LUPUS FOUNDATION OF AMERICA INC

As filed

Subsection

03

NTEE code

G89Z

Classification

1000

Street

2121 K ST NW STE 200

These codes are the IRS's own and are shown exactly as filed. What each one means is in the Business Master File documentation (opens in a new tab).

Other organizations at this address

1 other organization in the IRS Business Master File lists the same street address. matched by us

This address is a suite or unit (STE 200). Organizations that share one are often clients of the same office-services firm, accountant or registered agent rather than related to each other.

We match the street line and ZIP code as the IRS gives them, ignoring case and outer spaces and nothing else, so "AVE" and "AVENUE" count as different streets and this list can miss some. A shared address can mean related organizations or a shared office, but it can also be a registered agent, a mail drop or a service provider holding mail for unrelated clients. It is not, by itself, evidence that two organizations are connected.

• LUPUS AMERICA COMMUNITIES

  EIN 90-0870868

Mission and programs · 2024

• PUBLIC INFORMATION AND EDUCATION:THE FOUNDATION STRENGTHENED ITS ROLE AS THE LEADING SOURCE OF LUPUS INFORMATION. THE LUPUS.ORG WEBSITE REACHED MORE THAN 9.8 MILLION ANNUAL VIEWS, SUPPORTED BY HOMEPAGE OPTIMIZATION IMPROVEMENTS AND THE INTEGRATION OF THE DIGITAL KNOW LUPUS QUIZ TO ENHANCE ENGAGEMENT DURING LUPUS AWARENESS MONTH (LAM) AND YEAR-ROUND. SOCIAL MEDIA FOLLOWING GREW TO MORE THAN 450,000 COMBINED FOLLOWERS ACROSS PLATFORMS, SUPPORTED BY TARGETED CAMPAIGNS, INCLUDING "SPOTLIGHT SERIES" INITIATIVES HIGHLIGHTING DISPARITIES AND THE UNIQUE IMPACT OF LUPUS ACROSS POPULATIONS.LUPUS AWARENESS MONTH CONTINUED UNDER THE THEME MAKE LUPUS VISIBLE, FEATURING EDUCATIONAL RESOURCES, PERSONAL STORIES, VIDEOS, ADVOCACY EVENTS, AND PROMOTIONAL EFFORTS TIED TO MAJOR FUNDRAISING INITIATIVES AND THE NATIONAL LUPUS ADVOCACY SUMMIT. AN OMNIBUS AWARENESS SURVEY SHOWED 53% OF U.S. ADULTS STILL REPORTED LIMITED OR NO KNOWLEDGE OF THE DISEASE, UNDERSCORING THE NEED FOR CONTINUED EDUCATION.GLOBALLY, THE FOUNDATION LED WORLD LUPUS DAY ON MAY 10 THROUGH ITS WORLD LUPUS FEDERATION (WLF), EXECUTING AN INTERNATIONAL MAKE LUPUS VISIBLE CAMPAIGN. IN 2025, THE FEDERATION MARKED ITS 10TH ANNIVERSARY WITH A COMPREHENSIVE COMMUNICATIONS CAMPAIGN, NEW LOGO, AND REDESIGNED WEBSITE TO CELEBRATE A DECADE OF IMPACT. THE WORLD LUPUS FEDERATION, NOW COMPRISING APPROXIMATELY 250 ORGANIZATIONS ACROSS 75 COUNTRIES, COMPLETED KEY INITIATIVES IDENTIFIED IN ITS NEEDS ASSESSMENT, INCLUDING DEVELOPMENT OF A SPANISH-LANGUAGE "UNDERSTANDING LUPUS" FACT SHEET FOR INTERNATIONAL PARTNERS AND A GLOBAL WEBINAR ON CREATING PEER-LED SUPPORT GROUPS.

  Expenses $4,974,865 · Grants $5,000 · Revenue $102,775

• PATIENT EDUCATION AND SUPPORT:THE FOUNDATION'S NATIONAL RESOURCE CENTER ON LUPUS (NRCL) REMAINED CENTRAL TO PATIENT EDUCATION, REACHING NEARLY 2 MILLION USERS AND GENERATING 3.3 MILLION SESSIONS IN 2025 WITH A 65% ENGAGEMENT RATE. THE FOUNDATION UPDATED OR CREATED NEW 24 MEDICALLY-REVIEWED ENGLISH RESOURCES AND 20 SPANISH RESOURCES, WITH 88% OF MATERIALS NOW AVAILABLE BILINGUALLY. NEW BLOG CONTENT ADDRESSED MENTAL HEALTH, LUPUS NEPHRITIS, AND LIFESTYLE STRATEGIES.THE FOUNDATION HOSTED 29 LUPUS & YOU EMPOWERMENT CONFERENCES, ATTRACTING MORE THAN 1,500 IN-PERSON ATTENDEES, 41% OF WHOM WERE NEW TO THE ORGANIZATION. CONFERENCES PROVIDED EDUCATION, SUPPORT, AND OPPORTUNITIES FOR RESEARCH ENGAGEMENT. ADDITIONALLY, THE LUPUS & YOU: ANSWERS, ADVOCACY, ACTION WEBINAR SERIES REACHED NEARLY 7,900 INDIVIDUALS THROUGH LIVE AND RECORDED SESSIONS. SELF-MANAGEMENT EDUCATION CONTINUED TO GROW THROUGH THE SELF (STRATEGIES TO EMBRACE LIVING WITH LUPUS FEARLESSLY) PROGRAM, NOW DELIVERED VIA MOBILE APP. IN 2025, MORE THAN 5,200 INDIVIDUALS REGISTERED FOR THE APP, WITH 1,200 MONTHLY ACTIVE USERS. COMPLEMENTARY TOOLS INCLUDED A PEER SELF-MANAGEMENT PILOT PROGRAM, PRINTED GUIDES, AND A HEALTH CARE PROFESSIONAL REFERRAL TOOLKIT.THE TAKE CHARGE/TOME CONTROL EMAIL SERIES GAINED 842 NEW SUBSCRIBERS IN FY2025, REACHING MORE THAN 17,000 SUBSCRIBERS OVERALL, WITH ABOUT 20% SELECTING SPANISH-LANGUAGE CONTENT. THE EXPERT SERIES PODCAST ADDED NEW EPISODES ADDRESSING FIBROMYALGIA, MENOPAUSE, AND LUPUS IN MEN.COMMUNITY-LEVEL OUTREACH INCLUDED PARTNERSHIPS WITH 20 LIBRARIES, LOCAL EVENTS REACHING NEARLY 2,000 ATTENDEES, AND THE BE FIERCE. TAKE CONTROL. AWARENESS CAMPAIGN, WHICH GENERATED 16.9 MILLION AD VIEWS AND MORE THAN 56,000 WEBSITE VISITS. HEALTH EDUCATION SPECIALISTS RESPONDED TO 2,887 INQUIRIES FROM INDIVIDUALS ACROSS 46 STATES, THREE U.S. TERRITORIES, AND MORE THAN 65 COUNTRIES. TRANSLATION SERVICES EXPANDED CULTURALLY APPROPRIATE MATERIALS AND PROGRAM ACCESS.THE FOUNDATION UPDATED 42 STATE AND LOCAL 211 SYSTEMS WITH LUPUS RESOURCES AND LAUNCHED A CONTINUING NURSING EDUCATION COURSE ACCESSED BY MORE THAN 100 NURSES SHORTLY AFTER RELEASE. THE COMMUNITY HEALTH WORKER RESOURCE HUB EXPANDED WITH UPDATED MODULES AND A SPANISH-LANGUAGE PROMOTORES DE SALUD HUB. OUTREACH EFFORTS REACHED HUNDREDS OF FRONTLINE HEALTH WORKERS, AND SPECIALIZED WORKSHOPS SUPPORTED CULTURALLY RELEVANT EDUCATION IN NATIVE AMERICAN COMMUNITIES.ADDITIONAL PROFESSIONAL ENGAGEMENT INCLUDED DEVELOPMENT OF PROVIDER REFERRAL TOOLKITS, UPDATED CLINICIAN-FOCUSED CONTENT, EDUCATIONAL VIDEOS, CONFERENCE PRESENTATIONS, AND COLLABORATIVE PARTNERSHIPS TO STRENGTHEN REFERRAL PATHWAYS AND IMPROVE LUPUS CARE DELIVERY.

  Expenses $4,474,306

• PROFESSIONAL RELATIONS AND EDUCATION:THE FOUNDATION'S ADVOCACY EFFORTS DELIVERED HISTORIC FUNDING GAINS. DURING THE NATIONAL LUPUS ADVOCACY SUMMIT, MORE THAN 350 ADVOCATES CONDUCTED NEARLY 200 MEETINGS ON CAPITOL HILL. THESE EFFORTS CONTRIBUTED TO SECURING $27 MILLION IN LUPUS-SPECIFIC FEDERAL FUNDING FOR FY2026 THE HIGHEST EVER APPROVED IN A SINGLE YEAR. FUNDING ALLOCATIONS INCLUDED:- $14 MILLION FOR THE CDC'S NATIONAL LUPUS PATIENT REGISTRY- $10 MILLION FOR THE DEPARTMENT OF DEFENSE LUPUS RESEARCH PROGRAM- $3 MILLION FOR THE OFFICE OF MINORITY HEALTH'S LUPUS TRAINING AND OUTREACH INITIATIVES- $49.7 BILLION OVERALL FOR THE NATIONAL INSTITUTES OF HEALTH, THE WORLD'S LARGEST PUBLIC FUNDER OF LUPUS RESEARCHTHE FOUNDATION ALSO ADVANCED PATIENT-CENTERED DRUG DEVELOPMENT BY CONTRIBUTING TO FDA PATIENT FOCUSED DRUG DEVELOPMENT GUIDANCE, AND IT ENGAGED IN FEDERAL AND STATE ADVOCACY TO ELIMINATE RESTRICTIVE INSURANCE PRACTICES SUCH AS STEP THERAPY AND CO-PAY ACCUMULATORS. THE FOUNDATION ALSO MOBILIZED A NETWORK OF MORE THAN 40,000 GRASSROOTS ADVOCATES NATIONWIDE.THROUGH LEADERSHIP OF THE MAPRX COALITION, REPRESENTING MORE THAN 60 NATIONAL PATIENT ORGANIZATIONS, THE FOUNDATION WORKED TO PROTECT MEDICARE PART D BENEFITS FOR 44 MILLION AMERICANS. EFFORTS INCLUDED CONGRESSIONAL BRIEFINGS AND ENGAGEMENT WITH THE CENTERS FOR MEDICARE AND MEDICAID SERVICES REGARDING IMPLEMENTATION OF THE MEDICARE PRESCRIPTION PAYMENT PLAN.

  Expenses $2,265,504 · Grants $408,638 · Revenue $21,285

• NETWORK SUPPORT AND SERVICES:THE FOUNDATION'S NATIONAL NETWORK OF CHAPTERS, AMBASSADORS, AND SUPPORT GROUPS CONTINUED TO EXPAND. MORE THAN 200 TRAINED NATIONAL AMBASSADORS PROVIDED PEER EDUCATION AND OUTREACH. THE ORGANIZATION SUPPORTED MORE THAN 45 NATIONAL SUPPORT GROUPS WITH EXPANDED OFFERINGS FOR MEN, YOUTH UNDER 25, HISPANIC/LATINO COMMUNITIES, ASIAN COMMUNITIES, CAREGIVERS, AND BLACK/AFRICAN AMERICAN WOMEN. BOTH IN-PERSON AND VIRTUAL FORMATS INCREASED ACCESSIBILITY. SIX NEW NATIONAL AND EIGHT NEW REGIONAL SUPPORT GROUPS LAUNCHED, AND 142 FACILITATORS COMPLETED TRAINING, WITH 94% REPORTING READINESS TO LEAD. MORE THAN 90% OF PARTICIPANTS REPORTED INCREASED SUPPORT, IMPROVED KNOWLEDGE, AND REDUCED ISOLATION. THE LUPUSCONNECT ONLINE COMMUNITY GREW TO 27,416 MEMBERS.COMMUNITY FUNDRAISING AND ENGAGEMENT REMAINED STRONG. THE FOUNDATION HELD 29 WALK TO END LUPUS NOW EVENTS NATIONWIDE AND A VIRTUAL CELEBRATION FOR BROADER PARTICIPATION. THE VIRTUAL 6 CHALLENGE PROVIDED FLEXIBLE ENGAGEMENT OPPORTUNITIES. GAME ON! TO END LUPUS, A THREE-DAY LIVESTREAM FUNDRAISING EVENT, ENGAGED MORE THAN 188 CONTENT CREATORS AND SURPASSED THE $1 MILLION MILESTONE IN CUMULATIVE FUNDRAISING.

  Expenses $408,272 · Grants $10,000 · Revenue $92,126

• RESEARCH:RECENT THERAPEUTIC ADVANCES HAVE SIGNIFICANTLY IMPROVED OUTCOMES FOR PEOPLE WITH LUPUS, WITH APPROXIMATELY 97 PERCENT OF PATIENTS NOW LIVING AT LEAST FIVE YEARS AFTER DIAGNOSIS. DESPITE THIS PROGRESS, CONTINUED RESEARCH IS ESSENTIAL TO ENHANCE QUALITY OF LIFE AND DEEPEN UNDERSTANDING OF THE DISEASE. THE LUPUS FOUNDATION OF AMERICA ANCHORS ITS RESEARCH EFFORTS IN THREE INTERCONNECTED PRIORITIES: ADVANCING CLINICAL CARE, EXPANDING EQUITABLE ACCESS TO CARE, AND ACCELERATING DRUG DEVELOPMENT. A CORNERSTONE INITIATIVE IS THE ADDRESSING LUPUS PILLARS FOR HEALTH ADVANCEMENT (ALPHA) PROJECT, A GLOBAL, MULTI-PHASE EFFORT TO IDENTIFY URGENT UNMET NEEDS IN LUPUS CARE. IN 2025, ALPHA EXPANDED ITS FOCUS TO PATIENT-PROVIDER COMMUNICATION AND BARRIERS TO HIGH-QUALITY CARE. THE TEAM CONDUCTED A REVIEW OF MORE THAN 2,300 ARTICLES, DEVELOPED A DECISION-MAKING FRAMEWORK, AND HELD FOCUS GROUPS WITH INDIVIDUALS LIVING WITH LUPUS TO BETTER UNDERSTAND TREATMENT CHALLENGES. THESE EFFORTS LED TO THE CREATION OF A PROTOTYPE SHARED DECISION-MAKING TOOLAVAILABLE IN PAPER AND MOBILE FORMATSTO HELP PATIENTS BETTER UNDERSTAND TREATMENT OPTIONS AND COLLABORATE EFFECTIVELY WITH PROVIDERS.A ROADMAP IDENTIFYING U.S. "RHEUMATOLOGY DESERTS" WAS DEVELOPED TO IMPROVE ACCESS TO TIMELY DIAGNOSIS AND CARE. ADDITIONALLY, A CONSENSUS-BASED MANUSCRIPT OUTLINING SOLUTIONS TO RACIAL AND ETHNIC DISPARITIES WAS PUBLISHED IN ARTHRITIS CARE AND RESEARCH AND FEATURED IN HEALIO MAGAZINE.THE FOUNDATION ALSO FUNDS FELLOWSHIPS AND EARLY-CAREER DEVELOPMENT GRANTS TO ENSURE TRAINING SUPPORT FOR LUPUS RESEARCHERS. IT PARTNERS WITH LUPUS CANADA TO ADMINISTER THE CATALYST GRANT AND ACTIVELY PURSUES FEDERAL, STATE, AND INDUSTRY FUNDING TO STRENGTHEN LUPUS RESEARCH PIPELINES. RESEARCH INVESTMENTS INCLUDE SUPPORT FOR A MULTI-YEAR STUDY OF MESENCHYMAL STROMAL CELLS AS A POTENTIAL LUPUS TREATMENT, LED BY THE MEDICAL UNIVERSITY OF SOUTH CAROLINA IN PARTNERSHIP WITH THE NATIONAL INSTITUTE FOR ALLERGY AND INFECTIOUS DISEASES. ALL PARTICIPANTS HAVE COMPLETED THE STUDY, AND RESULTS ARE EXPECTED IN 2026. ADDITIONALLY, THE LFA-FUNDED CARE LUPUS STUDY, PART OF THE PREDICT AND PREVENT LUPUS PROGRAM, HAS MADE SIGNIFICANT PROGRESS IN IDENTIFYING FIRST-DEGREE RELATIVES AT RISK OF DEVELOPING LUPUS.THE FOUNDATION ALSO SUPPORTS THE SYSTEMIC LUPUS ERYTHEMATOSUS COLLABORATING CLINICS (SLICC) IN UPDATING THE FDA-ACCEPTED SLICC DAMAGE INDEX, PARTICIPATES IN LUPUS ABC TO IMPROVE CLINICAL TRIAL OUTCOME MEASURES, AND PARTNERS IN THE TREATMENT RESPONSE MEASURE FOR SLE (TRM-SLE) PROJECT TO ELEVATE THE PATIENT VOICE.THE RAY REGISTRY CONTINUES TO EXPAND AS A VITAL PATIENT DATA PLATFORM. SINCE OCTOBER 2024, 473 NEW PARTICIPANTS ENROLLED, BRINGING TOTAL ENROLLMENT TO 7,163. RECRUITMENT EFFORTS HAVE INCREASED REPRESENTATION AMONG BLACK/AFRICAN AMERICAN PARTICIPANTS AND OTHER RACIAL AND ETHNIC GROUPS. MOST NEW ENROLLEES HAVE SYSTEMIC LUPUS ERYTHEMATOSUS (SLE), WITH A MEDIAN AGE OF 45. IN 2025, THE RAY PLATFORM WAS UPGRADED TO ENHANCE COMMUNICATION, EXPAND GLOBAL REACH, AND IMPROVE PATIENT-REPORTED DATA COLLECTION TO ACCELERATE RESEARCH AND CLINICAL TRIAL PARTICIPATION.

  Expenses $403,757 · Revenue $1,063,494

As filed on the 2024 return. The filer continues this part on Schedule O, which is not shown here.

Officers and directors · 2024

As listed in Part VII of the 2024 return, in the order the filer printed them. Each return names its own; this is not a roster the organization keeps with us.

The first 25 listed. 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. Earlier years are each on their own filing page.

Filings

• 2024

  Revenue

  $14,997,967

  Expenses

  $16,743,518

  Contributions

  $13,167,396

  Grants paid

  $423,638

• 2023

  Revenue

  $15,428,604

  Expenses

  $17,103,620

  Contributions

  $13,240,424

  Grants paid

  $1,228,516

• 2022

  Revenue

  $17,248,744

  Expenses

  $15,165,951

  Contributions

  $15,780,800

  Grants paid

  $957,355

The four totals the IRS asks for on Part I of the Form 990, as filed. A dash means the figure was not present on the return — not that it was zero.

Other returns filed

• 2024 · 990-T

  Revenue

  — not reported

  Expenses

  — not reported

  Assets (EOY)

  — not reported

• 2023 · 990-T

  Revenue

  — not reported

  Expenses

  — not reported

  Assets (EOY)

  — not reported

• 2022 · 990-T

  Revenue

  — not reported

  Expenses

  — not reported

  Assets (EOY)

  — not reported

• 2021 · 990

  Revenue

  $17,263,965

  Expenses

  $15,418,407

  Assets (EOY)

  $9,829,433

• 2020 · 990

  Revenue

  $15,023,543

  Expenses

  $14,727,168

  Assets (EOY)

  $8,838,757

• 2019 · 990

  Revenue

  $11,984,507

  Expenses

  $13,777,412

  Assets (EOY)

  $8,259,627

• 2018 · 990

  Revenue

  $16,877,639

  Expenses

  $16,890,888

  Assets (EOY)

  $9,027,246

• 2017 · 990

  Revenue

  $16,331,517

  Expenses

  $15,625,648

  Assets (EOY)

  $9,520,522

• 2016 · 990

  Revenue

  $13,635,432

  Expenses

  $13,256,140

  Assets (EOY)

  $8,329,175

• 2015 · 990

  Revenue

  $12,528,179

  Expenses

  $12,459,399

  Assets (EOY)

  $8,069,534

Nonprofiteer parses Forms 990, 990-EZ and 990-PF, in a window of recent tax years. These returns are recorded from the IRS e-file index, so their figures were extracted by that index rather than read from the return here — treat them as a different source from the filings above, not as more of the same record. A dash means the index carries no figure; Form 990-T listings carry none at all. Showing the 10 most recent; the API carries the rest.

Grants made

• THE BRIGHAM WOMEN'S HOSPITAL

  $400,000

  2023 · RESEARCH

• THE REGENTS OF THE UNIVERSITY OF CALIFORNIA SAN FRANCISCO

  $280,000

  2023 · RESEARCH

• HOSPITAL FOR SPECIAL SURGERY

  $200,000

  2022 · RESEARCH

• THE REGENTS OF THE UNIVERSITY OF CALIFORNIA SAN FRANCISCO

  $151,601

  2022 · RESEARCH

• HOSPITAL FOR SPECIAL SURGERY

  $150,000

  2023 · RESEARCH

• THE BOARD OF TRUSTEES OF THE LELAND STANFORD JUNIOR UNIVERSITY

  $140,000

  2022 · RESEARCH

• MEDICAL UNIVERSITY OF SOUTH CAROLINA

  $140,000

  2023 · RESEARCH

• NEW YORK UNIVERSITY

  $140,000

  2023 · RESEARCH

• SEATTLE CHILDREN'S HOSPITAL

  $140,000

  2024 · RESEARCH

• MASSACHUSETTS GENERAL

  $140,000

  2024 · RESEARCH

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

Where these grants went next →

Grants received

• LUPUS AMERICA COMMUNITIES

  $600,000

  2022 · SUPPORTED ORGANIZATION GRANT

• LUPUS AMERICA COMMUNITIES

  $600,000

  2024 · SUPPORTED ORGANIZATION GRANT

• LUPUS AMERICA COMMUNITIES

  $600,000

  2023 · SUPPORTED ORGANIZATION GRANT

• THE LUPUS FOUNDATION OF AMERICA HEARTLAND CHAPTER INC

  $326,864

  2023

• PAYPAL CHARITABLE GIVING FUND

  $285,861

  2024 · GENERAL SUPPORT

• PHARMACEUTICAL RESEARCH AND MANUFACTURERS OF AMERICA

  $271,500

  2024 · GENERAL CONTRIBUTION

• PHARMACEUTICAL RESEARCH AND MANUFACTURERS OF AMERICA

  $214,750

  2023 · General Contribution

• AMERICAN ONLINE GIVING FOUNDATION INC

  $162,874

  2024 · GENERAL SUPPORT

• AMERICAN ONLINE GIVING FOUNDATION INC

  $138,467

  2022 · GENERAL SUPPORT

• AMERICAN ONLINE GIVING FOUNDATION INC

  $127,328

  2023 · GENERAL SUPPORT

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

Related organizations

From Schedule R Part II, where a filer lists the tax-exempt organizations it is related to by control. It does not record shared board members or money.

California fundraising campaigns

Campaigns run by paid fundraisers, commercial coventurers and thrift stores naming this organization, as California published them. Both figures are as filed, and what the first one counts depends on the campaign type — a coventurer or a thrift store files its own sales rather than money collected for the charity. The 990 reports this only as a yearly total, never per campaign.

• CREATIVE GENIUS LLC

  $42,042 in sales

  2021 · Commercial Coventurer

  $2,101 to charity

• CREATIVE GENIUS LLC

  $81,412 in sales

  2020 · Commercial Coventurer

  $4,071 to charity

Amounts are as filed and do not add up: a commercial coventurer reports one promotion's whole gross once for each charity that shared in it. A campaign may also name more than one registered charity, in which case it appears on each.

Other IRS files