LUPUS FOUNDATION OF AMERICA INC
2121 K STREET NW NO 200, WASHINGTON, DC 20037 www.lupus.org

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Organizations Filed Purposes: THE LUPUS FOUNDATION OF AMERICA, INC. (THE FOUNDATION) IS DEDICATED TO IMPROVING THE QUALITY OF LIFE FOR ALL PEOPLE AFFECTED BY LUPUS THROUGH PROGRAMS OF RESEARCH, EDUCATION, SUPPORT, AND ADVOCACY.

IMPROVE THE QUALITY OF LIFE FOR PEOPLE WITH LUPUS THROUGH RESEARCH, EDUCATION, SUPPORT AND ADVOCACY.

PUBLIC INFORMATION AND EDUCATION: THE LUPUS FOUNDATION OF AMERICA EXECUTES ONGOING EFFORTS TO INCREASE PUBLIC AWARENESS AND UNDERSTANDING OF LUPUS AND ITS HEALTH CONSEQUENCES AS A TOOL TO IMPROVE EARLY DIAGNOSIS AND TREATMENT OF THE DISEASE. ONGOING EFFORTS INCLUDES PUBLIC AWARENESS CAMPAIGNS, MEDIA RELATIONS, ONLINE AND SOCIAL MARKETING, AND OUTREACH EFFORTS TO BUILD AND ENHANCE SUSTAINABLE CORPORATE AND COMMUNITY PARTNERSHIPS. THROUGHOUT THIS PAST YEAR, THE LUPUS FOUNDATION OF AMERICA (FOUNDATION) CONTINUED TO EXPAND ITS REACH THROUGH IN-PERSON PROGRAMS, SOCIAL MEDIA PLATFORMS AND THE FOUNDATION'S WEBSITES, ENGAGING CELEBRITIES, AND PROMOTING ITS NATIONAL AWARENESS CAMPAIGN, BE FIERCE.TAKE CONTROL. THIS DIGITAL-BASED CAMPAIGN SEEKS TO REACH YOUNG WOMEN AT GREATEST RISK FOR LUPUS TO RECOGNIZE THE SIGNS OF LUPUS AND TO TAKE ACTION IF THEY ARE EXPERIENCING THEM (WITH THE ULTIMATE GOAL TO REDUCE THE TIME RECEIVING A LUPUS DIAGNOSIS). OUR EFFORTS THIS YEAR RESULTED IN NEARLY 54 MILLION IMPRESSIONS AND 50,000 VISITS TO OUR CAMPAIGN WEBSITE TO LEARN MORE. A NEW PARTNERSHIP WITH MINOR LEAGUE BASEBALL HELPED US REACH 377,000 FANS WITH LUPUS SIGNS AND SYMPTOMS MESSAGES IN ENGLISH AND SPANISH. KEY CORPORATE PARTNERSHIPS HELPED DISTRIBUTE BROCHURES ABOUT LUPUS TO PHYSICIAN OFFICES AND GARNER 12.5 MILLION EXPOSURES OF KEY TIME TO DIAGNOSIS MESSAGES. AND MORE THAN 100 VOLUNTEER AMBASSADORS FROM 24 STATES WERE TRAINED TO HELP EXPAND OUR REACH AND OUR IMPACT BY RAISING AWARENESS AND EDUCATING THEIR COMMUNITIES ABOUT LUPUS AND THE WORK OF THE LUPUS FOUNDATION OF AMERICA. THE FOUNDATION REMAINS THE NUMBER ONE ONLINE SOURCE FOR LUPUS-RELATED INFORMATION, WITH AN AUDIENCE OF 7 MILLION ANNUAL VISITS TO ITS WEBSITE PROPERTIES, AND MORE THAN 350,000 FOLLOWERS THROUGH ITS SOCIAL MEDIA PROPERTIES. IN ITS FOURTH YEAR OF THE FIVE-YEAR COOPERATIVE AGREEMENT WITH THE U.S. CENTERS FOR DISEASE CONTROL AND PREVENTION (CDC), THE FOUNDATION CONTINUES TO RAISE AWARENESS OF THE SIGNS AND SYMPTOMS OF LUPUS AND PROVIDE GUIDANCE ON THE NEXT STEPS TO TAKE IF LUPUS IS SUSPECTED, AS WELL AS INCREASE KNOWLEDGE ON MANAGING LUPUS. IN ADDITION TO THE BE FIERCE CAMPAIGN, SOME KEY ACCOMPLISHMENTS THIS YEAR INCLUDE:- MADE UPDATES AND REVISIONS TO WEB CONTENT TO BETTER ENGAGE HEALTHCARE PROFESSIONALS AND MAKE IT EASIER FOR THEM TO SHARE IMPORTANT LUPUS RESOURCES WITH THEIR PATIENTS. - CONTINUED TO GROW OUR ONLINE COMMUNITY, LUPUSCONNECT, WHERE MORE THAN 10,000 PEOPLE WITH LUPUS AND CAREGIVERS MAKE CONNECTIONS AND FIND PRACTICAL INSIGHTS FROM OTHERS.-BASED ON USER INPUT, ENHANCED OFFERINGS THROUGH TAKE CHARGE, A WEEKLY EDUCATION EMAIL SERIES DESIGNED TO PROVIDE PEOPLE WITH LUPUS WITH TIPS AND RESOURCES THAT CAN EMPOWER THEM TO TAKE CHARGE OF THEIR HEALTH. IT INCLUDES FOUR NEW TOPICS/EMAILS INCLUDING PREGNANCY, MENTAL HEALTH, STAYING ACTIVE, DIET AND NUTRITION. -CREATED AN ONLINE SELF-CARE PROGRAM. USER EXPERIENCE WILL BE GATHERED IN 2020 SO FURTHER ENHANCEMENTS CAN BE MADE PRIOR TO A BROAD LAUNCH.

RESEARCH: OUR NATIONAL RESEARCH PROGRAM SEEKS TO FIND SOLUTIONS TO PROBLEMS THAT FOR DECADES HAVE STALLED PROGRESS IN LUPUS RESEARCH, LUPUS TREATMENT DEVELOPMENT, PATIENT CARE AND TREATMENT ACCESS. WE AGGRESSIVELY PURSUED STRATEGIES TO INCREASE FEDERAL, STATE AND INDUSTRY SUPPORT FOR RESEARCH ON LUPUS, FACILITATED STRATEGIC COLLABORATIONS, LED GLOBAL COLLABORATIONS TO DRIVE CONSENSUS, AND PROVIDED DIRECT FINANCIAL SUPPORT TO RESEARCHERS THROUGH THE FOUNDATION'S PEER REVIEWED RESEARCH GRANT PROGRAMS. THROUGH OUR DIRECT RESEARCH FUNDING SUPPORT AND VARIOUS RESEARCH INITIATIVES, WE INVESTED NEARLY $2 MILLION IN TOTAL RESEARCH PROGRAM. FURTHERMORE THROUGH OUR ADVOCACY EFFORTS, MORE THAN $100 MILLION IN TOTAL FEDERAL FUNDING WAS GENERATED TO ADVANCE LUPUS RESEARCH AND EDUCATION, ENSURING PATIENT ACCESS TO TREATMENTS, AND ENGAGING PEOPLE WITH LUPUS TO SHARE THEIR PERSPECTIVE IN THE DRUG DEVELOPMENT PROCESS. OVER THE YEARS WE HAVE LED INITIATIVES TO OVERCOME BARRIERS TO THE DEVELOPMENT AND APPROVAL OF NEW, EFFECTIVE AND TOLERABLE TREATMENTS FOR PEOPLE WITH LUPUS. THIS PAST YEAR, THE FOUNDATION:- REACHED GLOBAL CONSENSUS ON THE FUNDAMENTAL MISSING PILLARS TO LUPUS TREATMENT DEVELOPMENT CARE AND ACCESS AND PUBLISHED RESULTS IN A PEER REVIEW PUBLICATION. - THE LUPUS FOUNDATION OF AMERICA IS LEADING THIS EFFORT WITH THE GOAL OF CREATING A GLOBAL ROADMAP FOR KEY STAKEHOLDERS TO FOLLOW AND IS WORKING TOWARD THAT PLAN IN THE COMING YEAR. - CONTINUED OUR IMPORTANT PARTNERSHIP WITH THE FOUNDATION FOR THE NATIONAL INSTITUTES OF HEALTH (FNIH) TO SUPPORT A 5-YEAR INITIATIVE TO DEVELOP NEW MEDICINES FOR LUPUS AND OTHER DISEASES. THE SUCCESS OF THIS PROGRAM AND EFFORTS TO DATE HAVE LED TO AN ADDITIONAL 6TH YEAR OF FUNDING FROM KEY PARTNERS. RESULTS FROM THIS EFFORT HAVE STARTED TO APPEAR IN PEER REVIEW PUBLICATIONS. NEW TREATMENT TARGETS HAVE BEEN IDENTIFIED THROUGH THIS EFFORT FOR LUPUS NEPHRITIS. - THE LFA CONTINUES ITS EFFORTS TO POOL CLINICAL TRIAL DATA (DE-IDENTIFIED) PROVIDED BY PARTICIPATING BIOPHARMA COMPANIES WITH THE INTELLIGENCE THEY NEED TO CONTINUE TO IMPROVE CLINICAL TRIAL DESIGN. NEW FINDINGS WERE PRESENTED AT A MAJOR SCIENTIFIC MEETING AND PUBLISHED IN PEER REVIEWED MEDICAL JOURNALS REACHING PHYSICIANS AND OTHER HEALTH CARE PROFESSIONALS GLOBALLY. - CONTINUED TO PUBLISH PAPERS FROM IMPORTANT AND PIVOTAL BASIC, CLINICAL, TRANSLATIONAL AND EPIDEMIOLOGICAL STUDIES OF ALL ASPECTS OF LUPUS AND RELATED DISEASES IN OUR PEER REVIEWED, OPEN ACCESS JOURNAL, THE FIRST OF ITS KIND IN LUPUS, LUPUS SCIENCE & MEDICINE. THE JOURNAL PROVIDES A BARRIER-FREE FORUM FOR PUBLICATION OF GROUND-BREAKING STUDIES IN LUPUS. - PROVIDED NEW FUNDING TO ADDRESS ISSUES CRITICALLY IMPORTANT TO PEOPLE WITH LUPUS, INCLUDING TREATMENT DEVELOPMENT FOR CHILDREN WITH THE DISEASE. - CONTINUED MULTI-YEAR EFFORTS WHICH EXPLORE MESENCHYMAL STEM CELLS AS A POTENTIAL TREATMENT FOR PEOPLE WITH THE DISEASE. ALL CLINICAL SITES ARE CURRENTLY ENROLLING PARTICIPANTS AND THE STUDY IS EXPECTED TO FINISH ON TIME ACCORDING TO THE TIMELINE DEVELOPED IN COOPERATION WITH STUDY PARTNER THE NATIONAL INSTITUTE FOR ALLERGY AND INFECTIOUS DISEASES (NIAID). - HELPED TO ADDRESS THE ONGOING DECLINE IN SCIENTIFIC MOMENTUM AND LOSS OF CURRENT AND FUTURE LUPUS INVESTIGATORS CAUSED BY A DECLINE IN FEDERAL SUPPORT FOR RESEARCH THROUGH OUR STUDENT FELLOWSHIP AND CAREER DEVELOPMENT GRANT MECHANISMS. AS WELL, THE FOUNDATION HAS BEEN WORKING TO BUILD AND SOLIDIFY KEY PARTNERSHIPS WITH ORGANIZATIONS THAT PLAY A CENTRAL ROLE TO THE ADVANCEMENT OF THE SCIENCE OF LUPUS. KEY 2019 PARTNERSHIPS INCLUDE:- THE FIRST PUBLICATION OUTLINING THE BARRIERS TO CARE FOR CHILDREN WITH LUPUS. THIS EFFORT, CONDUCTED IN CONJUNCTION WITH THE CHILDHOOD ARTHRITIS AND RHEUMATOLOGY RESEARCH ALLIANCE (CARRA) IS THE FIRST OF ITS KIND. - THE SYSTEMIC LUPUS ERYTHEMATOSUS COLLABORATING CLINICS (SLICC), THE PREMIER BODY OF LUPUS EXPERTS FROM THE US AND AROUND THE GLOBE, TO FUND A MULTI-YEAR EFFORT WHICH UPDATES THE SLICC DAMAGE INDEX, ONE OF THE ONLY OUTCOMES MEASURES IN LUPUS WHICH HAS BEEN ACCEPTED BY THE FDA FOR USE IN CLINICAL TRIALS. THE NEW INDEX WILL INCLUDE KEY LEARNINGS SINCE DEVELOPMENT. IT WILL ALSO INCLUDE THE DISEASE AND IMPACT OF DAMAGE ON CHILDREN SO THAT IT MAY BE USED IN PEDIATRIC TRIALS IN THE FUTURE. THROUGH OUR ADVOCACY EFFORTS IN 2019, WE HAVE:- SECURED AN ADDITIONAL $8.5 MILLION, A $1 MILLION INCREASE OVER FY19, TO SUPPORT THE NATIONAL LUPUS PATIENT REGISTRY PROGRAM AT THE CDC IN FY20, BRINGING TOTAL FUNDING FOR THE PROGRAM TO $72.3 MILLION.- HELPED OUR PARTNER CARRA SECURE A $2.4 MILLION GRANT TO ENHANCE THEIR EXISTING WORK AND CONTINUE LOOKING INTO THE LIFETIME IMPACT OF LUPUS ON CHILDREN AND TEENAGERS.- SECURED AN ADDITIONAL $10 MILLION IN FUNDING FOR THE LUPUS RESEARCH PROGRAM AT THE DEPARTMENT OF DEFENSE, A DOUBLING OF FUNDING OVER FY19 WHICH BRINGS TOTAL DOD FUNDING FOR LUPUS RESEARCH TO NEARLY $47 MILLION. - SECURED AN ADDITIONAL $250,000 SPECIFICALLY FOR THE OFFICE OF MINORITY HEALTH'S LUPUS PROGRAM, IN ADDITION TO THE ESTIMATED $2 MILLION IT IS ALREADY EXPECTED TO RECEIVE, TO SUPPORT A GRANT MECHANISM SPECIFICALLY FOCUSED ON ADDRESSING THE BARRIERS TO MINORITY PARTICIPATION IN CLINICAL TRIALS.- ADVOCATED FOR AND SECURED A $2.6 BILLION INCREASE FOR THE NATIONAL INSTITUTES OF HEALTH, THE LARGEST PUBLIC FUNDER OF LUPUS RESEARCH IN THE WORLD. - CONTINUED TO SUPPORT THE FOOD AND DRUG ADMINISTRATION'S COMMITMENT TO INCORPORATING THE PATIENT VOICE INTO THEIR REGULATORY PROCESS TO ACCELERATE THE DRUG DEVELOPMENT PROCESS AND GET SAFER, MORE EFFECTIVE LUPUS THERAPIES TO MARKET FASTER.

NETWORK SUPPORT AND SERVICES: THE FOUNDATION'S NATIONAL NETWORK IS COMPOSED OF CHAPTERS, REGIONAL OFFICES, COMMUNITY AMBASSADORS, AND LOCAL SUPPORT GROUPS ACROSS THE UNITED STATES. THE NETWORK SUPPORTS THOSE LIVING WITH LUPUS THROUGH OUR PROGRAMS OF EDUCATION, RESEARCH, SUPPORT AND ADVOCACY ALL DESIGNED TO IMPROVE THE QUALITY OF LIFE FOR THOSE WHO SUFFER FROM THE IMPACT OF LUPUS. THE FOUNDATION PROVIDES CAPACITY-BUILDING SERVICES, STRATEGIC SUPPORT, ON-SITE CONSULTATION, AND ORGANIZATIONAL DEVELOPMENT SUPPORT AND TRAINING TO OUR NETWORK, AS WELL AS OVERSIGHT AND RESOURCES TO THE SUPPORT GROUP FACILITATORS ACROSS THE COUNTRY WHO SERVE CONSTITUENTS. ADDITIONALLY, OUR WALK TO END LUPUS NOW EVENTS RALLIED NEARLY 70,000 INDIVIDUALS IN 74 CITIES TO RAISE AWARENESS OF LUPUS AND FUNDS FOR LOCAL COMMUNITIES TO IMPROVE THE QUALITY OF LIFE FOR PEOPLE WITH LUPUS. THE FOUNDATION ALSO IS LEADING THE WORLD LUPUS FEDERATION, A COALITION OF GLOBAL LUPUS PATIENT ADVOCACY GROUPS TO ADVANCE LUPUS AWARENESS AND ADVOCACY INITIATIVES AROUND THE WORLD THAT CONTINUES TO BRING GREATER GLOBAL ATTENTION AND RESOURCES TO THE FIGHT TO END LUPUS. THIS YEAR WE RELEASED RESULTS OF A LARGE-SCALE INTERNATIONAL SURVEY THAT REVEALED LOW AWARENESS OF LUPUS RESULTS IN PUBLIC MISCONCEPTIONS ABOUT THE DISEASE. THE LACK OF UNDERSTANDING CONTRIBUTES TO THE STIGMATIZATION OF PEOPLE WITH LUPUS, OFTEN LEAVING THEM FEELING ISOLATED FROM FAMILY AND FRIENDS.

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