N BETHESDA MD 20814 CLINICAL TRIAL ATTORNEYS 153163 4 5002309 18690824 393703 23693133 LUCIN CONSULTING REVENUE 900099 244406 244406 244406 1299075 1299075 8553 25483 -16930 -16930 -16930 9231350 1758509 8734490 1797486 496860 -38977 457883 457883 530523 5002309 530523 0 230 26 204 204 SUBLET INCOME 532000 7353 7353 7353 25685124 244406 0 1747585 16237353 16237353 1360000 1360000 1266738 608815 258324 399599 2424116 764792 657459 1001865 184244 61131 46573 76540 424614 143836 109759 171019 244011 89585 60843 93583 75000 75000 151376 147073 4303 68600 68600 127138 127138 79000 79000 119713 119713 1341728 853546 209934 278248 102226 26996 41290 33940 283913 150265 80588 53060 1008507 385515 245455 377537 539779 349253 29892 160634 658440 587265 54368 16807 142619 52360 35562 54697 62202 36443 10149 15610 CLINICAL STUDIES 425925 425925 PRINTING & PUBLICATIONS 279701 64798 82496 132407 WALKATHON PROMOTIONAL E 239903 239903 BRANDING & DESIGN 152307 46008 68392 37907 261097 70102 67635 123360 28260250 22663199 2251335 3345716 X 1175462 3730691 3030324 1058194 7780945 11077526 255040 197627 948065 266201 2396857 681864 50404753 58140564 1892101 1510163 704053 609345 67639535 77005974 485285 503931 21604469 25308455 390862 709940 22480616 26522326 X 41267063 41101395 3891856 9382253 45158919 50483648 67639535 77005974 X -2575126 7894056 5799 X 0 1 X 1 0 X 8223868 12504683 15274909 19101537 23693133 78798130 8223868 12504683 15274909 19101537 23693133 78798130 32518562 46279568 1942593 1763120 1817934 1227336 1314981 8065964 389 675 118 -440 204 946 86865040 244406 0.53280 0.55570 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 776350 776350 27483900 28260250 1000000 250000 0 0 835249 909121 1000000 1000000 3744370 5616555 123897 152897 541256 776350 1594400 208812 227280 250000 250000 936092 1404138 45863827 8478913 2600343 51742397 44173045 4257605 2566823 45863827 48100254 -1498278 2428931 44173045 46953037 3340405 2193188 48100254 31218383 10000000 8816260 3081606 46953037 1.00000 0 0 395742 58277 337465 552323 207924 344399 681864 DEFERRED RENT 709940 709940 33459467 7894056 7894056 25565411 119713 119713 25685124 28134738 0 28134738 119713 5799 125512 28260250 PART V, LINE 4: BOARD DESIGNATED (QUASI) ENDOWMENT FUND INCOME TO BE USED FOR RESEARCH PROGRAM GRANTS. PRINCIPAL TO REMAIN INTACT UNLESS HIGH PRIORITY LUPUS RESEARCH PROJECTS NEED TO BE FUNDED THAT COULD NOT BE FUNDED OTHERWISE. PART XII, LINE 4B - OTHER ADJUSTMENTS: RETURN OF GRANTS & ADJUSTMENTS 5,799. PART XI, LINE 4B AND PART XII, LINE 4B UNUSED PORTIONS OF GRANTS RETURNED TO LRA THAT WERE PAID IN PREVIOUS YEARS IN THE AMOUNT OF $5,799. THESE AMOUNTS ARE RECONCILING ITEMS BETWEEN THE REVENUE AND EXPENSES FROM THE AUDITED FINANCIAL STATEMENTS AND THOSE REPORTED ON FORM 990. 1 NORTH AMERICA 0 0 GRANTS TO RECIPIENTS 1360000 0 0 0 0 0 0 1360000 0 1360000 NORTH AMERICA LUPUS RESEARCH 120000 CHECK BOOK NORTH AMERICA LUPUS RESEARCH 160000 CHECK BOOK NORTH AMERICA LUPUS RESEARCH 160000 CHECK BOOK NORTH AMERICA LUPUS RESEARCH 160000 CHECK BOOK NORTH AMERICA LUPUS RESEARCH 120000 CHECK BOOK NORTH AMERICA LUPUS RESEARCH 160000 CHECK BOOK NORTH AMERICA LUPUS RESEARCH 120000 CHECK BOOK NORTH AMERICA LUPUS RESEARCH 120000 CHECK BOOK NORTH AMERICA LUPUS RESEARCH 240000 CHECK BOOK 4 5 0 0 0 0 0 0 PART I, LINE 2: BEFORE A GRANT IS AWARDED, THE SPONSORING INSTITUTION (SI) MUST AGREE TO THE TERMS AND CONDITIONS OUTLINED IN THE LUPUS RESEARCH ALLIANCE'S POLICY STATEMENT FOR RESEARCH GRANTS THAT INCLUDE: - CONFIRMATION BY THE PRINCIPAL INVESTIGATOR (PI) AND THE SI THAT FUNDS WILL ONLY BE USED AS DESCRIBED IN THE APPLICATION SUBMITTED AND APPROVED FOR FUNDING. - AGREE THAT PI AND SI ARE BOTH RESPONSIBLE FOR INSURING THAT ALL RESEARCH ACTIVITIES ARE CONDUCTED IN A SAFE, RESPONSIBLE AND ETHICAL MANNER. THEY MUST KEEP UPDATED APPROVAL FROM THE SI'S INSTITUTIONAL REVIEW BOARD AND ANIMAL CARE AND USE COMMITTEE THOUGHT OUT THE PROJECT PERIOD. - AGREE TO GET APPROVAL FROM THE LUPUS RESEARCH ALLIANCE IF THERE NEEDS TO BE A SIGNIFICANT CHANGE TO THE BUDGET AS SUBMITTED. - AGREE TO GET APPROVAL FROM THE LUPUS RESEARCH ALLIANCE IF ADDITIONAL TIME IS NEEDED TO COMPLETE THE PROJECT WORK. - AGREE TO SUBMIT ALL DELIVERABLES AND REPORTS AS SCHEDULED: (A) ANNUAL PROGRESS REPORTS AND (B) ANNUAL BUDGET RECONCILIATION IS REQUIRED. - TRAVEL FUNDS PROVIDED AS PART OF THE PROJECT MUST BE USED TO ATTEND THE LUPUS RESEARCH ALLIANCE'S ANNUAL MEETING FORUM FOR DISCOVERY. - CONFIRMATION THAT THERE IS NO OTHER ACTIVE OF PENDING SUPPORT FOR THE SPECIFIC PROJECT THAT IS THE SUBJECT OF THE GRANT. THE PI AND A REPRESENTATIVE FROM THE SI MUST SUBMIT THE FOLLOWING: A SIGNED LETTER OF ACCEPTANCE CONFIRMING THE FOLLOWING: A. PI'S WILLINGNESS TO ADHERE TO THE TERMS OF THE BUDGET AS OUTLINED IN THE FUNDING LETTER. B. PI'S WILLINGNESS TO COMPLY WITH ALL OF THE CONDITIONS OUTLINED IN THE POLICY STATEMENT FOR RESEARCH GRANTS AND PATENT AND INTELLECTUAL PROPERTY POLICY. C. THERE IS NO OVERLAPPING SOURCE OF SUPPORT FOR THE SPECIFIC PROJECT THAT IS THE SUBJECT OF THIS GRANT. OTHER FUNDING THAT MIGHT BE CONSTRUED AS OVERLAPPING, MUST BE EXPLAINED IN DETAIL. D. THE FOLLOWING STATEMENT SHOULD APPEAR AT THE CONCLUSION OF THE LETTER OF ACCEPTANCE, "I AGREE TO ACCEPT RESPONSIBILITY FOR THE SCIENTIFIC AND TECHNICAL CONDUCT OF THE RESEARCH PROJECT AND FOR THE PROVISION OF ALL PROGRESS REPORTS REQUIRED FROM INVESTIGATORS FUNDED BY A GRANT FROM THE LUPUS RESEARCH ALLIANCE." - IF AN EXTENSION IS AWARDED ADDITIONAL INTERIM PROGRESS REPORTS AND BUDGET RECONCILIATIONS ARE REQUIRED TO BE SUBMITTED. - AT THE END OF THE GRANT A FINAL PROGRESS REPORT AND BUDGET RECONCILIATION IS REQUIRED TO BE SUBMITTED, UNSPENT AMOUNTS ARE TO BE RETURNED TO THE LUPUS RESEARCH ALLIANCE. ALL SIS RECEIVE A PAYMENT AND DELIVERABLE SCHEDULE AND THE PROJECT IS MONITORED BY: - PERIODIC PROGRESS REPORTS - PERIODIC BUDGET RECONCILIATIONS - ALL PUBLICATIONS RELATED TO THE GRANT ARE TO BE SUBMITTED TO THE LUPUS RESEARCH ALLIANCE X X X X X 1 DS CONSULTING GROUP 845 THIRD AVENUE 6TH FLOOR NEW YORK NY 10022 SPECIAL EVENT CONSULTANT 1 3357182 79000 3357182 3357182 79000 3357182 AL AK AZ AR CA CO CT DE FL GA HI ID IL IN IA KS KY LA ME MD MA MI MN MS MO MT NE NV NH NJ NM NY NC ND OH OK OR PA RI SC SD TN TX VT VA WA WV WI WY GALA CELEBRATION 3453225 2962455 490770 49125 192752 17500 231393 WALK-A-THONS 1651424 1611671 39753 39753 2 428183 428183 5532832 5002309 530523 49125 192752 17500 271146 530523 0 SCHEDULE G, PART I, LINE 2B, COLUMN (V) DS CONSULTING PLANNED AND MANAGED ALR'S GALA EVENT. CONTRACT AMOUNT FOR THE PERIOD COVERING 1/1/17 - 12/31/17 WAS $79,000 PLUS REIMBURSABLE EXPENSES. 1 BRIGHAM AND WOMEN'S HOSPITAL INC 4 BLACK FAN CIRCLE BOSTON MA 02115 042312909 501(C)(3) 1222489 BOOK LUPUS RESEARCH CHILDREN'S HOSPITAL BOSTON 300 LONGWOOD AVENUE BOSTON MA 02115 042774441 501(C)(3) 1073047 BOOK LUPUS RESEARCH PENNSYLVANIA STATE UNIVERSITYCOLLEGE OF MEDICINE ONE OLD MAIN UNIVERSITY PARK PA 16802 246000376 501(C)(3) 951627 BOOK LUPUS RESEARCH UNIVERSITY OF ALABAMA 1530 3RD AVENUE S BIRMINGHAM AL 35294 636005396 501(C)(3) 897449 BOOK LUPUS RESEARCH UNIVERSITY OF MICHIGAN 503 THOMPSON STREET ANN ARBOR MI 48109 386006309 501(C)(3) 727449 BOOK LUPUS RESEARCH UNIVERSITY OF MASSACHUSETTS MEDICAL SCHOOL 55 LAKE AVE WORCESTER MA 01655 043167325 MA STATE GOVERNMENT 683529 BOOK LUPUS RESEARCH MEDICAL UNIVERSITY OF SOUTH CAROLINA 179 ASHLEY AVENUE CHARLESTON SC 29425 576028985 SC STATE GOVERNMENT 679732 BOOK LUPUS RESEARCH TEMPLE UNIVERSITY 1801 N BROAD STREET PHILADELPHIA PA 19122 231365971 501(C)(3) 674415 BOOK LUPUS RESEARCH UNIVERSITY OF SOUTHERN CALIFORNIA ZONAL AVEHMR 705 LOS ANGELES CA 90089 951642394 501(C)(3) 620403 BOOK LUPUS RESEARCH UNIVERSITY OF HOUSTON 4800 CALHOUN ROAD CALHOUN ROAD TX 77004 746001399 501(C)(3) 542068 BOOK LUPUS RESEARCH HOSPITAL FOR SPECIAL SURGERY 535 EAST 70TH STREET NEW YORK NY 10021 131624135 501(C)(3) 443725 BOOK LUPUS RESEARCH UNIVERSITY OF FLORIDA 1149 SOUTH NEWELL DRIVE GAINESVILLE FL 32611 596002052 FLORIDA STATE GOV 426469 BOOK LUPUS RESEARCH THE FEINSTEIN INSTITUTE FOR MEDICAL RESEARCH 350 COMMUNITY DRIVE MANHASSET NY 11030 112673595 501(C)(3) 426005 BOOK LUPUS RESEARCH THE REGENTS OF THE UNIVERSITY OF CALIFORNIA SAN DIEGO 9500 GILMAN DRIVE MC0934 LA JOLLA CA 92093 956006144 501(C)(3) 389376 BOOK LUPUS RESEARCH UNIVERSITY OF CALIFORNIA SAN FRANCISCO 2200 UNIVERSITY HALL BERKELEY CA 94720 946036493 501(C)(3) 354059 BOOK LUPUS RESEARCH UNIVERSITY OF NORTH TEXAS HEALTH SCIENCE CENTER AT FORT WORTH 3500 CAMP BOWIE BLVD FORT WORTH TX 76107 710986983 501(C)(3) 283725 BOOK LUPUS RESEARCH NEW YORK UNIVERSITY SCHOOL OF MEDICINE 550 FIRST AVENUE NEW YORK NY 10016 135562308 501(C)(3) 217188 BOOK LUPUS RESEARCH TRUSTEES OF THE UNIVERSITY OF PENNSYLVANIA 3451 WALNUT STREET PHILADELPHIA PA 19104 231352685 501(C)(3) 205018 BOOK LUPUS RESEARCH YALE UNIVERSITY PO BOX 208239 NEW HAVEN CT 06520 060646973 501(C)(3) 204871 BOOK LUPUS RESEARCH COLUMBIA UNIVERSITY MEDICAL CENTER 154 HAVEN AVE 2ND FL NEW YORK NY 10032 133598093 501(C)(3) 200000 BOOK LUPUS RESEARCH FOUNDATION FOR THE NATIONAL INSTITUTE FOR HEALTH INC 9650 ROCKVILLE PIKE BETHESDA MD 20814 521986675 501(C)(3) 200000 BOOK LUPUS RESEARCH NORTHWESTERN UNIVERSITY 633 CLARK STREET EVANSTON IL 60208 362167818 501(C)(3) 200000 BOOK LUPUS RESEARCH UNIVERSITY OF NORTH CAROLINA 910 RALEIGH ROAD CHAPEL HILL NC 27174 566001393 501(C)(3) 196985 BOOK LUPUS RESEARCH ALBERT EINSTEIN COLLEGE OF MEDICINE 1300 MORRIS PARK AVE BRONX NY 10461 472209056 501(C)(3) 160000 BOOK LUPUS RESEARCH MASSACHUSETTS GENERAL HOSPITAL 55 FRUIT STREET BOSTON MA 02114 042697983 501(C)(3) 160000 BOOK LUPUS RESEARCH MAYO CLINIC 200 FIRST STREET SW ROCHESTER MN 55905 416011702 501(C)(3) 160000 BOOK LUPUS RESEARCH OKLAHOMA MEDICAL RESEARCH FOUNDATION 825 NE 13TH STREET OKLAHOMA CITY OK 73104 730580274 501(C)(3) 160000 BOOK LUPUS RESEARCH REGENTS OF THE UNIVERSITY OF CALIFORNIA IRVINE 5171 CALIFORNIA AVENUE STE 150 IRVINE CA 92697 952226406 501(C)(3) 160000 BOOK LUPUS RESEARCH UNIVERSITY OF MIAMI 1320 S DIXIE HIGHWAY GABLES ONE TOWER 650 CORAL GABLES FL 33146 590624458 501(C)(3) 160000 BOOK LUPUS RESEARCH UNIVERSITY OF ROCHESTER 518 HYLAN BUILDING ROCHESTER NY 14627 160743209 501(C)(3) 160000 BOOK LUPUS RESEARCH WALLACE RHEUMATIC STUDIES CENTER LLC 8737 BENVERLY BLVD STE 301 W HOLLYWOOD CA 90048 455434561 501(C)(3) 160000 BOOK LUPUS RESEARCH THE OHIO STATE UNIVERSITY 333 WEST TENTH AVENUE COLUMBUS OH 43210 316025986 SEC 115 UNIT OF OHIO 160000 BOOK LUPUS RESEARCH UNIVERSITY OF MARYLAND BALTIMORE 620 W LEXINGON STREET 4TH FL BALTIMORE MD 21201 521830242 SECTION 115 - MD STA 160000 BOOK LUPUS RESEARCH UT SOUTHWESTERN MEDICAL CENTER 5323 HARRY HINES BOULEVARD DALLAS TX 75390 746000203 TX STATE GOVERNMENT 160000 BOOK LUPUS RESEARCH WAKE FOREST UNIVERSITY HEALTH SCIENCES MEDICAL CENTER BLVD WINSTONSALEM NC 27157 223849199 501(C)(3) 160000 BOOK LUPUS RESEARCH WASHINGTON UNIVERSITY SCHOOL OF MEDICINE MISSOURI ONE BROOKINGS DRIVE ST LOUIS MO 63130 430653611 501(C)(3) 160000 BOOK LUPUS RESEARCH WEILL MEDICAL COLLEGE OF CORNELL UNIVERSITY 1300 YORK AVENUE NEW YORK NY 10065 131623978 501(C)(3) 150000 BOOK LUPUS RESEARCH BENAROYA RESEARCH INSTITUTE AT VIRGINIA MASON 1201 NINTH AVE SEATTLE WA 98101 910653422 501(C)(3) 134059 BOOK LUPUS RESEARCH UNIVERSITY OF WASHINGTON 1959 NE PACIFIC STREET SEATTLE WA 98195 916001537 501(C)(3) 133717 BOOK LUPUS RESEARCH BETH ISRAEL DEACONESS MEDICAL CENTER BROOKLINE AVENUE BOSTON MA 02215 042103881 501(C)(3) 120000 BOOK LUPUS RESEARCH EMORY UNIVERSITY 1762 CLIFTON RD NE ATLANTA GA 30322 580566256 501(C)(3) 120000 BOOK LUPUS RESEARCH NORTHWELL HEALTH - DIVISION OF RHEUMATOLOGY 972 BRUSH HOLLOW RD 5TH FL WESTBURY NY 11590 112673595 501(C)(3) 120000 BOOK LUPUS RESEARCH RUSH UNIVERSITY MEDICAL CENTER 1653 WEST CONGRESS PARKWAY CHICAGO IL 60612 362174823 501(C)(3) 120000 BOOK LUPUS RESEARCH STANFORD UNIVERSITY 269 CAMPUS DRIVE CCSR BUILDING ROOM 2215A STANFORD CA 94305 941156365 501(C)(3) 120000 BOOK LUPUS RESEARCH THE REGENTS OF THE UNIVERSITY OF CALIFORNIA LOS ANGELES 10920 WILSHIRE BLVD STE 620 LOS ANGELES CA 90024 956006143 501(C)(3) 120000 BOOK LUPUS RESEARCH THE RESEARCH FOUNDATION OF SUNY 35 STATE STREET ALBANY NY 12201 141368361 501(C)(3) 120000 BOOK LUPUS RESEARCH THE UNIVERSITY OF CHICAGO 5801 SOUTH ELLIS AVENUE STE 501 CHICAGO IL 60637 362177139 501(C)(3) 120000 BOOK LUPUS RESEARCH UNIVERSITY OF COLORADO ANSCHUTZ MEDICAL CAMPUS 3100 MARINE ST 6TH FL BOULDER CO 80309 846000555 501(C)(3) 120000 BOOK LUPUS RESEARCH UNIVERSITY OF MISSISSIPPI MEDICAL CENTER 2500 NORTH STATE STREET JACKSON MS 39216 646008520 501(C)(3) 120000 BOOK LUPUS RESEARCH UNIVERSITY OF PITTSBURGH 123 UNIVERSITY PLACE PITTSBURGH PA 15213 250965591 501(C)(3) 120000 BOOK LUPUS RESEARCH VANDERBILT UNIVERSITY MEDICAL CENTER 1211 MEDICAL CENTER DRIVE NASHVILLE TN 37232 352528741 501(C)(3) 120000 BOOK LUPUS RESEARCH THE METROHEALTH SYSTEM 2500 METROHEALTH DRIVE CLEVELAND OH 44109 346004382 SECTION 115 - OH STA 120000 BOOK LUPUS RESEARCH METHODIST HEALTHCARE FOUNDATION 1211 UNION AVE STE 450 MEMPHIS TN 38104 237320638 501(C)(3) 120000 BOOK LUPUS RESEARCH ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI ONE GUSTAVE L LEVY PLACE NEW YORK NY 10029 136171197 501(C)(3) 50000 BOOK LUPUS RESEARCH DARTMOUTH MEDICAL SCHOOL 1 ROPE FERRY ROAD HANOVER NH 03755 020222111 501(C)(3) 28594 BOOK LUPUS RESEARCH RESTOR & VISITORS OF THE UNIVERSITY OF VIRGINIA PO BOX 400127 CHARLOTTESVILLE VA 22904 546001796 501(C)(3) 28594 BOOK LUPUS RESEARCH AMPEL BIOSOLUTIONS LLC 1001 RESEARCH PARK BLVD SUITE 301 CHARLOTTESVILLE VA 22901 463230076 25310 BOOK LUPUS RESEARCH FRED HUTCHINSON CANCER RESEARCH CENTER OFFICE OF SPONSORED RESEARCH 1100 FAIRVIEW AVENUE N SEATTLE WA 98109 237156071 501(C)(3) 14059 BOOK LUPUS RESEARCH PARTNERS HEALTHCARE SYSTEM INC 101 HUNTINGTON AVENUE BOSTON MA 02199 433230035 501(C)(3) 14059 BOOK LUPUS RESEARCH SEATTLE CHILDREN'S RESEARCH INSTITUTE 1900 NINTH AVENUE SEATTLE WA 98101 910564748 501(C)(3) 14059 BOOK LUPUS RESEARCH THE CHILDREN'S HOSPITAL OF PHILADELPHIA 3535 MARKET STREET PHILADELPHIA PA 19104 231352166 501(C)(3) 14059 BOOK LUPUS RESEARCH THE METHODIST HOSPITAL RESEARCH INSTITUTE 6565 FANNIN MGJ4-024 HOUSTON TX 77030 870721923 501(C)(3) 14059 BOOK LUPUS RESEARCH UNIVERSITY OF WASHINGTON 12455 COLLECTIONS DRIVE CHICAGO IL 11042 910564748 501(C)(3) 14059 BOOK LUPUS RESEARCH UNIVERSITY OF VIRGINIA PO BOX 400126 CHARLOTTESVILLE VA 22904 546001796 501(C)(3) 13096 BOOK LUPUS RESEARCH THE CENTER FOR INFORMATION & STUDY ON CLINICAL RESARCH PARTICPATION 56 COMMERCIAL WHARF EAST BOSTON MA 02110 200588190 501(C)(3) 10000 BOOK LUPUS RESEARCH 65 1 PART I, LINE 2: BEFORE A GRANT IS AWARDED, THE INSTITUTION MUST AGREE TO THE TERMS AND CONDITIONS OUTLINED IN THE LRA'S POLICY STATEMENT FOR RESEARCH GRANTS THAT INCLUDE: - CONFIRMATION BY THE PRINCIPAL INVESTIGATOR (PI) AND THE INSTITUTION THAT FUNDS WILL ONLY BE USED AS DESCRIBED IN THE APPLICATION SUBMITTED AND APPROVED FOR FUNDING. - AGREE THAT PI AND SPONSORING INSTITUTION ARE BOTH RESPONSIBLE FOR INSURING THAT ALL RESEARCH ACTIVITIES ARE CONDUCTED IN A SAFE, RESPONSIBLE AND ETHICAL MANNER. - AGREE TO GET APPROVAL FROM THE LRA IF THERE NEEDS TO BE A SIGNIFICANT CHANGE TO THE BUDGET AS SUBMITTED. - AGREE TO GET APPROVAL FROM THE LRA IF ADDITIONAL TIME IS NEEDED TO COMPLETE THE PROJECT WORK. - AGREE TO SUBMIT ALL DELIVERABLES AND REPORTS AS SCHEDULED: (A) ANNUAL PROGRESS REPORTS AND (B) ANNUAL BUDGET RECONCILIATION IS REQUIRED. THE PI AND A REPRESENTATIVE FROM THE INSTITUTION MUST SUBMIT THE FOLLOWING: A SIGNED LETTER OF ACCEPTANCE CONFIRMING THE FOLLOWING: A. PI'S WILLINGNESS TO ADHERE TO THE TERMS OF THE BUDGET AS OUTLINED IN THE FUNDING LETTER. B. PI'S WILLINGNESS TO COMPLY WITH ALL OF THE CONDITIONS OUTLINED IN THE POLICY STATEMENT FOR RESEARCH GRANTS AND PATENT AND INTELLECTUAL PROPERTY POLICY. C. THERE IS NO OVERLAPPING SOURCE OF SUPPORT FOR THE SPECIFIC PROJECT THAT IS THE SUBJECT OF THIS GRANT. OTHER FUNDING THAT MIGHT BE CONSTRUED AS OVERLAPPING, MUST BE EXPLAINED IN DETAIL. D. THE FOLLOWING STATEMENT SHOULD APPEAR AT THE CONCLUSION OF THE LETTER OF ACCEPTANCE, "I AGREE TO ACCEPT RESPONSIBILITY FOR THE SCIENTIFIC AND TECHNICAL CONDUCT OF THE RESEARCH PROJECT AND FOR THE PROVISION OF ALL PROGRESS REPORTS REQUIRED FROM INVESTIGATORS FUNDED BY A GRANT FROM THE LUPUS RESEARCH ALLIANCE." - IF AN EXTENSION IS AWARDED ADDITIONAL INTERIM PROGRESS REPORTS AND BUDGET RECONCILIATIONS ARE REQUIRED TO BE SUBMITTED. - AT THE END OF THE GRANT A FINAL PROGRESS REPORT AND BUDGET RECONCILIATION IS REQUIRED TO BE SUBMITTED, UNSPENT AMOUNTS ARE TO BE RETURNED TO THE LRA. ALL INSTITUTIONS RECEIVE A PAYMENT AND DELIVERABLE SCHEDULE AND THE PROJECT IS MONITORED BY: - PERIODIC PROGRESS REPORTS - PERIODIC BUDGET RECONCILIATIONS - ALL PUBLICATIONS RELATED TO THE GRANT ARE TO BE SUBMITTED TO THE LRA X X X X X 0 0 0 0 0 0 0 0 0 KENNETH M FARBER CO-CEO AND CO-PRESIDENT 309643 0 40000 0 4012 0 21600 0 40125 0 415380 0 0 0 MARGARET P DOWD CO-CEO AND CO-PRESIDENT 104727 0 0 0 2140 0 58063 0 8879 0 173809 0 0 0 DEBRA ROSE CHIEF FIN. AND ADMIN. OFFICER 157852 0 5000 0 1841 0 15030 0 19575 0 199298 0 0 0 ANDREA O'NEILL EXECUTIVE DIRECTOR 177016 0 10000 0 1012 0 20908 0 18442 0 227378 0 0 0 ALBERT ROY EXECUTIVE DIRECTOR, LUCIN 192826 0 10000 0 971 0 13510 0 33564 0 250871 0 0 0 DOREY NEILINGER SENIOR DIRECTOR OF PHILANTROPY 150285 0 0 0 3977 0 16696 0 15980 0 186938 0 0 0 ROBERT D HINNEN SENIOR DIRECTOR OF PHILANT 105920 0 0 0 61520 0 3750 0 12849 0 184039 0 0 0 MARGY MEISLIN EDITORIAL & PR DIRECTOR 117813 0 0 0 1918 0 12500 0 23474 0 155705 0 0 0 X 14 393703 AVG STOCK VALUE 0 1 1 FORM 990, PART VI, SECTION A, LINE 2 NEIL J. BURMEISTER (DIRECTOR), IRA AKSELRAD (DIRECTOR), AND ROBERT WOOD JOHNSON, IV, (PAST CHAIRMAN OF THE BOARD), HAVE A BUSINESS RELATIONSHIP. FORM 990, PART VI, SECTION B, LINE 11B AFTER PREPARATION BY OF FORM 990 BY LRA'S AUDITOR, LUTZ AND CARR, THE 990 IS REVIEWED BY THE LRA'S SENIOR OFFICERS, THE CHIEF FINANCE OFFICER AND THE PRESIDENT. THE FINANCE AND AUDIT COMMITTEE OF THE BOARD THEN MEETS TO REVIEW THE 990 BEFORE FILING AND APPROVES FOR FILING WITH ANY NOTED CHANGES. A DRAFT OF THE 990 IS THEN SENT OUT TO THE FULL BOARD FOR COMMENT PRIOR TO FILING WITH THE IRS. THE FINAL FORM 990 IS PRESENTED TO THE FULL BOARD AT THE SEPTEMBER MEETING. FORM 990, PART VI, SECTION B, LINE 12C THE GOVERNANCE COMMITTEE OF THE BOARD IS RESPONSIBLE FOR MONITORING CONFLICTS OF INTEREST. AN ANNUAL CONFLICT OF INTEREST DISCLOSURE FORM IS REQUIRED TO BE FILLED OUT EACH YEAR BY BOARD MEMBERS, OFFICERS AND KEY EMPLOYEES. FORM 990, PART VI, SECTION B, LINE 15 THE COMPENSATION COMMITTEE OF THE BOARD OF DIRECTORS ASSISTED THE BOARD IN FULFILLING ITS OVERSIGHT RESPONSIBILITIES RELATING TO THE COMPENSATION AND BENEFITS OF THE PRESIDENT AND OTHER EXECUTIVE OFFICERS; AND PROVIDED RECOMMENDATIONS REGARDING MANAGEMENT SUCCESSORS. ANNUALLY THE COMMITTEE REVIEWS AND RECOMMENDS TO THE BOARD THE SALARY FOR THE PRESIDENT AND OTHER OFFICERS/KEY EMPLOYEES. IN 2017, THE COMMITTEE REVIEWED AND APPROVED BASE SALARIES, ANNUAL MERIT ADJUSTMENTS, AND BONUSES FOR ALL STAFF. FORM 990, PART VI, SECTION C, LINE 19 THE ORGANIZATION'S GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY AND FINANCIAL STATEMENTS ARE AVAILABLE UPON REQUEST AND ON GUIDESTAR.ORG FORM 990, PART XI, LINE 9: RETURN OF GRANT FUNDS 5,799. FORM 990, PART V, QUESTION 2A THE LRA CONTRACTS WITH TRINET AMBROSE, A PROFESSIONAL EMPLOYER ORGANIZATION (PEO), TO PROVIDE PAYROLL AND BENEFITS AS A CO-EMPLOYER WITH THE LRA. LRA PAYROLL AND BENEFITS ARE ADMINISTERED BY AMBROSE AS APPROVED BY LRA OFFICERS. LRA PAYROLL IS THEREFORE UNDER THE AMBROSE EIN: 13-3867443 AND W-2'S ARE PREPARED UNDER THAT EIN BY TRINET AMBROSE.