Form 990 for tax year 2022

Totals

Total revenue

$22,699,491

Total expenses

$32,373,925

Contributions and grants received

$18,375,553

Grants paid

$17,377,279

Program service revenue

$1,232,995

Investment income

$2,452,805

Other revenue

$638,138

Total assets, end of year

$98,907,292

Total liabilities, end of year

$35,375,707

Net assets or fund balances, end of year

$63,531,585

Program services expenses (Part IX)

$26,275,886

Management and general expenses

$3,023,181

Fundraising expenses

$3,074,858

Program service expenses (Part III)

$26,275,886

Program services were 81.2% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

Line items

Every line the filer filed in Parts VIII, IX and X, as filed and in filed order. Blank columns are left out, and the lines are not forced to add up to the totals above.

Mission and programs · 2022

• Withheld by Nonprofiteer: this text may name a private individual.

  Expenses $18,280,972 · Grants $17,187,962

• 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

  Expenses $7,351,943 · Grants $107,085 · Revenue $1,232,995

• 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.

  Expenses $642,971 · Grants $82,232

As filed on the 2022 return. The filer continues this part on Schedule O, which is not shown here. A text marked withheld matched a screen for wording that may name a private individual, such as an honorific or "in memory of". Most of what it withholds names no one; it is withheld so that what does is never shown.

Listed in Part VII

Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those. A Schedule J breakdown is as filed: base pay, bonus, other, deferred compensation and nontaxable benefits from this organization, with any from related organizations beside each, and the filer's own total. It is shown with the Part VII listing of the same name on the same return. The form gives no key between the two, so that pairing is ours, and is marked matched by us.

Schedule J

Part I's answers as filed. A line not listed was left unanswered; on lines 1a and 3 that means the box was not checked.

Grants on this return

• THE FEINSTEIN INSTITUTE FOR MEDICAL RESEARCH

  $3,390,307

  LUPUS RESEARCH

• YALE UNIVERSITY

  $1,029,380

  LUPUS RESEARCH

• ST JUDE CHILDREN'S HOSPITAL

  $929,380

  LUPUS RESEARCH

• JOHN'S HOPKINS UNIVERSITY

  $582,761

  LUPUS RESEARCH

• UNIVERSITY OF MASSACHUSETTS MEDICAL SCHOOL

  $580,139

  LUPUS RESEARCH

• UNIVERSITY OF MICHIGAN

  $571,547

  LUPUS RESEARCH

• UNIVERSITY OF ROCHESTER

  $571,547

  LUPUS RESEARCH

• NEW YORK UNIVERSITY SCHOOL OF MEDICINE

  $474,748

  LUPUS RESEARCH

• MASSACHUSETTS GENERAL HOSPITAL

  $416,389

  LUPUS RESEARCH

• UNIVERSITY OF FLORIDA

  $296,844

  LUPUS RESEARCH

The 10 largest by cash amount. The API serves every itemized grant.

Taxable family on this return

Schedule R Parts I, III and IV, as filed. These record ownership and control, not shared board members or money moved.

Provenance

Return type

form_990

Tax year

2022

Filed

15 September 2023

IRS schema version

2022v5.0

Source object

202322589349302062

Check it against the return as filed: the GivingTuesday Data Lake hosts a public copy of the original XML.

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