2023-09-15T15:00:40-05:00 2022-12-31 131655065 LUTZ AND CARR CPAS LLP 551 FIFTH AVENUE SUITE 400 NEW YORK NY 10176 990 2022-01-01 582492929 LUPUS RESEARCH ALLIANCE INC LUPU 2122182840 270 MADISON AVENUE SUITE 300 NEW YORK NY 10016 DEBRA ROSE VP AND CHIEF FINANCIAL OFFICER 2122182840 2023-09-15 1 DEBRA ROSE 999009999 0 JENNIFER COATES P02247728 2126972299 2 AAL1 IAL1 2022 2023-04-26 12:10:37Z ALBERT T ROY 270 MADISON AVENUE SUITE 300 NEW YORK NY 10016 32841344 0 X LUPUSRESEARCH.ORG X 1999 NY FREEING THE WORLD OF LUPUS. 24 24 63 500 0 0 18941837 18375553 1036685 1232995 3679888 2452805 121620 638138 23780030 22699491 15031432 17377279 0 0 6237294 7532779 65000 65000 3074858 5438357 7398867 26772083 32373925 -2992053 -9674434 110909946 98907292 41423828 35375707 69486118 63531585 X PUTTING PEOPLE WITH LUPUS AT THE CENTER OF ALL WE DO, THE LUPUS RESEARCH ALLIANCE DRIVES THE DISCOVERY & DEVELOPMENT OF NEXT GENERATION LUPUS DIAGNOSTICS AND CURATIVE TREATMENTS THROUGH INNOVATIVE RESEARCH & COLLABORATIONS. 0 0 18280972 17187962 RESEARCH:THE LUPUS RESEARCH ALLIANCE (LRA) IS THE LARGEST NON-GOVERNMENTAL, NON-PROFIT FUNDER OF LUPUS RESEARCH WORLDWIDE. THE ORGANIZATION AIMS TO TRANSFORM TREATMENT BY FUNDING THE MOST INNOVATIVE LUPUS RESEARCH, FOSTERING DIVERSE SCIENTIFIC TALENT, AND DRIVING DISCOVERY TOWARD BETTER DIAGNOSTICS AND IMPROVED TREATMENTS. LRA-FUNDED RESEARCH IS LEADING TO KEY DISCOVERIES THAT ARE IMPROVING DIAGNOSIS AND THERAPIES WHILE ADVANCING TOWARD PREVENTION AND ULTIMATELY A CURE. THE ORGANIZATION'S RESEARCH COMMITTEE OF THE BOARD OF DIRECTORS AND SCIENTIFIC ADVISORY BOARD INCLUDE TOP SCIENTIFIC EXPERTS, AND KEY LAY MEMBERS OF THE BOARD, WHO WORK WITH STAFF TO STRATEGICALLY GUIDE AND DRIVE THE RESEARCH FUNDING AGENDA. SINCE ITS INCEPTION, THE LRA HAS COMMITTED OVER $245 MILLION TO FUND LUPUS RESEARCH PROJECTS. IN 2022 ALONE, OVER $17,000,000 WAS AWARDED IN GRANTS FOR HIGHLY INNOVATIVE PROJECTS WITH THE POTENTIAL TO IMPROVE TREATMENT AS WELL AS UNDERSTAND THE CAUSES OF LUPUS AND THUS LEAD TO A CURE. BELOW IS A SUMMARY OF RESEARCH GRANTS AND PROGRAMS FUNDED BY THE LRA IN 2022: 1) 3 GLOBAL TEAM SCIENCE AWARDS WERE AWARDED FOR $3 MILLION FOR A TOTAL OF $9 MILLION OVER TWO YEARS. THESE AWARDS WILL FUND MULTIDISCIPLINARY, COLLABORATIVE AND HIGHLY SYNERGISTIC PROJECTS THAT PUSH THE BOUNDARIES OF INNOVATION AND BRIDGE RESEARCH AND CLINICAL EFFORTS IN LUPUS. THE TEAMS WILL FOCUS ON UNRAVELING HUMAN LUPUS HETEROGENEITY WITH THE AIM TO DISCOVER NEW AVENUES TO PERSONAL TREATMENT APPROACHES; 2) 7 LUPUS INNOVATION AWARD GRANTS WERE AWARDED TOTALING OVER $2 MILLION OVER TWO YEARS, THIS PROGRAM PROVIDES EARLY-STAGE SUPPORT FOR EXCEPTIONALLY CREATIVE AND INNOVATIVE APPROACHES TO MAJOR CHALLENGES IN LUPUS RESEARCH; 3) 4 LUPUS MECHANISMS AND TARGETS AWARDS TOTALING $2.4 MILLION TO SUPPORT ESTABLISHED INVESTIGATORS FOCUSED ON CHARACTERIZING LUPUS PATHOGENESIS AND IDENTIFYING AND VALIDATING MOLECULAR PATHWAYS OR DRUGGABLE TARGETS THAT COULD LEAD TO NEW OR IMPROVED THERAPIES.4) THE PACE OF FUNDING IN THE DIVERSITY IN LUPUS RESEARCH PROGRAM GAINED MOMENTUM 2022 BY FUNDING THE FOLLOWING: A. 4 ADMINISTRATIVE DIVERSITY SUPPLEMENT GRANTS TO PROMOTE DIVERSITY IN LUPUS RESEARCH WERE AWARDED TOTALING APPROXIMATELY $120,000. THESE AWARDS FUND HIGHLY QUALIFIED AND PROMISING UNDERREPRESENTED MINORITY TRAINEES TO SUPPORT THEIR RESEARCH EXPERIENCES ALIGNED WITH AN LRA PARENT AWARD. B. 3 GRANTS WERE AWARDED TO RESEARCHERS IN THE CAREER DEVELOPMENT AWARD PROGRAM THAT AIMS TO FOSTER THE DEVELOPMENT OF OUTSTANDING, UNDERREPRESENTED MINORITY SCIENTISTS AND ESTABLISH A DIVERSE COMMUNITY OF RESEARCHERS AND CLINICIANS IN THE FIELD OF LUPUS, THE PROGRAM PROVIDES UP TO $600,000 OVER FOUR YEARS TO TALENTED UNDERREPRESENTED MINORITY SCIENTISTS.C. 2 POSTDOCTORAL GRANTS FELLOWSHIP GRANTS WHICH PROVIDE FELLOWS WITH UP TO $170,000 OVER TWO YEARS TO SUPPORT THE GENERATION OF DATA AND PROGRESS NEEDED TO BECOME INDEPENDENT LUPUS RESEARCHERS.5) THE DISTINGUISHED INNOVATOR AWARD PROGRAM PROVIDES OUTSTANDING SCIENTISTS WITH SUBSTANTIAL SUPPORT TO CONDUCT HIGHLY INNOVATIVE RESEARCH TO UNCOVER THE UNDERLYING CAUSES OF LUPUS, 2 DISTINGUISHED INNOVATOR AWARDS FOR A TOTAL OF $2 MILLION WERE AWARDED OVER FOUR YEARS TO HIGHLY QUALIFIED INVESTIGATORS TO COMPLETE THE PROPOSED WORK.6) THE LUPUS INSIGHT PRIZE WAS AWARDED FOR $100,000. THIS AWARD RECOGNIZES A LEADING RESEARCHER WHO HAS MADE A MAJOR CONTRIBUTION TO THE FIELD. 7) CONTINUED FUNDING FOR TWO GRANTS AS PART OF OUR PARTNERSHIP WITH OTHER ORGANIZATIONS FOCUSED ON FINDING COMMON MECHANISMS IN AUTOIMMUNE DISEASES. THE LRA'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 PROJECTS BY THE LRA AIM TO TRANSLATE RESULTS FROM THE RESEARCH BENCH TO THE BEDSIDE AS QUICKLY AS POSSIBLE. BECAUSE THE LUPUS RESEARCH ALLIANCE'S BOARD OF DIRECTORS FUNDS THE ADMINISTRATIVE AND FUNDRAISING EXPENSES, 100% OF ALL OTHER CONTRIBUTIONS GOES TO SUPPORT THE LRA'S LUPUS RESEARCH PROGRAMS. 7351943 107085 1232995 SCIENTIFIC PROGRAMS:LUPUS RESEARCH ALLIANCE'S (LRA) SCIENTIFIC PROGRAM CONTINUED TO GROW IN 2022. THIS GROWTH WAS SPURRED BY BUILDING ON ESTABLISHED PROGRAMS AND FINDING WAYS TO CONTINUE TO EXPAND WHILE CREATING OPPORTUNITIES FOR COLLABORATION WITH DIFFERENT SECTORS. AN EXAMPLE OF THIS YEAR'S ACCOMPLISHMENTS ARE LISTED BELOW: COLLABORATED WITH LRA RESEARCH COMMITTEE OF THE BOARD AND SCIENTIFIC ADVISORY BOARD TO CONTINUE TO IMPLEMENT EFFICIENTLY OUR RESEARCH STRATEGY INTO IMPORTANT SCIENTIFIC TOOLS, PROGRAMS, AND PARTNERSHIPS AND MOVE CLOSER TO ACHIEVING LRA'S MISSION. LAUNCHED THE DIVERSITY IN LUPUS RESEARCH PROGRAM BY FUNDING FIVE INAUGURAL GRANT AWARDS. SOLIDIFIED THE SCIENTIFIC STRENGTH AND POTENTIAL OF THE GLOBAL TEAM SCIENCE AWARD BY FUNDING THREE ADDITIONAL TEAMS REPRESENTING FIVE CONTINENTS AND TACKLING A BREADTH OF KEY ISSUES IN LUPUS FROM COGNITIVE IMPAIRMENT, DISEASE REMISSION, GUT MICROBIOME, AND ANCESTRAL DRIVERS OF DISEASE. ESTABLISHMENT OF A PUBLIC PRIVATE PARTNERSHIP WITH THE FDA ON LUPUS CALLED THE LUPUS ACCELERATING BREAKTHROUGHS CONSORTIUM (LUPUS ABC). CONTINUED TO ESTABLISH KEY INFRASTRUCTURE COMPONENTS OF THE LUPUS NEXUS (LRA'S LUPUS REGISTRY AND BIOREPOSITORY) THE CLINICAL STUDY PROTOCOL (THE LUPUS LANDMARK STUDY). WORKING WITH LUPUS THERAPEUTICS, LUPUS NEXUS WILL CAPITALIZE ON CURRENT STRATEGIC OPPORTUNITIES IN THE LUPUS FIELD BY ENABLING A COLLABORATIVE, DATA-DRIVEN PLATFORM FOR THE RESEARCH COMMUNITY. THE VISION FOR THE LUPUS NEXUS IS TO TRANSFORM LUPUS RESEARCH AND DRUG DEVELOPMENT THROUGH UNPRECEDENTED INFORMATION EXCHANGE CAPABILITIES. THE PLATFORM WILL PROVIDE A COLLABORATIVE SOLUTION THAT IS INCLUSIVE OF DIVERSE PATIENT POPULATIONS DISPROPORTIONATELY AFFECTED BY LUPUS. THE LUPUS NEXUS WILL BE A SOURCE OF HIGHLY CURATED DATA TO CATALYZE GLOBAL COLLABORATION, RESEARCH INNOVATION, AND PRECISION MEDICINE APPROACHES TO ACCELERATE LUPUS RESEARCH AND DRUG DEVELOPMENT. EXPANDED LRA'S RESEARCH PORTFOLIO WITH NEW, INNOVATIVE, AND POTENTIALLY IMPACTFUL RESEARCH PROJECTS: TWO DISTINGUISHED INNOVATOR AWARDS, FOUR LUPUS MECHANISMS AND TARGETS AWARD, AND SEVEN LUPUS INNOVATION AWARDS. ALSO FURTHER OPTIMIZED THE LUPUS INSIGHT PRIZE PROGRAM TO STIMULATE THE SUBMISSION OF A ROBUST POOL OF COMPELLING NOMINATIONS. MAINTAINED A STRONG ENGAGEMENT OF THE LUPUS INDUSTRY COUNCIL THROUGH THE LUPUS ABC, LUPUS NEXUS, AND THE BICLA/SRI-4 PROJECT. THE LATTER WAS PRESENTED AT THE NOVEMBER 2022 ANNUAL COLLEGE OF RHEUMATOLOGY MEETING. AS PART OF THE LRA'S COMMITMENT TO CROSS-SECTOR AND CROSS-DISCIPLINE PARTNERSHIPS TO FOSTER THE MOST INNOVATIVE AND PRODUCTIVE RESEARCH ENVIRONMENT, BOLSTERED LRA'S CONVENING POWER AND SPEARHEAD NEW THINKING ABOUT A KEY AREA IN LUPUS RESEARCH BY ORGANIZING AND CONVENING A HIGHLY SUCCESSFUL SCIENTIFIC MEETING ON THE "IMPACT OF ANCESTRY, RACE, AND RACIAL INEQUALITIES ON LUPUS." CONTINUED TO NURTURE COLLABORATION BY HOSTING INTERNAL AND EXTERNAL MEETINGS. THIS INCLUDED RESEARCH COMMITTEE MEETINGS WHERE MEMBERS OF OUR BOARD OF DIRECTORS AS WELL AS TOP-LEVEL RESEARCHERS DISCUSSED OUR PORTFOLIO AND UPCOMING STRATEGIC STEPS; SCIENTIFIC ADVISORY BOARD MEETINGS WHERE HIGHLY REGARDED SCIENTIFIC ADVISORS REVIEW GRANT APPLICATION SUBMISSIONS AND DISCUSS FUTURE AND OVERALL RESEARCH STRATEGY FOR THE ORGANIZATION; GRANT SPECIFIC STUDY SECTIONS WHERE INVITED RESEARCHERS DISCUSSED AND REVIEWED APPLICATIONS SUBMITTED TO THE LRA. THE LRA FOUNDED LUPUS THERAPEUTICS, LLC AS AN AFFILIATE OF THE LRA IN 2018 TO RUN LUCIN TO ADVANCE CLINICAL TRIALS AND FACILITATE THE DEVELOPMENT OF MUCH NEEDED NEW LUPUS TREATMENTS. THE LRA COMMITTED OVER $4.3 MILLION IN 1-YEAR GRANTS IN 2021 TO CONTINUE FUNDING THRU 2023 OF TOP ACADEMIC CENTERS TO FOSTER CLINICAL TRIAL PARTICIPATION IN LUCIN. LUPUS THERAPEUTICS (LT) IS COMMITTED TO DELIVERING CUSTOMIZED SERVICES AND BY PARTNERING WITH AND LEVERAGING THE EXPERTS WITHIN OUR NORTH AMERICAN-BASED LUPUS CLINICAL INVESTIGATORS NETWORK (LUCIN) AND THOSE IMPACTED BY LUPUS, LT STRIVES TO OPTIMIZE ENGAGEMENT AND DRIVE RESULTS. LT CUSTOMIZED SERVICES ARE FOCUSED ON ENGAGING THE LUPUS PATIENT AND SCIENTIFIC COMMUNITY AS KEY CONTRIBUTORS TO DRUG DEVELOPMENT ENDEAVORS TO INCREASE THE PROBABILITY OF STUDY SUCCESS. LT'S VALUE PROPOSITION INCLUDES -BROAD FOOTPRINT WITHIN THE LUPUS PATIENT COMMUNITY -PARTNERS WITH >200 LUPUS KOLS AND NORTH AMERICAN ACADEMIC CENTERS OF EXCELLENCE -FINANCIAL AND COMMUNITY INCENTIVES FOR SITES THAT PRIORITIZE LUCIN-SANCTIONED STUDIES -ACCELERATED STUDY START-UP TIMELINES AND SUPPORT THROUGHOUT STUDY CONDUCT -FACILITATION OF RELATIONSHIPS AND MUTUAL TRUST BETWEEN SITES AND SPONSORS 642971 82232 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; INCREASE FEDERAL FUNDING FOR LUPUS RESEARCH BY INCREASING OVERALL NATIONAL INSTITUTES OF HEALTH (NIH) FUNDS AND SECURE ADDITIONAL FUNDING FOR LUPUS RESEARCH THROUGH OTHER KEY FEDERAL AGENCIES INCLUDING THE DEPARTMENT OF DEFENSE (DOD); AND ENSURE THE PATIENT VOICE IS INCORPORATED IN THE DRUG DEVELOPMENT PROCESS. VOLUNTEERS ACROSS THE COUNTRY HELP AMPLIFY THESE OUTREACH EFFORTS.THROUGH 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 IN THE PEER REVIEWED MEDICAL PROGRAM. IN 2017, LUPUS RESEARCH ALLIANCE ADVOCACY EFFORTS SUCCEEDED IN THE ESTABLISHMENT OF THE LUPUS RESEARCH PROGRAM UNDER THE CDMRP. OVER THE PROGRAM'S FIRST THREE YEARS, $5 MILLION WAS ALLOCATED EACH YEAR SPECIFICALLY FOR LUPUS; THROUGH THE LUPUS RESEARCH ALLIANCE'S CONTINUED EFFORTS, THIS AMOUNT WAS INCREASED TO $10M IN THE FISCAL YEAR (FY) 2020 DEFENSE APPROPRIATIONS BILL AND HAS CONTINUED AT THAT LEVEL THROUGH FY 2023. OVER SEVEN YEARS, $55M WAS SECURED UNDER THIS PROGRAM, AND THE LRA HAS REQUESTED AN INCREASE TO $15M FOR FY 2024.THE LRA COLLABORATED WITH THE LUPUS AND ALLIED DISEASES ASSOCIATION (LADA) AND LUPUS FOUNDATION OF AMERICA (LFA) IN 2017 ON THE LUPUS PATIENT-FOCUSED DRUG DEVELOPMENT (PFDD) INITIATIVE. THIS EFFORT CULMINATED IN A REPORT 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. THE LRA CONTINUES TO WORK TO BRING THE VOICE OF THE COMMUNITY TO THE DRUG REVIEW PROCESS BY RESPONDING TO RELEVANT CALLS FROM THE FDA FOR COMMENTS INCLUDING THOSE FOCUSED ON ENSURING CLINICAL TRIAL PARTICIPANTS REPRESENT THE REAL-WORLD DEMOGRAPHIC CHARACTERISTICS OF PEOPLE LIVING WITH THE DISEASE. THE LRA HAS WORKED WITH MEMBERS OF CONGRESS TO INCLUDE LANGUAGE IN THE REPORT THAT ACCOMPANIES THE AGRICULTURE-RURAL DEVELOPMENT-FDA FUNDING BILL FOR FISCAL YEAR 2022 AND 2023.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 THE UNDERSTANDING OF AND TREATMENT FOR LUPUS. EVERY YEAR, THE LRA TRAINS AND ORGANIZES ADVOCATES FROM ACROSS THE COUNTRY TO MEET WITH LEGISLATORS ON CAPITOL HILL. THE GOAL IS TO INCREASE AWARENESS OF LUPUS AND THE IMPACT IT HAS ON PEOPLE'S DAILY LIVES TO MEMBERS OF CONGRESS AND TO REQUEST THEIR SUPPORT FOR INCREASED FUNDING FOR LUPUS RESEARCH FROM FEDERAL PROGRAMS SUCH AS THE NIH AND CDMRP. 26275886 1 1 0 1 0 0 0 0 0 1 1 0 0 0 1 0 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 97 0 1 63 1 0 0 0 0 0 1 1 0 0 0 0 0 0 X 24 24 1 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 1 0 AL AK AZ AR CA CO CT FL GA HI IL KS KY ME MD MA MI MN MS MO NH NJ NM NY NC ND OH OK OR PA RI SC TN VA WA WV WI X X X DEBRA ROSE 6468846000 270 MADISON AVE SUITE 300 NEW YORK NY 10016 IRA AKSELRAD CO-CHAIR 1.00 X X 0 0 0 RICHARD K DESCHERER CO-CHAIR 1.00 X X 0 0 0 JOSEPH MAURIELLO TREASURER 1.00 X X 0 0 0 BRENDA BLACKMON SECRETARY 1.00 X X 0 0 0 BISHOP RUDY V CARLTON DIRECTOR 1.00 X 0 0 0 WILLIE COLON DIRECTOR 1.00 X 0 0 0 THOMAS O DANIEL DIRECTOR 1.00 X 0 0 0 JENNIE DESCHERER DIRECTOR 1.00 X 0 0 0 KATEY DRISCOLL DIRECTOR 1.00 X 0 0 0 SIR MARC FELDMANN DIRECTOR 1.00 X 0 0 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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 2D - OTHER ADJUSTMENTS: IMPAIRMENT LOSS ON OPERATING LEASE RIGHT-OF-USE ASSET 1,910,103. PART XII, LINE 4B - OTHER ADJUSTMENTS: RETURN OF GRANTS & ADJUSTMENTS 9,771. PART PART XII, LINE 4B UNUSED PORTIONS OF GRANTS RETURNED TO LRA THAT WERE PAID IN PREVIOUS YEARS IN THE AMOUNT OF $9,771. THESE AMOUNTS ARE RECONCILING ITEMS BETWEEN THE REVENUE AND EXPENSES FROM THE AUDITED FINANCIAL STATEMENTS AND THOSE REPORTED ON FORM 990. 1 NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES 0 0 GRANTS TO RECIPIENTS 680000 EAST ASIA AND THE PACIFIC 0 0 GRANTS TO RECIPIENTS 2877407 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM 0 0 GRANTS TO RECIPIENTS 3253457 0 0 0 0 0 0 6810864 0 6810864 NORTH AMERICA LUPUS RESEARCH 660000 ACH 0 NORTH AMERICA LUPUS RESEARCH 10000 ACH 0 NORTH AMERICA LUPUS RESEARCH 10000 WIRE 0 EAST ASIA AND THE PACIFIC LUPUS RESEARCH 2827071 ACH 0 EAST ASIA AND THE PACIFIC LUPUS RESEARCH 8611 WIRE 0 EAST ASIA AND THE PACIFIC LUPUS RESEARCH 41725 WIRE 0 EUROPE (INCLUDING ICELAND AND GREENLAND) LUPUS RESEARCH 2821485 WIRE 0 EUROPE (INCLUDING ICELAND AND GREENLAND) LUPUS RESEARCH 10000 WIRE 0 EUROPE (INCLUDING ICELAND AND GREENLAND) LUPUS RESEARCH 8611 WIRE 0 EUROPE (INCLUDING ICELAND AND GREENLAND) LUPUS RESEARCH 124834 WIRE 0 EUROPE (INCLUDING ICELAND AND GREENLAND) LUPUS RESEARCH 288527 WIRE 0 3 5 0 0 0 0 0 0 PART I, LINE 2: PRE AWARD AND APPLICATION PHASE: BEFORE A GRANT IS AWARDED, DURING THE APPLICATION PHASE, THE SPONSORING INSTITUTION (SI) MUST AGREE THAT THEY WILL AGREE TO THE TERMS AND CONDITIONS OUTLINED IN THE LUPUS RESEARCH ALLIANCE (LRA)'S GRANT-SPECIFIC POLICY STATEMENT FOR RESEARCH GRANTS THAT INCLUDE: A. 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. B. 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 THROUGHOUT THE PROJECT PERIOD. C. AGREE TO GET APPROVAL FROM THE LRA IF THERE NEEDS TO BE A SIGNIFICANT CHANGE TO THE BUDGET AS SUBMITTED. D. AGREE TO GET APPROVAL FROM THE LRA IF ADDITIONAL TIME IS NEEDED TO COMPLETE THE PROJECT WORK. E. AGREE TO SUBMIT ALL DELIVERABLES AND REPORTS AS SCHEDULED: (A) ANNUAL PROGRESS REPORTS AND (B) ANNUAL FINANCIAL REPORTS ARE REQUIRED. F. TRAVEL FUNDS PROVIDED AS PART OF THE PROJECT ARE EXPECTED TO BE USED TO ATTEND THE LRA'S ANNUAL MEETING - FORUM FOR DISCOVERY. G. CONFIRMATION THAT THERE IS NO OTHER ACTIVE OR PENDING SUPPORT FOR THE SPECIFIC PROJECT THAT IS THE SUBJECT OF THE GRANT. POST AWARD PROJECT PHASE: THE PI AND A REPRESENTATIVE FROM THE SI MUST SUBMIT 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. THAT THERE IS NO OVERLAPPING SOURCE OF SUPPORT FOR THE PROJECT THAT IS THE SUBJECT OF THE AWARD. OTHER FUNDING THAT MIGHT BE CONSTRUED AS OVERLAPPING, MUST BE EXPLAINED IN DETAIL. D. THAT THE PI WILL ACCEPT RESPONSIBILITY FOR THE SCIENTIFIC AND TECHNICAL CONDUCT OF THE PROJECT AND FOR THE PROVISION OF ALL PROGRESS REPORTS REQUIRED FROM INVESTIGATORS FUNDED BY A GRANT FROM THE LRA. E. PI'S WILLINGNESS TO COMPLETE A BRIEF SURVEY AND SUBMIT A COPY OF THEIR UP-TO-DATE CV TO THE LRA TWO AND FIVE YEARS AFTER THE GRANT END DATE. ALL SI'S RECEIVE A PAYMENT AND DELIVERABLES SCHEDULE AND THE PROJECT IS MONITORED BY: A. PERIODIC PROGRESS REPORTS B. PERIODIC FINAL REPORTS C. ANNUAL MILESTONES SCHEDULE D. ADHERENCE TO LRA TERMS AND CONDITIONS GRANT CHANGES: WHEN EXTENSIONS ARE AWARDED, ADDITIONAL PROGRESS REPORTS AND FINANCIAL REPORTS ARE REQUIRED. AT THE END OF THE GRANT, FINAL PROGRESS AND FINANCIAL REPORTS ARE REQUIRED; UNSPENT AMOUNTS OVER $500 ARE TO BE RETURNED TO THE LRA. A. THE LRA MUST BE LISTED AS A FUNDER IN ANY PUBLISHED PAPERS AND ORAL OR POSTER PRESENTATIONS. B. THE SI MUST SUBMIT A COPY OF THE IRS DETERMINATION LETTER OR OTHER TAX GOVERNING INSTITUTION CONFIRMING THE TAX STATUS OF THE SI. PART III ACCOUNTING METHOD: X X X X X 1 DS CONSULTING GROUP 845 THIRD AVENUE 6TH FLOOR NEW YORK NY 10022 SPECIAL EVENT CONSULTANT NY GALA 1 3914302 65000 3914302 3914302 65000 3914302 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 4272623 3897820 374803 374803 WALK-A-THONS 1482394 1308485 173909 15750 11175 146984 5755017 5206305 548712 15750 11175 521787 548712 0 SCHEDULE G, PART I, LINE 2B, COLUMN (V) DS CONSULTING PLANNED AND MANAGED LRA'S GALA EVENT. CONTRACT AMOUNT FOR THE PERIOD COVERING 1/1/22 - 12/31/22 WAS $65,000 PLUS REIMBURSABLE EXPENSES. 1 BENAROYA RESEARCH INSTITUTE ATVIRGINIA MASON 1201 9TH AVE SEATTLE WA 98101 910653422 501(C)(3) 11418 0 BOOK LUPUS RESEARCH BOSTON CHILDREN'S HOSPTIAL 300 LONGWOOD AVENUE BOSTON MA 02115 042774441 501(C)(3) 8611 0 BOOK LUPUS RESEARCH BRIGHAM AND WOMEN'S HOSPITAL 77 AVENUE LOUIS PASTEUR BOSTON MA 02115 042312909 501(C)(3) 166423 0 BOOK LUPUS RESEARCH BROAD INSTITUTE INC SEVEN CAMBRIDGE CENTER CAMBRIDGE MA 02142 263428781 501(C)(3) 30908 0 BOOK LUPUS RESEARCH CHILDREN'S HOSPITAL MEDICAL CENTER CINCINNATI 3333 BURNET AVE MLC 9002 CINCINNATI OH 45229 310833936 501(C)(3) 277504 0 BOOK LUPUS RESEARCH DARTMOUTH-HITCHCOCK CLINIC 1 MEDICAL CENTER DR LEBANON NH 03756 222519596 501(C)(3) 281461 0 BOOK LUPUS RESEARCH EMORY UNIVERSITY 1762 CLIFTON RD NE ATLANTA GA 30322 580566256 501(C)(3) 49006 0 BOOK LUPUS RESEARCH FOUNDATION FOR THE NATIONAL INSTITUTES OF HEALTH INC 9650 ROCKVILLE PIKE BETHESDA MD 20814 521986675 501(C)(3) 100000 0 BOOK LUPUS RESEARCH HOSPITAL FOR SPECIAL SURGERY 535 E 70TH STREET NEW YORK NY 10021 131624135 501(C)(3) 11481 0 BOOK LUPUS RESEARCH JACKSON LABORATORY 600 MAIN STREET BAR HARBOR ME 04609 010211513 501(C)(3) 49006 0 BOOK LUPUS RESEARCH JOHN'S HOPKINS UNIVERSITY 3910 KESWICK ROAD STE N2100 BALTIMORE MD 21211 520595110 501(C)(3) 582761 0 BOOK LUPUS RESEARCH MASSACHUSETTS GENERAL HOSPITAL 55 FRUIT STREET BOSTON MA 02114 042697983 501(C)(3) 416389 0 BOOK LUPUS RESEARCH MEDICAL UNIVERSITY OF SOUTH CAROLINA 179 ASHLEY AVENUE CHARLESTON SC 29425 576028985 SECTION 115 - SC STA 17221 0 BOOK LUPUS RESEARCH MONTEFIORE MEDICAL CENTER 111 EAST 210TH STREET BRONX NY 10467 131740114 501(C)(3) 25000 0 BOOK LUPUS RESEARCH NEW YORK UNIVERSITY SCHOOL OF MEDICINE 550 FIRST AVENUE NEW YORK NY 10016 135562308 501(C)(3) 474748 0 BOOK LUPUS RESEARCH REGENTS OF THE UNIVERSITY OF CALIFORNIA AT BERKELEY 2200 UNIVERSITY AVE BERKELEY CA 94720 946002123 501(C)(3) 8611 0 BOOK LUPUS RESEARCH ST JUDE CHILDREN'S HOSPITAL 262 DANNY THOMAS PL MEMPHIS TN 381053678 620646012 501(C)(3) 929380 0 BOOK LUPUS RESEARCH STANFORD UNIVERSITY 3145 PORTER DRIVE PALO ALTO CA 94304 941156365 501(C)(3) 291389 0 BOOK LUPUS RESEARCH STATE UNIVERSITY OF NY AT STONY BROOK ONE LINCOLN CENTER SYRACUSE NY 13202 141368361 501(C)(3) 8610 0 BOOK LUPUS RESEARCH TEXAS TECH UNIVERSITY HEALTH SCIENCES CENTER 3601 4TH STREET LUBBOCK TX 79430 752668014 TX STATE GOVERMENT 26044 0 BOOK LUPUS RESEARCH THE FEINSTEIN INSTITUTE FOR MEDICAL RESEARCH 350 COMMUNITY DRIVE MANHASSET NY 11030 112673595 501(C)(3) 3390307 0 BOOK LUPUS RESEARCH THE REGENTS OF THE UNIVERSITY OF CALIFORNIA SAN DIEGO 9500 GILMAN DRIVE MC0934 LA JOLLA CA 92093 956006144 501(C)(3) 8611 0 BOOK LUPUS RESEARCH THE UNIVERSITY OF CHICAGO 5801 SOUTH ELLIS AVENUE STE 501 CHICAGO IL 60637 362177139 501(C)(3) 11178 0 BOOK LUPUS RESEARCH THE UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL 6000 FELDWOOD ROAD COLLEGE PARK GA 30349 566001393 501(C)(3) 87085 0 BOOK LUPUS RESEARCH TULANE UNIVERSITY AKA THE TULANE EDUCATIONAL FUND 200 BROADWAY ST STE 120 NEW ORLEANS LA 70118 720423889 501(C)(3) 29369 0 BOOK LUPUS RESEARCH UNIVERSITY OF ALABAMA AT BIRMINGHAM 1530 3RD AVE S BIRMINGHAM AL 35294 636005396 501(C)(3) 29369 0 BOOK LUPUS RESEARCH UNIVERSITY OF CALIFORNIA SAN FRANCISCO 2200 UNIVERSITY HALL BERKELEY CA 94720 946036493 501(C)(3) 8611 0 BOOK LUPUS RESEARCH UNIVERSITY OF COLORADO ANSCHUTZ MEDICAL CAMPUS 3100 MARINE ST 6TH FL BOULDER CO 80309 846000555 501(C)(3) 10000 0 BOOK LUPUS RESEARCH UNIVERSITY OF FLORIDA 207 TIGERT HALL GAINSEVILLE FL 32611 596002052 FL STATE GOVERMENT 296844 0 BOOK LUPUS RESEARCH UNIVERSITY OF MASSACHUSETTS MEDICAL SCHOOL 55 LAKE AVENUE NORTH WORCESTER MA 01655 043167325 MA STATE GOVERMENT 580139 0 BOOK LUPUS RESEARCH UNIVERSITY OF MICHIGAN 503 THOMPSON STREET ANN ARBOR MI 48109 386006309 501(C)(3) 571547 0 BOOK LUPUS RESEARCH UNIVERSITY OF MISSISSIPPI MEDICAL CENTER 2500 NORTH STATE STREET JACKSON MS 39216 646008520 501(C)(3) 20000 0 BOOK LUPUS RESEARCH UNIVERSITY OF ROCHESTER 518 HYLAN BUILDING ROCHESTER NY 14627 160743209 501(C)(3) 571547 0 BOOK LUPUS RESEARCH UNIVERSITY OF WASHINGTON 3917 UNIVERSITY WAY NE SEATTLE WA 98195 916001537 SECTION 115 - WA STA 30000 0 BOOK LUPUS RESEARCH VANDERBILT UNIVERSITY MEDICAL CENTER 1211 MEDICAL CENTER DRIVE NASHVILLE TN 37232 352528741 501(C)(3) 41725 0 BOOK LUPUS RESEARCH YALE UNIVERSITY BOX 208239 NEW HAVEN CT 06520 060646973 501(C)(3) 1029380 0 BOOK LUPUS RESEARCH 23 0 LUPUS EMERGENCY GRANT - $500 MAX PER PERSON 181 82232 BILLS LUPUS EMERGENCY GRANT - $500 MAX PER PERSON PART I, LINE 2: PRE AWARD AND APPLICATION PHASE: BEFORE A GRANT IS AWARDED, DURING THE APPLICATION PHASE, THE SPONSORING INSTITUTION (SI) MUST AGREE THAT THEY WILL AGREE TO THE TERMS AND CONDITIONS OUTLINED IN THE LUPUS RESEARCH ALLIANCE (LRA)'S GRANT-SPECIFIC POLICY STATEMENT FOR RESEARCH GRANTS THAT INCLUDE: A. 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. B. AGREE THAT THE 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 THROUGHOUT THE PROJECT PERIOD. C. AGREE TO GET APPROVAL FROM THE LRA IF THERE NEEDS TO BE A SIGNIFICANT CHANGE TO THE BUDGET AS SUBMITTED. D. AGREE TO GET APPROVAL FROM THE LRA IF ADDITIONAL TIME IS NEEDED TO COMPLETE THE PROJECT WORK. E. AGREE TO SUBMIT ALL DELIVERABLES AND REPORTS AS SCHEDULED: (A) ANNUAL PROGRESS REPORTS AND (B) ANNUAL FINANCIAL REPORTS ARE REQUIRED. F. TRAVEL FUNDS PROVIDED AS PART OF THE PROJECT ARE EXPECTED TO BE USED TO ATTEND THE LRA'S ANNUAL MEETING - FORUM FOR DISCOVERY. G. CONFIRMATION THAT THERE IS NO OTHER ACTIVE OR PENDING SUPPORT FOR THE SPECIFIC PROJECT THAT IS THE SUBJECT OF THE GRANT. POST AWARD PROJECT PHASE: THE PI AND A REPRESENTATIVE FROM THE SI MUST SUBMIT 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. THAT THERE IS NO OVERLAPPING SOURCE OF SUPPORT FOR THE PROJEC TTHAT IS THE SUBJECT OF THE AWARD. OTHER FUNDING THAT MIGHT BE CONSTRUED AS OVERLAPPING, MUST BE EXPLAINED IN DETAIL. D. THAT THE PI WILL ACCEPT RESPONSIBILITY FOR THE SCIENTIFIC AND TECHNICAL CONDUCT OF THE PROJECT AND FOR THE PROVISION OF ALL PROGRESS REPORTS REQUIRED FROM INVESTIGATORS FUNDED BY A GRANT FROM THE LRA. E. PI'S WILLINGNESS TO COMPLETE A BRIEF SURVEY AND SUBMIT A COPY OF THEIR UP-TO-DATE CV TO THE LRA TWO AND FIVE YEARS AFTER THE GRANT END DATE. ALL SI'S RECEIVE A PAYMENT AND DELIVERABLES SCHEDULE AND THE PROJECT IS MONITORED BY: A. PERIODIC PROGRESS REPORTS B. PERIODIC FINAL REPORTS C. ANNUAL MILESTONE SCHEDULE D. ADHERENCE TO LRA TERMS AND CONDITIONS GRANT CHANGES: WHEN EXTENSIONS ARE AWARDED, ADDITIONAL PROGRESS REPORTS AND FINANCIAL REPORTS ARE REQUIRED. AT THE END OF THE GRANT, FINAL PROGRESS AND FINANCIAL REPORTS ARE REQUIRED; UNSPENT AMOUNTS OVER $500 ARE TO BE RETURNED TO THE LRA. THE LRA MUST BE LISTED AS A FUNDER IN ANY PUBLISHED PAPERS AND ORAL OR POSTER PRESENTATIONS. THE SI MUST SUBMIT A COPY OF THE IRS DETERMINATION LETTER OR OTHER TAX GOVERNING INSTITUTION CONFIRMING THE TAX STATUS OF THE SI. X X X X X X 0 0 0 0 0 0 0 0 0 ALBERT ROY CEO AND PRESIDENT 274569 0 60000 0 1634 0 30500 0 53623 0 420326 0 0 0 KENNETH M FARBER CEO AND PRESIDENT (PAST) 393795 0 0 0 12781 0 31000 0 31583 0 469159 0 0 0 DEBRA ROSE VP AND CHIEF FINANCE OFFICER 193200 0 30000 0 2960 0 25116 0 24169 0 275445 0 0 0 TEODORA STAEVA VP AND CHIEF SCIENTIFIC OFFICER 267534 0 50000 0 1979 0 24800 0 43828 0 388141 0 0 0 ANDREA O'NEILL VP AND CHIEF DEVELOPMENT OFFICER 226600 0 50000 0 1823 0 30426 0 20818 0 329667 0 0 0 PENELOPE MITCHELL VP OF COMMUNICATIONS 173933 0 10000 0 2522 0 14123 0 24919 0 225497 0 0 0 JONATHAN MARKS DIRECTOR OF CORPORATE DEVELOPMENT 146200 0 1000 0 931 0 16192 0 35189 0 199512 0 0 0 DEVON KELLY LUPUS NEXUS DIRECTOR 155175 0 2500 0 2126 0 13192 0 24218 0 197211 0 0 0 DOREY NEILINGER SENIOR DIRECTOR OF PHILANTHROPY 169200 0 5000 0 3229 0 19162 0 21531 0 218122 0 0 0 DIANE GROSS NATIONAL DIRECTOR OF ADVOCACY 142946 0 750 0 1385 0 15807 0 31247 0 192135 0 0 0 EBONY SCOTT HEALTH EQUITY DIRECTOR 133900 0 2500 0 479 0 10507 0 23529 0 170915 0 0 0 X 10 270634 AVG STOCK VALUE 0 1 1 PART I, LINE 32B: LRA HAS AN ACCOUNT WITH MORGAN STANLEY, WHICH LRA USES TO SELL THE CONTRIBUTIONS IT RECEIVES THOUGH STOCKS. FORM 990, PART VI, SECTION A, LINE 2 IRA AKSELRAD AND ROBERT WOOD JOHNSON, IV (PAST CHAIRMAN OF THE BOARD), HAVE A BUSINESS RELATIONSHIP. RICHARD K. DESCHERER (CO-CHAIR) AND JENNIE DESCHERER HAVE A FAMILY RELATIONSHIP. FORM 990, PART VI, SECTION B, LINE 11B AFTER PREPARATION OF FORM 990 BY LRA'S AUDITOR, LUTZ AND CARR, THE 990 IS REVIEWED BY THE LRA'S EXECUTIVE OFFICERS, THE CHIEF FINANCIAL 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 NEXT SCHEDULED 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 2022, THE COMMITTEE REVIEWED AND APPROVED BASE SALARIES, ANNUAL COST OF LIVING ADJUSTMENTS AND BONUSES FOR ALL STAFF. FORM 990, PART VI, SECTION C, LINE 19 THE ORGANIZATION'S GOVERNING DOCUMENTS ARE AVAILABLE UPON REQUEST, THE CONFLICT OF INTEREST POLICY AND FINANCIAL STATEMENTS ARE ALSO AVAILABLE UPON REQUEST AND ARE ON THE FINANCIALS PAGE OF OUR WEBSITE AND ON GUIDESTAR.ORG FORM 990, PART XI, LINE 9: REFUND OF GRANTS 9,771. CANCELLED GRANTS 4,854,118. IMPAIRMENT LOSS ON OPERATING LEASE RIGHT-OF0USE ASSET -1,910,103. FORM 990, PART V, QUESTION 2A THE LRA CONTRACTS WITH TRINET, A PROFESSIONAL EMPLOYER ORGANIZATION (PEO), TO PROVIDE PAYROLL AND BENEFITS AS A CO-EMPLOYER WITH THE LRA. LRA PAYROLL AND BENEFITS ARE ADMINISTERED BY TRINET AS APPROVED BY LRA OFFICERS. LRA PAYROLL IS THEREFORE UNDER THE TRINET EIN: 13-3867443 AND W-2'S ARE PREPARED UNDER THAT EIN BY TRINET. LUPUS THERAPEUTICS LLC 270 MADISON AVENUE NEW YORK NY 10016 823984908 LRA'S CLINICAL TRIAL AFFILIATE, OVERSEEING CLINICAL RESEARCH ACTIVITY NY 1942523 1314491 YES