LUPUS FOUNDATION OF AMERICA INC
Programs
Public Information and Education on Lupus
PUBLIC INFORMATION AND EDUCATION:THE LUPUS FOUNDATION OF AMERICA (FOUNDATION) CONDUCTS PROGRAMS TO INCREASE AWARENESS AND UNDERSTANDING OF LUPUS AND ITS CONSEQUENCES TO IMPROVE EARLY DIAGNOSIS AND TREATMENT. IN 2022, THE FOUNDATION CONTINUED TO EXPAND ITS REACH THROUGH ITS WEBSITE, ONLINE EDUCATION PROGRAMS, AWARENESS CAMPAIGNS, SOCIAL MEDIA MARKETING, CELEBRITY ENGAGEMENT, AND COMMUNITY PARTNERSHIPS. OUR WEBSITE IS THE LEADING SOURCE FOR LUPUS-RELATED INFORMATION, WITH AN ONLINE AUDIENCE OF MORE THAN 11 MILLION VISITS ANNUALLY. OUR SOCIAL MEDIA CHANNELS HAVE 414,000 COMBINED FOLLOWERS ACROSS THE SIX MOST-POPULAR SOCIAL PLATFORMS CHANNELS.WE CREATED AND EXECUTED MULTIPLE SOCIAL MEDIA CAMPAIGNS AS PART OF OUR "SPOTLIGHT SERIES" TO CALL ATTENTION TO THE UNIQUE IMPACT OF LUPUS AMONG DIFFERENT POPULATIONS AND AUDIENCES, SHARING IMPORTANT RESOURCES AND CALLING ATTENTION TO HEALTH DISPARITIES.DURING LUPUS AWARENESS MONTH IN MAY THE FOUNDATION HIGHLIGHTED MANY OF THE OFTEN-INVISIBLE WAYS LUPUS IMPACTS EVERYDAY LIFE. OUR EFFORTS TO RAISE AWARENESS SPANNED SOCIAL MEDIA, EMAIL AND WE EVEN SECURED NATIONAL TV SEGMENTS ON NBC'S TODAY SHOW AND TELEMUNDO'S HOY DA. THE FOUNDATION ALSO SPEARHEADED THE ANNUAL GLOBAL OBSERVANCE OF WORLD LUPUS DAY ON MAY 10. WE DEVELOPED AND EXECUTED A WORLD-WIDE "MAKE LUPUS VISIBLE" SOCIAL MEDIA CAMPAIGN TO SHARE IMPORTANT LUPUS EDUCATION FACTS, LEVERAGED THROUGH THE SHARING OF VARIOUS TOOLS, MESSAGES AND IMAGES TO SUCCESSFULLY RAISE AWARENESS OF LUPUS AND ITS IMPACT ON A GLOBAL SCALE.MORE THAN 110 CONTENT CREATORS JOINED US FOR GAME ON! TO END LUPUS, OUR THREE DAY LIVE STREAM EVENT WHERE STREAMERS FROM AROUND THE WORLD RAISE AWARENESS OF LUPUS AND FUNDS FOR LUPUS RESEARCH.GeographiesNot indicatedDatesOct 1, 2021 – Sep 30, 2022Source990No causes providedNo populations provided–$5.4MNetwork Support and Services for Lupus
NETWORK SUPPORT AND SERVICES:THE FOUNDATION'S NATIONAL NETWORK INCLUDES CHAPTERS, REGIONAL OFFICES, AMBASSADORS, AND SUPPORT GROUPS ACROSS THE UNITED STATES. NETWORK AFFILIATES CONDUCT EDUCATION PROGRAMS, SUPPORT RESEARCH, AND PROVIDE INFORMATION, SUPPORT AND ADVOCACY TO IMPROVE THE QUALITY OF LIFE FOR THOSE AFFECTED BY LUPUS AND LESSEN THE IMPACT OF LUPUS.THE FOUNDATION PROVIDES NETWORK AFFILIATES WITH CAPACITY-BUILDING SERVICES, ORGANIZATIONAL DEVELOPMENT, STRATEGIC SUPPORT, TRAINING, AND CONSULTATION. OUR AMBASSADOR PROGRAM CONTINUES TO GROW, AND PLAYS A VITAL ROLE IN SUPPORTING THE FOUNDATION'S MISSION. WE HAVE OVER 170 TRAINED AMBASSADORS WHO PROVIDE COMMUNITY-BASED PEER-TO-PEER EDUCATION AND SUPPORT.THE FOUNDATION ALSO PROVIDES OVERSIGHT AND RESOURCES TO MORE THAN 55 NATIONAL SUPPORT GROUPS AND 75 TRAINED SUPPORT GROUP FACILITATORS WHO SERVE CONSTITUENTS NATIONWIDE. IN 2022, THE FOUNDATION EXPANDED ITS SUPPORT GROUPS TO SERVE KEY POPULATIONS IMPACTED BY LUPUS. THESE GROUPS INCLUDE: MALES WHO ARE LIVING WITH LUPUS, A YOUTH GROUP FOR INDIVIDUALS UNDER AGE 25, A HISPANIC SUPPORT GROUP WHICH OFFERS HELP IN ENGLISH AND SPANISH, AN ASIAN SUPPORT GROUP THAT PROVIDES HELP THROUGHOUT THE COUNTRY AS WELL AS INTERNATIONALLY, CAREGIVERS AND CARE PARTNERS FOR LUPUS PATIENTS, AND A GROUP FOR BLACK WOMEN WHO ARE LIVING WITH LUPUS. DUE TO THE PANDEMIC, WE CONVERTED ALL SUPPORT GROUPS TO VIRTUAL GATHERINGS, ALLOWING GREATER ACCESS TO THIS VALUABLE RESOURCE NEEDED NOW MORE THAN EVER.THE FOUNDATION CONTINUES ITS LEADERSHIP ROLE OF THE WORLD LUPUS FEDERATION, A GLOBAL COALITION OF ROUGHLY 250 LUPUS PATIENT ADVOCACY GROUPS FROM 75 COUNTRIES. THE FEDERATION'S MISSION IS TO ADVANCE LUPUS AWARENESS AND ADVOCACY INITIATIVES THAT BRING GREATER ATTENTION AND RESOURCES TO THE FIGHT TO END LUPUS WORLDWIDE. IN 2022, THE WORLD LUPUS FEDERATION CONDUCTED A GLOBAL SURVEY TO UNDERSTAND THE IMPACT OF LUPUS ON THE BODY'S ORGANS. MORE THAN 6,700 PEOPLE WITH LUPUS FROM OVER 100 COUNTRIES PARTICIPATED IN THE SURVEY. AMONG THE FINDINGS, 87% REPORTED LUPUS HAS IMPACTED ONE OR MORE MAJOR ORGANS OR ORGAN SYSTEMS, AND NEARLY THREE QUARTERS OF RESPONDENTS REPORTED AN AVERAGE OF THREE ORGANS AFFECTED.THE FOUNDATION ALSO ENGAGED WITH VOLUNTEERS AND SUPPORTERS THROUGHOUT THE UNITED STATES. FOR THE FIRST TIME SINCE 2019, THE WALK TO END LUPUS NOW EVENTS WERE HELD IN-PERSON IN OVER 19 MARKETS ACROSS THE COUNTRY. BEING BACK IN-PERSON ALLOWED FOR IMPORTANT CONNECTION AND ENGAGEMENT AMONG WALK PARTICIPANTS, SPONSORS AND VOLUNTEERS, AS WELL AS THE OPPORTUNITY TO RAISE AWARENESS AND FUNDS VITAL TO IMPROVING THE QUALITY OF LIFE FOR ALL PEOPLE AFFECTED BY LUPUS. IN ADDITION, A VIRTUAL 'CELEBRATION' WAS HELD TO ALLOW FOR PARTICIPATION FROM ACROSS THE COUNTRY, INCLUDING THOSE NOT COMFORTABLE PARTICIPATING IN-PERSON, OR THOSE WITHOUT A WALK IN THEIR LOCAL COMMUNITY. THE "VIRTUAL 6 CHALLENGE," 6 DAYS TO COMPLETE 6 MILES, REPLACED THE FOUNDATION'S IN-PERSON ENDURANCE PROGRAM, "TEAM MAKE YOUR MARK AND CONTINUES TO PROVIDE A UNIQUE OPPORTUNITY FOR PARTICIPANTS FROM ALL ACROSS THE COUNTRY TO PARTICIPATE IN A WAY THAT BEST MATCHES THEIR AREA OF INTEREST.GeographiesNot indicatedDatesOct 1, 2021 – Sep 30, 2022Source990No causes providedNo populations provided–$3.4MNational Lupus Research Program
RESEARCH:OUR NATIONAL RESEARCH PROGRAM SEEKS TO SOLVE SCIENTIFIC PROBLEMS THAT FOR DECADES HAVE STALLED PROGRESS IN LUPUS RESEARCH, TREATMENT DEVELOPMENT AND ACCESS, AND PATIENT CARE. THROUGHOUT THE YEAR, WE AGGRESSIVELY PURSUED STRATEGIES TO INCREASE FEDERAL, STATE, AND INDUSTRY SUPPORT FOR LUPUS RESEARCH, FACILITATED STRATEGIC COLLABORATIONS, LED GLOBAL ALLIANCES TO DRIVE CONSENSUS, AND PROVIDED DIRECT FINANCIAL SUPPORT TO RESEARCHERS THROUGH THE FOUNDATION'S PEER-REVIEWED RESEARCH GRANT PROGRAMS. THESE EFFORTS LAY THE GROUNDWORK FOR LUPUS RESEARCH LEADING TO SIGNIFICANT TREATMENT BREAKTHROUGHS.THROUGH OUR DIRECT FUNDING SUPPORT AND VARIOUS FOUNDATION INITIATIVES, WE INVESTED OVER $1.0 MILLION TO FUND PEER-REVIEWED RESEARCH GRANTS, AWARDS TO INVESTIGATORS, RESEARCH PARTNERSHIPS, AND COLLABORATIVE PROJECTS.AS PART OF OUR RESEARCH FUNDING EFFORTS, THE FOUNDATION ALSO WORKED WITH CONGRESS TO SECURE MORE THAN $22 MILLION IN PUBLIC FUNDING FOR LUPUS RESEARCH AND EDUCATION PROGRAMS. THE FOUNDATION ALSO HELPED SECURE A $2.5 BILLION INCREASE IN FUNDING FOR THE NATIONAL INSTITUTES OF HEALTH, THE WORLD'S LARGEST PUBLIC FUNDER OF LUPUS RESEARCH.THE FOUNDATION CONTINUES TO LEAD INITIATIVES TO OVERCOME BARRIERS THAT INHIBIT PROGRESS IN DEVELOPING AND APPROVING NEW, EFFECTIVE AND TOLERABLE TREATMENTS FOR PEOPLE WITH LUPUS, INCLUDING:- RECRUITING MORE THAN 500 NEW PEOPLE WITH LUPUS AND CAREGIVERS TO PARTICIPATE IN RESEARCH ACCELERATED BY YOU (RAY), A LUPUS DATA PLATFORM FOR PEOPLE WITH LUPUS AND CAREGIVERS TO SHARE ANONYMOUS INFORMATION ABOUT THEIR LUPUS EXPERIENCE. WE ALSO WORKED TO INCREASE DIVERSE REPRESENTATION WITHIN RAY BY USING EVIDENCE-BASED APPROACHES TO RECRUITMENT. THE RAY DATA PLATFORM WAS UPGRADED IN 2022 TO COLLECT DATA OVER THE LIFESPAN OF THE PARTICIPANT WHICH WILL ENHANCE OUR CAPABILITIES TO ASSESS THE NATURAL HISTORY OF DISEASE AND ASCERTAIN ADDITIONAL INSIGHTS ABOUT A PERSON'S JOURNEY WHILE LIVING WITH LUPUS. THE DATA PLATFORM SERVES AS A CONDUIT TO HELP RESEARCHERS ACCELERATE THE DEVELOPMENT OF NEW TREATMENTS AND IMPROVE DISEASE OUTCOMES USING PATIENT-FIRST AND PATIENT-CENTRIC APPROACHES.- SUPPORTING A MULTI-YEAR STUDY OF MESENCHYMAL STROMAL CELLS AS A POTENTIAL TREATMENT FOR LUPUS. THE MEDICAL UNIVERSITY OF SOUTH CAROLINA LEADS THE STUDY IN PARTNERSHIP WITH THE NATIONAL INSTITUTE FOR ALLERGY AND INFECTIOUS DISEASES (NIAID). ALL CLINICAL SITES CONTINUE TO ENROLL PARTICIPANTS, AND INVESTIGATORS EXPECT TO FINISH THE STUDY ON TIME.- LEADING THE ADDRESSING LUPUS PILLARS FOR HEALTH ADVANCEMENT (ALPHA) PROJECT, A GLOBAL MULTI-PHASE INITIATIVE TO IDENTIFY AND ADDRESS TOP URGENT AND UNMET ISSUES THAT WILL IMPROVE LUPUS OUTCOMES. IN 2022, THE PROJECT WORK GROUPS FOCUSED ON THREE PILLARS OF NEED: ACCESS TO CARE, DRUG DEVELOPMENT, AND CLINICAL CARE. THIS YEAR, THE TEAMS ADDRESSED CRITICAL ISSUES RELATED TO TIME TO DIAGNOSIS AND EXPLORED THE BENEFITS AND NEGATIVE CONSEQUENCES OF DEFINING LUPUS AS A SPECTRUM DISEASE. THE DRUG DEVELOPMENT WORKING GROUP CONVENED A MEETING ON CLINICAL TRIAL OUTCOME MEASURES IN LUPUS THAT HIGHLIGHTED CHALLENGES IN ACCURATELY ACCOUNTING FOR LUPUS HETEROGENEITY ACROSS THE AGE CONTINUUM AND THE IMPORTANCE OF MEASURING OUTCOMES IMPORTANT TO PEOPLE LIVING WITH LUPUS. THIS WORK HAS RESULTED IN SECURING TWO TIMELY JOURNAL PUBLICATIONS THAT WILL BE PUBLISHED IN EARLY 2023.- FUNDING GRADUATE AND UNDERGRADUATE STUDENT FELLOWSHIPS AND EARLY CAREER DEVELOPMENT GRANTS TO SUPPORT A NEW GENERATION OF LUPUS CLINICIAN-SCIENTISTS. THESE AWARDS ADDRESS A SEVERE LOSS OF CURRENT AND FUTURE LUPUS INVESTIGATORS DUE TO A DECLINE IN FEDERAL TRAINING SUPPORT. THE FOUNDATION ALSO EXPANDED AND LAUNCHED NEW STRATEGIC PARTNERSHIPS WITH ORGANIZATIONS THAT PLAY A CENTRAL ROLE IN ADVANCING LUPUS SCIENCE. PART OF THE FOUNDATION'S EFFORTS AND SUPPORT FOR THESE STRATEGIC PARTNERSHIPS INCLUDED: -- FUNDING THE NEXT TWO YEARS OF THE IMPACT (IMPROVE PREGNANCY IN APS WITH CERTOLIZUMAB THERAPY) PHASE II TRIAL OF A BIOLOGIC THERAPY TO PREVENT ADVERSE OUTCOMES IN HIGH-RISK PREGNANCIES AMONG PATIENTS WITH ANTIPHOSPHOLIPID SYNDROME (APS), WITH OR WITHOUT SLE.-- FUNDING FOR SYSTEMIC LUPUS ERYTHEMATOSUS COLLABORATING CLINICS (SLICC), A GLOBAL BODY OF LUPUS EXPERTS, TO UPDATE THE SLICC DAMAGE INDEX, THE ONLY FDA-ACCEPTED OUTCOME MEASURE FOR LUPUS CLINICAL TRIALS.-- PARTNERING WITH LUPUS CANADA FOR A THIRD YEAR TO MANAGE THEIR CATALYST GRANT, WHICH PROVIDES ONE-YEAR FUNDING TO CANADIAN RESEARCHERS AT ANY STAGE IN THEIR CAREERS.THROUGH OUR ADVOCACY EFFORTS IN 2022, WE SUPPORTED LUPUS RESEARCH BY:- HOSTING THE 2022 DIGITAL ADVOCACY SUMMIT, BRINGING TOGETHER NEARLY 3,000 LUPUS ADVOCATES TO ADVOCATE FOR INCREASED RESEARCH FUNDING AND POLICIES TO IMPROVE THE LIVES OF ALL PEOPLE WITH LUPUS. DURING THE TWO-DAY PROGRAM, ADVOCATES LEARNED ABOUT THE TOP ISSUES IN LUPUS RESEARCH AND ON THE FINAL DAY OF THE SUMMIT, CONDUCTED OVER 180 DIGITAL MEETINGS WITH THEIR MEMBERS OF CONGRESS.- ADVOCATING TO SECURE $22 MILLION IN FUNDING FOR LUPUS-SPECIFIC RESEARCH AND EDUCATION PROGRAMS FOR FISCAL YEAR 2023, THE MOST FUNDING CONGRESS HAS EVER APPROVED FOR LUPUS-SPECIFIC PROGRAMS IN A SINGLE YEAR, INCLUDING AN OMNIBUS PASSED IN DECEMBER 2022 THAT INCLUDED:-- $10 MILLION TO SUPPORT THE NATIONAL LUPUS PATIENT REGISTRY PROGRAM AT THE US CENTERS FOR DISEASE CONTROL AND PREVENTION (CDC), A $500,000 INCREASE OVER FISCAL YEAR 2022 WHICH BRINGS TOTAL FUNDING FOR THE PROGRAM TO MORE THAN $101 MILLION SINCE ITS CREATION IN 2003;-- $10 MILLION FOR THE LUPUS RESEARCH PROGRAM AT THE DEPARTMENT OF DEFENSE, BRINGING TOTAL FUNDING FOR THE PROGRAM TO OVER $76 MILLION SINCE IT WAS FIRST FUNDED IN FISCAL YEAR 2017;-- $2 MILLION FOR THE OFFICE OF MINORITY HEALTH AND THEIR NATIONAL LUPUS TRAINING, OUTREACH, AND CLINICAL TRIAL EDUCATION PROGRAM, AS WELL AS SPECIFIC LANGUAGE DIRECTING THE AGENCY TO CONTINUE EFFORTS TO INCREASE MINORITY PARTICIPATION IN LUPUS CLINICAL TRIALS;-- $47.5 BILLION FOR THE NATIONAL INSTITUTES OF HEALTH, THE WORLD'S LARGEST PUBLIC FUNDER OF LUPUS RESEARCH, AN INCREASE OF $2.5 BILLION OVER THE PREVIOUS FISCAL YEAR;- LEADING A TRAINING OF THE LUPUS RESEARCH ACTION NETWORK, A GROUP OF PEOPLE WITH LUPUS WHO ARE TRAINED IN PEER-TO-PEER EDUCATION RELATED TO LUPUS CLINICAL TRIALS AND RESEARCH, WITH A SPECIFIC GOAL TO INCREASE PARTICIPATION OF MINORITIES IN LUPUS RESEARCH. THE TRAINING WAS CONDUCTED AS A KEY COMPONENT OF THE FOUNDATION'S IMPACT+ (INCREASING MINORITY PARTICIPATION AND AWARENESS IN CLINICAL TRIALS) GRANT WITH THE HHS OFFICE OF MINORITY HEALTH.- PARTNERING WITH TOP NATIONAL PATIENT ORGANIZATIONS TO LEAD THE PROTECTING THE IMMUNOCOMPROMISED COLLABORATIVE. THE COLLABORATIVE ADVOCATES FOR STATE AND FEDERAL POLICIES THAT RECOGNIZE THE UNIQUE NEEDS OF PEOPLE LIVING WITH LUPUS DURING THE COVID-19 PANDEMIC, INCLUDING VACCINES, THERAPIES, REOPENING, ACCESS TO HEALTH CARE, AND OTHER PUBLIC HEALTH INITIATIVES AND GUIDELINES. - CONTINUING TO ELEVATE THE PATIENT VOICE IN DRUG DEVELOPMENT AND REGULATORY DECISION-MAKING, PROVIDING THE LUPUS PATIENT PERSPECTIVE TO CONGRESS AND THE FDA, INCLUDING ADVOCATING FOR LEGISLATION, ENACTED IN DECEMBER 2022, TO REAUTHORIZE THE PRESCRIPTION DRUG USER FEE ACT (PDUFA), WHICH INCLUDED PROVISIONS TO INCREASE MINORITY PARTICIPATION IN CLINICAL TRIALS.- LEADING THE MARKET ACCESS WORKING GROUP, COMPRISING PEOPLE WITH LUPUS AND KEY OPINION LEADERS WORKING TO INCREASE ACCESS AND REDUCE BARRIERS TO QUALITY CARE. AS PART OF THIS EFFORT, THE FOUNDATION ENGAGED IN FEDERAL AND STATE ADVOCACY INITIATIVES, INCLUDING THOSE TO ELIMINATE HEALTH PLAN STEP THERAPY POLICIES, CO-PAY ACCUMULATORS AND OTHER POLICIES THAT RESTRICT, DELAY AND DENY PEOPLE WITH LUPUS ACCESS TO THE CARE THEY NEED, WHEN THEY NEED IT. - CONTINUING TO LEAD THE MAPRX COALITION, A GROUP OF MORE THAN 60 NATIONAL PATIENT ADVOCACY ORGANIZATIONS DEDICATED TO PROTECTING AND STRENGTHENING THE MEDICARE PART D PRESCRIPTION DRUG BENEFIT FOR 44 MILLION AMERICANS WITH DISABILITIES. NOTABLY, THE COALITION ADVOCATED FOR KEY ELEMENTS OF THE INFLATION REDUCTION ACT, ENACTED IN 2022, WHICH INCLUDED SEVERAL COALITION PRIORITIES, SPECIFICALLY:-- A $2,000 OUT-OF-POCKET CAP TO LIMIT COSTS FOR THOSE ON MEDICARE PART D;-- A "SMOOTHING MECHANISM" THAT WILL ALLOW PART D BENEFICIARIES TO SPREAD HIGH-DRUG COSTS THROUGHOUT THE PLAN YEAR;-- EXPANDED ELIGIBILITY FOR THE LOW-INCOME SUBSIDY IN PART D TO INCREASE AFFORDABILITY;-- REMOVAL OF COST-SHARING FOR VACCINES IN MEDICARE PART D, A MAJOR PUBLIC HEALTH VICTORY.- SUPPORTING PROVISIONS INCLUDED IN THE INFLATION REDUCTION ACT THAT EXTENDED AFFORDABLE CARE ACT SUBSIDIES TO HELP PEOPLE WITH LUPUS ACCESS HEALTH INSURANCE.- LEADING A NETWORK OF NEARLY 40,000 GRASSROOTS ADVOCATES FROM EVERY STATE AND 435 CONGRESSIONAL DISTRICTS WHO HELPED ADVANCE LUPUS PUBLIC POLICY PRIORITIES.GeographiesNot indicatedDatesOct 1, 2021 – Sep 30, 2022Source990No causes providedNo populations provided–$3.3M
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