2024-09-20T12:28:42-05:00 2023-12-31 131655065 LUTZ AND CARR CPAS LLP 551 FIFTH AVENUE SUITE 400 NEW YORK NY 10176 990 2023-01-01 582492929 LUPUS RESEARCH ALLIANCE INC LUPU 6468846000 270 MADISON AVENUE SUITE 300 NEW YORK NY 10016 DEBRA ROSE VP AND CHIEF FINANCIAL OFFICER 2122182840 2024-09-17 1 0 JENNIFER COATES P02247728 2126972299 2023 2024-08-08 14:25:15Z ALBERT T ROY 270 MADISON AVENUE SUITE 300 NEW YORK NY 10016 56240014 0 X LUPUSRESEARCH.ORG X 1999 NY FREEING THE WORLD OF LUPUS. 25 25 73 500 0 0 18375553 41038661 1232995 1197560 2452805 8063403 638138 561873 22699491 50861497 17377279 16607966 0 0 7532779 9057340 65000 72500 3718497 7398867 9667445 32373925 35405251 -9674434 15456246 98907292 111947130 35375707 36633486 63531585 75313644 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 14963989 13851951 RESEARCH:THE LUPUS RESEARCH ALLIANCE (LRA), THE LARGEST NON-GOVERNMENTAL, PRIVATE FUNDER OF LUPUS RESEARCH WORLDWIDE: FUNDS INNOVATIVE RESEARCH THAT SPANS THE SPECTRUM FROM FOUNDATIONAL TO CLINICAL RESEARCH. FOSTERS DIVERSE SCIENTIFIC TALENT, STIMULATES COLLABORATIONS, AND DRIVES DISCOVERIES TO TRANSFORM TREATMENT WHILE ADVANCING TOWARD A CURE. HAS INVESTED NEARLY $260 MILLION IN LUPUS RESEARCH THROUGH 560+ RESEARCH GRANTS. SUPPORTS RESEARCH THAT HAS CONTRIBUTED TO THE IDENTIFICATION OR FURTHER VALIDATION OF AT LEAST 15 DIFFERENT DISEASE PATHWAYS IN LUPUS AND HAS ENABLED THE DISCOVERY, PROOF OF CONCEPT AND DEVELOPMENT OF MORE THAN A DOZEN DIFFERENT THERAPIES FOR LUPUS. 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.IN 2023 ALONE, APPROXIMATELY $13.8 MILLION WAS AWARDED IN GRANTS FOR 26 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 2023: 1) THE GLOBAL TEAM SCIENCE AWARD PROGRAM AWARDED 1 GRANT FOR $3 MILLION. THIS GRANT PROVIDES FUNDING FOR A MULTIDISCIPLINARY, COLLABORATIVE AND HIGHLY SYNERGISTIC PROJECT THAT WILL PUSH THE BOUNDARIES OF INNOVATION AND BRIDGE RESEARCH AND CLINICAL EFFORTS IN LUPUS. THE TEAM WILL FOCUS ON UNRAVELING HUMAN LUPUS HETEROGENEITY WITH THE AIM TO DISCOVER NEW AVENUES TO PERSONAL TREATMENT APPROACHES; 2) THE DISTINGUISHED INNOVATOR AWARD PROGRAM PROVIDES OUTSTANDING SCIENTISTS WITH SUBSTANTIAL SUPPORT TO CONDUCT HIGHLY INNOVATIVE RESEARCH TO UNCOVER THE UNDERLYING CAUSES OF LUPUS, 1 DISTINGUISHED INNOVATOR AWARDS FOR A TOTAL OF $1 MILLION WAS AWARDED.3) 7 LUPUS MECHANISMS AND TARGETS AWARDS TOTALING $4.2 MILLION 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) 9 LUPUS INNOVATION AWARD GRANTS WERE AWARDED TOTALING ALMOST $3 MILLION OVER TWO YEARS, THIS PROGRAM PROVIDES EARLY-STAGE SUPPORT FOR EXCEPTIONALLY CREATIVE AND INNOVATIVE APPROACHES TO MAJOR CHALLENGES IN LUPUS RESEARCH; 5) THE PACE OF FUNDING IN THE DIVERSITY IN LUPUS RESEARCH PROGRAM GAINED MOMENTUM 2023 BY FUNDING THE FOLLOWING: A. 3 ADMINISTRATIVE DIVERSITY SUPPLEMENT GRANTS TO PROMOTE DIVERSITY IN LUPUS RESEARCH WERE AWARDED TOTALING APPROXIMATELY $60,000. THESE AWARDS FUND HIGHLY QUALIFIED AND PROMISING UNDERREPRESENTED MINORITY TRAINEES TO SUPPORT THEIR RESEARCH EXPERIENCES ALIGNED WITH AN LRA PARENT AWARD. B. 4 GRANTS TOTALING 2.4 MILLION 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. 1 POSTDOCTORAL GRANTS FELLOWSHIP GRANT 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.6) THE LUPUS INSIGHT PRIZE WAS AWARDED FOR $100,000. THIS AWARD RECOGNIZES A LEADING RESEARCHER WHO HAS MADE A MAJOR CONTRIBUTION RELEVANT TO LUPUS. THE LRA IS AN ORGANIZATION OF PARTNERSHIPS, BRINGING TOGETHER THE KEY PLAYERS IN THE FIGHT AGAINST LUPUS -- OUR GRANTEES, SCIENTIFIC ADVISORS, CLINICIANS, THE BIOPHARMACEUTICAL INDUSTRY, THE U.S. GOVERNMENT, AND PEOPLE LIVING WITH LUPUS. THE LRA'S UNIQUE FUNDING MODEL SUPPORTS PROMISING RESEARCH EFFORTS WITH THE GOAL OF IMPROVING THE LIVES OF PEOPLE WITH LUPUS SOON. 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. 12470434 2632847 1197560 SCIENTIFIC PROGRAMS:IN 2023, THE LUPUS RESEARCH ALLIANCE (LRA) MAINTAINED THE MOMENTUM OF ITS SCIENTIFIC PROGRAMS. THE LRA'S PROGRAMS' GROWTH WAS DRIVEN BY BUILDING ON ESTABLISHED PROGRAMS WHILE CREATING OPPORTUNITIES FOR COLLABORATION WITH DIFFERENT SECTORS. NOTABLE ACHIEVEMENTS FROM 2023 INCLUDE THE FOLLOWING: COLLABORATED WITH LRA RESEARCH COMMITTEE OF THE BOARD AND SCIENTIFIC ADVISORY BOARD TO BOTH IMPLEMENT EFFICIENTLY OUR EXISTING RESEARCH STRATEGY AND TO DEVELOP AN UPDATED PLAN FOR THE NEXT FIVE YEARS. DEVELOPED AN AMBITIOUS RESEARCH STRATEGIC PLAN FOR THE LRA FOR THE NEXT FIVE YEARS (2024-2028). COMPLETED THE MOST COMPREHENSIVE RESEARCH PORTFOLIO EVALUATION FOR THE LRA TO DATE GENERATING SUBSTANTIAL DATA ON THE OUTCOMES OF LRA'S RESEARCH INVESTMENTS THAT IS BEING USED TO REFINE LRA'S RESEARCH PORTFOLIO AND TO RAISE ADDITIONAL FUNDS BY DEVELOPMENT. EXPANDED LRA'S RESEARCH PORTFOLIO WITH 26 NEW, INNOVATIVE, AND POTENTIALLY IMPACTFUL RESEARCH PROJECTS. LAUNCHED CRITICAL EFFORTS TO FURTHER MAXIMIZE LRA'S RESEARCH INVESTMENTS INCLUDING A COLLABORATIVE PROGRAM ACROSS THE GTSA GRANTEES AND A DLR TRAINING PROGRAM. FURTHER OPTIMIZED THE LUPUS INSIGHT PRIZE PROGRAM TO STIMULATE THE SUBMISSION OF A ROBUST POOL OF COMPELLING NOMINATIONS. ESTABLISHED THE LUPUS ACCELERATING BREAKTHROUGHS CONSORTIUM (LUPUS ABC)-- THE FIRST PUBLIC PRIVATE PARTNERSHIP WITH THE FDA DEDICATED TO ACCELERATING THE DEVELOPMENT OF SAFER AND MORE EFFECTIVE THERAPEUTICS FOR LUPUS. SINCE ITS CREATION, LUPUS ABC HAS LAUNCHED FOUR PROJECTS WITH THE PARTICIPATION OF KEY STAKEHOLDERS--INCLUDING REPRESENTATIVES FROM ACADEMIA, INDUSTRY, PROFESSIONAL SOCIETIES, GOVERNMENTAL AGENCIES, PATIENT ADVOCACY GROUPS, AND INDIVIDUALS WITH LUPUS. CONTINUED TO ESTABLISH KEY INFRASTRUCTURE COMPONENTS OF THE LUPUS NEXUS, THE LRA'S REGISTRY, BIOREPOSITORY AND RESEARCH INFORMATION EXCHANGE PLATFORM. THE LUPUS NEXUS WILL BE A SOURCE OF HIGHLY CURATED DATA AND BIOSPECIMENS TO CATALYZE GLOBAL COLLABORATION, RESEARCH INNOVATION, AND PRECISION MEDICINE APPROACHES TO ACCELERATE LUPUS RESEARCH AND DRUG DEVELOPMENT. MAINTAINED A STRONG ENGAGEMENT WITH INDUSTRY THROUGH THE LUPUS INDUSTRY COUNCIL (LIC). LIC MEMBERS ARE INVOLVED IN VARIOUS LRA INITIATIVES INCLUDING THE LUPUS ABC, LUPUS NEXUS, AND LIC WORKING GROUPS. DURING 2023, THE (LRA) CONVENED AN ANNUAL SCIENTIFIC CONFERENCE, THE FORUM FOR DISCOVERY, TO PROVIDE AN OPPORTUNITY FOR LRA-FUNDED SCIENTISTS TO SHARE THEIR RESEARCH DISCOVERIES MADE POSSIBLE BY LRA'S SUPPORT ADDITIONAL GOALS OF THE MEETING INCLUDE PROMOTING COLLABORATIONS, STIMULATING NEW IDEAS AND PROJECTS, AND ENABLING INTERACTIONS BETWEEN INVESTIGATORS FROM ACADEMIA AND INDUSTRY. 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; 2023 FORUM FOR DISCOVERY (ANNUAL INVESTIGATOR'S MEETING); GRANT-SPECIFIC STUDY SECTIONS WHERE INVITED RESEARCHERS DISCUSSED AND REVIEWED APPLICATIONS SUBMITTED TO THE LRA. LUPUS THERAPEUTICS, LLC:THE LRA FOUNDED LUPUS THERAPEUTICS, LLC (LT) AS THE CLINICAL RESEARCH AFFILIATE OF THE LRA IN 2018 . WITH THIS ADDITION, THE LRA IS THE ONLY ORGANIZATION LEADING LUPUS RESEARCH ACROSS THE CONTINUUM FROM ACCELERATING BASIC DISCOVERIES IN THE LAB THROUGH CLINICAL EVALUATION OF NEW THERAPIES. MANY OF THE BASIC RESEARCH BREAKTHROUGHS SUPPORTED BY THE LRA HAVE HELPED UNRAVEL THE COMPLEXITIES OF LUPUS AND ENABLED THE DEVELOPMENT OF POTENTIAL TREATMENTS AND DIAGNOSTICS NOW IN CLINICAL STUDIES. LT IS ACTIVELY SUPPORTING SEVERAL CLINICAL STUDIES FOR NEW THERAPIES THROUGH THE LUPUS CLINICAL INVESTIGATORS NETWORK (LUCIN). LT OVERSEES LUCIN, A NORTH AMERICA-BASED LUPUS CLINICAL TRIALS NETWORK OF 50+ PREMIER RESEARCH MEDICAL CENTERS. THE LRA PROVIDED OVER $2.6 MILLION IN 1-YEAR GRANTS IN 2023 TO CONTINUE FUNDING TOP ACADEMIC CENTERS TO FOSTER ROBUST, HIGH QUALITY CLINICAL TRIAL CONDUCT WITH PARTICIPATION ACROSS NORTH AMERICA.LT ALSO OFFERS EXPERTISE COMBINED WITH THAT OF 200+ LUCIN PROVIDERS AND THE LRA THROUGH COMMUNITY-BASED AND INTERNAL PROGRAMS TO ENSURE EQUITABLE ACCESS, PARTICIPATION AND REPRESENTATION OF THE DIVERSE LUPUS COMMUNITY. 783882 123168 PUBLIC POLICY:THE LUPUS RESEARCH ALLIANCE'S ADVOCACY EFFORTS FOCUS ON URGING CONGRESS TO PROVIDE THE FUNDS NEEDED TO SUPPORT RESEARCH INTO LUPUS THAT CAN LEAD TO BETTER TREATMENTS AND, ULTIMATELY, A CURE. EFFORTS ALSO INCLUDE WAYS TO ENSURE INCREASED DIVERSITY IN CLINICAL TRIALS AND REDUCING BARRIERS TO ENROLLMENT FOR ALL WHO WANT TO PARTICIPATE. THE TOP GOALS OF THE LUPUS RESEARCH ALLIANCE PUBLIC POLICY PROGRAM FOCUS MAINLY ON FUNDING FOR LUPUS RESEARCH THAT WILL LEAD TO BETTER TREATMENTS AND ELIMINATE RACIAL DISPARITIES IN HEALTHCARE. GOALS INCLUDE: INCREASING FEDERAL FUNDING FOR LUPUS RESEARCH BY RAISING 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); SUPPORTING THE LRA'S PARTNERSHIP WITH THE FDA, THE LUPUS ACCELERATING BREAKTHROUGHS CONSORTIUM (LUPUS ABC); AND ENSURING 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. GIVEN THE HIGH DEMAND FOR NEW RESEARCH ALONGSIDE THE RISING NUMBERS OF WOMEN TREATED AT MILITARY HEALTH FACILITIES AS WELL AS THE LINK BETWEEN POST-TRAUMATIC STRESS DISORDER (PTSD) AND THE DEVELOPMENT OF AN AUTOIMMUNEDISEASE, THE LUPUS RESEARCH ALLIANCE REQUESTS THAT CONGRESS INCREASE ITS INVESTMENT AND PROVIDE $15 MILLION FOR THE LUPUS RESEARCH PROGRAM IN THE CONGRESSIONALLY DIRECTED MEDICAL RESEARCH PROGRAMS OPERATED UNDER THE DEFENSE HEALTH PROGRAM IN THE DEFENSE APPROPRIATIONS BILL. THIS ADDITIONAL INVESTMENT IS CRITICAL FOR DISCOVERIES THAT CAN MAKE A DIFFERENCE IN PATIENTS' ABILITY TO BE THE BEST VERSION OF THEMSELVES. THE LRA LED THE PUSH FOR THE CREATION OF THE LUPUS RESEARCH PROGRAM, WHICH WAS FIRST FUNDED WITH $5 MILLION IN 2017 AND INCREASED TO $10 MILLION PER YEAR IN 2020. LRA LEADERSHIP, OUR ADVOCATES, AND ALLIED MEMBERS OF CONGRESS ARE WORKING TO ADVANCE RESEARCH PRIORITIES LIKE THIS THAT ARE CRITICAL TO THE LUPUS RESEARCH ALLIANCE AND ALL PEOPLE IMPACTED BY LUPUS.IN 2023 THE LRA INTRODUCED THE LUPUS ACCELERATING BREAKTHROUGHS CONSORTIUM (LUPUS ABC) AS THE FIRST PUBLIC-PRIVATE PARTNERSHIP WITH THE U.S. FOOD AND DRUG ADMINISTRATION (FDA) THAT FOCUSES SPECIFICALLY ON ADVANCING THE DEVELOPMENT OF SAFER AND MORE EFFECTIVE TREATMENTS URGENTLY NEEDED FOR PEOPLE WITH LUPUS. IN COLLABORATION WITH KEY STAKEHOLDERS, LUPUS ABC IS BRINGING TOGETHER PEOPLE WITH LUPUS, FEDERAL AGENCIES, MEDICAL SOCIETIES, ADVOCACY GROUPS, INDUSTRY, ACADEMIC CLINICAL RESEARCHERS, AND SCIENTISTS, WITH THE FDA, TO OVERCOME THE SCIENTIFIC HURDLES IN DRUG DEVELOPMENT THAT ARE BEYOND THE CAPACITY OF ANY SINGLE ENTITY.THE LRA ALSO WORKED TO INCLUDE LANGUAGE THAT ACCOMPANIES THE AGRICULTURE, RURAL DEVELOPMENT, FOOD AND DRUG ADMINISTRATION (FDA) BILL TO SUPPORT ACCELERATING LUPUS THERAPIES. BOTH THE HOUSE AND SENATE APPROPRIATIONS COMMITTEES HAVE INCLUDED IMPORTANT LANGUAGE RELEVANT TO LUPUS SIMILAR TO WHAT LRA REQUESTED. THE FOLLOWING LANGUAGE WAS INCLUDED IN THE SENATE REPORT:THE COMMITTEE IS AWARE OF BARRIERS THAT HAVE LONG AFFECTED THE DEVELOPMENT OF THERAPEUTICS FOR LUPUS, A DISEASE THAT PRIMARILY TARGETS WOMEN. A CHRONIC AND COMPLEX AUTOIMMUNE DISEASE, LUPUS CAN AFFECT THE JOINTS, SKIN, BRAIN, LUNGS, KIDNEYS, AND BLOOD VESSELS, CAUSING WIDESPREAD INFLAMMATION AND TISSUE DAMAGE IN THE AFFECTED ORGAN. THE COMMITTEE IS PLEASED THAT FDA PARTICIPATED IN AN EXTERNALLY-LED PATIENT-FOCUSED DRUG DEVELOPMENT MEETING WITH THE LUPUS COMMUNITY AND IDENTIFIED SOME OF THESE BARRIERS AND THAT POTENTIAL TREATMENTS ARE NOW IN CLINICAL TRIALS. THE COMMITTEE URGES FDA TO EXPEDITE ITS ONGOING WORK WITH THE LUPUS COMMUNITY TO DEVELOP SOLUTIONS TO IDENTIFIED BARRIERS THAT WILL ACCELERATE DEVELOPMENT OF NEW THERAPIES.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. EACH SPRING, LUPUS RESEARCH ADVOCATES MEET WITH MEMBERS OF CONGRESS AND THEIR STAFF TO DESCRIBE THEIR PERSONAL LUPUS JOURNEY AND HOW THE DISEASE HAS AFFECTED THEIR LIFE, AND TO REQUEST SPECIFIC POLICIES THAT WILL MOVE LUPUS RESEARCH FORWARD. 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. 28218305 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 1 116 0 1 73 1 0 0 0 0 0 1 1 0 0 0 0 0 0 X 25 25 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 ANNA FISCH SECRETARY 1.00 X X 0 0 0 JAMES ANDREW DIRECTOR 1.00 X 0 0 0 BISHOP RUDY V CARLTON DIRECTOR 1.00 X 0 0 0 WILLIE COLON DIRECTOR 1.00 X 0 0 0 JENNIFER DAKIN 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 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LUPUS NEXUS DIRECTOR 40.00 X 222993 0 45107 DOREY NEILINGER SENIOR DIRECTOR OF PHILANT 40.00 X 179452 0 40818 DIANE GROSS NATIONAL DIRECTOR OF ADVOC 40.00 X 194794 0 39795 HOANG NGUYEN DIRECTOR OF SCIENTIFIC PARTNERSHIPS 40.00 X 163397 0 37605 JONATHAN MARKS DIRECTOR OF CORPORATE DEVE 40.00 X 153067 0 51584 KENNETH M FABER FORMER CEO & PRESIDENT 40.00 X 400000 0 0 3256448 0 585934 21 1 1 0 EG&A CIRP DBA MCS HEALTHCARE PR 110 ALLEN ROAD SUITE 300 BASKING RIDGE NJ 07921 PUBLIC RELATIONS CONSULTANT 386649 CONVERGENCY LLC 9117 FRIARS ROAS BETHESDA MD 20817 LUPUS ABC/FDA CONSULTANT 300000 KDH RESEARCH AND COMMUNICATION INC 145 15TH STREET NE SUITE 831 ATLANTA GA 30309 CHANGE CONSULTANT 197700 BERNUTH & WILLIAMSON 13 CAMPBELTON CIRCLE PRINCETON NJ 08540 STRATEGIC PLANNING CONSULTANT 176750 SCHANER & LUBITZ PLLC 4550 MONTGOMERY AVE SUITE 1100 N BETHESDA MD 20814 LIFE SCIENCES ATTORNEY 128689 10 4303717 334880 36400064 109513 41038661 LUCIN CONSULTING REVENUE 900099 1197560 1197560 1197560 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253159 253159 50861497 35152092 0 35152092 253159 253159 35405251 PART V, LINE 4: BOARD DESIGNATED (QUASI) ENDOWMENT FUND INCOME TO BE USED FOR SUPPORTING OPERATIONS AND THE RESEARCH PROGRAM. PRINCIPAL TO REMAIN INTACT UNLESS HIGH PRIORITY LUPUS RESEARCH PROJECTS NEED TO BE FUNDED THAT COULD NOT BE FUNDED OTHERWISE. 1 NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES 0 0 GRANTS TO RECIPIENTS 682408 EAST ASIA AND THE PACIFIC 0 0 GRANTS TO RECIPIENTS 181540 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM 0 0 GRANTS TO RECIPIENTS 1025511 SOUTH AMERICA 0 0 GRANTS TO RECIPIENTS 10000 0 0 0 0 0 0 1899459 0 1899459 NORTH AMERICA LUPUS RESEARCH 338314 ACH 0 NORTH AMERICA LUPUS RESEARCH 145695 ACH 0 NORTH AMERICA LUPUS RESEARCH 10000 WIRE 0 NORTH AMERICA LUPUS RESEARCH 182732 CHECK 0 SOUTH AMERICA LUPUS RESEARCH 10000 WIRE 0 EAST ASIA AND THE PACIFIC LUPUS RESEARCH 181540 ACH 0 EUROPE (INCLUDING ICELAND AND GREENLAND) LUPUS RESEARCH 178515 WIRE 0 EUROPE (INCLUDING ICELAND AND GREENLAND) LUPUS RESEARCH 8523 WIRE 0 EUROPE (INCLUDING ICELAND AND GREENLAND) LUPUS RESEARCH 100000 WIRE 0 EUROPE (INCLUDING ICELAND AND GREENLAND) LUPUS RESEARCH 10000 WIRE 0 EUROPE (INCLUDING ICELAND AND GREENLAND) LUPUS RESEARCH 291389 WIRE 0 EUROPE (INCLUDING ICELAND AND GREENLAND) LUPUS RESEARCH 291389 WIRE 0 EUROPE (INCLUDING ICELAND AND GREENLAND) LUPUS RESEARCH 145695 WIRE 0 6 6 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. X X X X X 1 DS CONSULTING GROUP 845 THIRD AVENUE 6TH FLOOR NEW YORK NY 10022 SPECIAL EVENT CONSULTANT NY GALA 1 2059519 72500 2059519 2059519 72500 2059519 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 3675150 3209636 465514 68725 335825 36850 24114 WALK-A-THONS 1132852 1094081 38771 6487 4360 13481 14443 4808002 4303717 504285 6487 73085 349306 36850 38557 504285 0 SCHEDULE G, PART I, LINE 2B, COLUMN (V) DS CONSULTING PLANNED AND MANAGED LRA'S GALA EVENT. 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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 364000 0 70000 0 1807 0 33000 0 53961 0 522768 0 0 0 STACIE BELL PHD EXECUTIVE VP, LUPUS THERAPEUTICS 244792 0 30000 0 1613 0 10733 0 26120 0 313258 0 0 0 DEBRA ROSE VP AND CHIEF FINANCE OFFIC 227115 0 20000 0 2569 0 29582 0 25530 0 304796 0 0 0 TEODORA STAEVA VP AND CHIEF SCIENTIFIC OF 277824 0 50000 0 2066 0 32782 0 45625 0 408297 0 0 0 ANDREA O'NEILL VP AND CHIEF DEVELOPMENT O 235700 0 35000 0 1933 0 29777 0 17004 0 319414 0 0 0 PENELOPE MITCHELL VP OF COMMUNICATIONS 181600 0 10000 0 2762 0 14736 0 25767 0 234865 0 0 0 LUKE EASLEY VP OF HR & ADMINISTRATION 158333 0 25000 0 631 0 7017 0 19391 0 210372 0 0 0 DEVON KELLY LUPUS NEXUS DIRECTOR 208000 0 12480 0 2513 0 19162 0 25945 0 268100 0 0 0 DOREY NEILINGER SENIOR DIRECTOR OF PHILANT 176000 0 0 0 3452 0 19360 0 21458 0 220270 0 0 0 DIANE GROSS NATIONAL DIRECTOR OF ADVOC 151153 0 0 0 43641 0 6046 0 33749 0 234589 0 0 0 HOANG NGUYEN DIRECTOR OF SCIENTIFIC PARTNERSHIPS 150000 0 12000 0 1397 0 12960 0 24645 0 201002 0 0 0 JONATHAN MARKS DIRECTOR OF CORPORATE DEVE 152100 0 0 0 967 0 16731 0 34853 0 204651 0 0 0 KENNETH M FABER FORMER CEO & PRESIDENT 400000 0 0 0 0 0 0 0 0 0 400000 0 0 0 X 7 109513 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 1A EXECUTIVE COMMITTEE IS COMPRISED OF THE BOARD CO-CHAIRS, PRESIDENT, BOARD SECRETARY AND ONE ADDITIONAL VOTING BOARD MEMBER. THE EXECUTIVE COMMITTEE APPROVES DETAILS OF PROGRAMS ALREADY APPROVED BY THE BOARD, STAFF COMPENSATION AND LARGE CONTRACT NEGOTIATIONS. 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 EXECUTIVE 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 2023, THE COMMITTEE REVIEWED AND APPROVED BASE SALARIES, 2024 COMPENSATION PLAN INCLUDING THE 2023 YEAR-END BONUS POOL FOR ALL STAFF AND THE 403B NON-ELECTIVE EMPLOYER CONTRIBUTION TO ALL ELIGIBLE 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: CANCELLED GRANTS 345,761. 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 2333551 884491 YES