Lupus Foundation Of America Inc

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

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. OUR WEBSITE IS THE LEADING SOURCE FOR LUPUS-RELATED INFORMATION, WITH AN ONLINE AUDIENCE OF MORE THAN SEVEN MILLION VISITS ANNUALLY. OUR SOCIAL MEDIA FEEDS HAVE 411,000 COMBINED FOLLOWERS ACROSS THE SIX MOST-POPULAR CHANNELS.IN 2021, THE FOUNDATION EXPANDED ITS REACH THROUGH ITS WEBSITE, ONLINE EDUCATION PROGRAMS, AWARENESS CAMPAIGNS, SOCIAL MEDIA MARKETING, CELEBRITY ENGAGEMENT, AND COMMUNITY PARTNERSHIPS.WE DEVELOPED AND TRANSLATED MORE THAN 150 INFORMATION RESOURCES INTO SPANISH OVER THE LAST YEAR, EXPANDED OUR SERVICES TO ENGAGE WITH SPANISH SPEAKING CONSTITUENTS, AND CREATED A PARTNERSHIP TO EXPAND OUTREACH INTO THE HISPANIC/LATINO COMMUNITY.WE CONTINUED PROVIDING THE LATEST INFORMATION AND RESOURCES ON LUPUS AND COVID-19 VACCINES, WHICH HAVE BEEN VIEWED MORE THAN 625,000 TIMES. OUR COVID-19 GENERAL INFORMATION PAGE WAS VIEWED MORE THAN 500,000 TIMES IN 2021.THE FOUNDATION ALSO LAUNCHED A PARTNERSHIP DURING LUPUS AWARENESS MONTH WITH PATIENTPOINT TO DISTRIBUTE LUPUS EDUCATION AND SUPPORT RESOURCES TO NEARLY 7,000 PHYSICIANS AND RHEUMATOLOGISTS ACROSS THE UNITED STATES. WE CREATED MULTIPLE SOCIAL MEDIA CAMPAIGNS TO CALL ATTENTION TO HEALTH DISPARITIES AND RESOURCES THAT SERVE THE UNIQUE NEEDS OF DIFFERENT AUDIENCES IMPACTED BY LUPUS. OUR EFFORTS GENERATED NEARLY 300,000 SOCIAL MEDIA IMPRESSIONS DURING LUPUS AWARENESS MONTH AND RAISED FUNDS TO SUPPORT IMPORTANT LUPUS RESEARCH AND EDUCATION INITIATIVES.AS THE RECOGNIZED LEADER IN LUPUS, THE FOUNDATION SPEARHEADED THE ANNUAL GLOBAL OBSERVANCE OF WORLD LUPUS DAY (WLD) ON MAY 10. WE SUCCESSFULLY IMPLEMENTED A SOCIAL MEDIA CAMPAIGN, #MAKELUPUSVISIBLE, THAT GENERATED MEDIA COVERAGE WORLDWIDE. WE CREATED DOZENS OF SOCIAL MEDIA AWARENESS SHAREABLE MEMES AND TOOLS, TRANSLATED INTO NINE LANGUAGES, AND SHARED BY PARTICIPANTS FROM OVER 100 COUNTRIES.OUR MONTHLY PODCAST, THE EXPERT SERIES, CONTINUED TO GROW IN 2021 WITH NEARLY 14,000 DOWNLOADS SINCE IT LAUNCHED THE PREVIOUS YEAR.WE ENROLLED MORE THAN 2,000 PEOPLE IN TAKE CHARGE, OUR 12-WEEK EMAIL SERIES AIMED AT PROVIDING NEWLY DIAGNOSED PEOPLE WITH LUPUS WITH THE KNOWLEDGE. MORE THAN 102 GAMERS JOINED US FOR GAME ON! TO END LUPUS, OUR THREE-DAY LIVE STREAM EVENT WHERE STREAMERS FROM AROUND THE WORLD RAISED AWARENESS OF LUPUS AND FUNDS FOR LUPUS RESEARCH AND EDUCATION.

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 RESEARCH LEADING TO SIGNIFICANT TREATMENT BREAKTHROUGHS.THROUGH OUR DIRECT FUNDING SUPPORT AND VARIOUS FOUNDATION INITIATIVES, WE INVESTED MORE THAN $1.5 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 $21 MILLION IN PUBLIC FUNDING FOR LUPUS RESEARCH AND EDUCATION PROGRAMS. THE FOUNDATION ALSO HELPED SECURE A $1.25 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. THIS PAST YEAR, THE FOUNDATION:WE RECRUITED MORE THAN 1,000 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. THE DATA HELP RESEARCHERS ACCELERATE THE DEVELOPMENT OF NEW TREATMENTS AND IMPROVE DISEASE OUTCOMES.THE FOUNDATION CONTINUED FUNDING 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.WE CONTINUED OUR LEADERSHIP ROLE WITH THE ADDRESSING LUPUS PILLARS FOR HEALTH ADVANCEMENT (ALPHA) PROJECT, A GLOBAL INITIATIVE TO IDENTIFY AND PRIORITIZE TOP URGENT AND UNMET ISSUES IN LUPUS DRUG DEVELOPMENT, CLINICAL CARE, ACCESS, AND VALUE OF CARE. IN 2021, THE PROJECT ESTABLISHED TEAMS FOCUSING ON THREE PILLARS OF NEED: ACCESS TO CARE, DRUG DEVELOPMENT, AND CLINICAL CARE. THE TEAMS WILL ADDRESS CRITICAL ISSUES, INCLUDING STEROID-SPARING, HEALTH DISPARITIES, AND A BETTER UNDERSTANDING OF THE HETEROGENEITY OF LUPUS.THE FOUNDATION FUNDED STUDENT FELLOWSHIPS AND 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. THROUGH THIS PROGRAM, THE FOUNDATION ENSURES GRANTEES WILL RECEIVE NEEDED GUIDANCE AND ENCOURAGEMENT BY CONNECTING THEM WITH AN ESTABLISHED LUPUS CLINICAL SCIENTIST WHO SERVES AS THEIR MENTOR.THE FOUNDATION ALSO EXPANDED AND LAUNCHED NEW INTERNATIONAL PARTNERSHIPS WITH ORGANIZATIONS THAT PLAY A CENTRAL ROLE IN ADVANCING LUPUS SCIENCE. STRATEGIC PARTNERSHIPS DURING 2021 INCLUDED:- FUNDING THE NEXT THREE 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. - SUPPORTING THE CHILDHOOD ARTHRITIS AND RHEUMATOLOGY RESEARCH ALLIANCE (CARRA) TO ADDRESS THE TOP ISSUES IN CHILDHOOD LUPUS AND LUPUS NEPHRITIS. - FUNDING FOR THE 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 TO MANAGE THEIR CATALYST GRANT, WHICH PROVIDES ONE-YEAR FUNDING TO CANADIAN RESEARCHERS AT ANY STAGE IN THEIR CAREERS.- COLLABORATING WITH THE COVID-19 GLOBAL RHEUMATOLOGY ALLIANCE REGISTRY, A SIGNIFICANT INTERNATIONAL EFFORT TO COLLECT INFORMATION FROM CLINICIANS AND PEOPLE WITH RHEUMATIC DISEASES, SUCH AS LUPUS. THROUGH OUR ADVOCACY EFFORTS IN 2021, WE SUPPORTED LUPUS RESEARCH BY:- HOSTING THE 2021 DIGITAL ADVOCACY SUMMIT, BRINGING TOGETHER NEARLY 4,000 LUPUS ADVOCATES. DURING THE TWO-DAY PROGRAM, ADVOCATES LEARNED ABOUT THE TOP ISSUES IN LUPUS RESEARCH AND CONDUCTED ONLINE MEETINGS WITH THEIR MEMBERS OF CONGRESS.- ADVOCATING TO SECURE $21.5 MILLION IN FUNDING FOR LUPUS-SPECIFIC RESEARCH AND EDUCATION PROGRAMS, THE MOST FUNDING CONGRESS HAS EVER APPROVED FOR LUPUS-SPECIFIC PROGRAMS IN A SINGLE YEAR, INCLUDING: A. AN ADDITIONAL $10.5 MILLION, A $1 MILLION INCREASE OVER FISCAL YEAR (FY) 2020, TO SUPPORT THE NATIONAL LUPUS PATIENT REGISTRY PROGRAM AT THE US CENTERS FOR DISEASE CONTROL AND PREVENTION (CDC). THE US HOUSE OF REPRESENTATIVES APPROVED THE FUNDING IN JULY. WHEN FINALLY ENACTED INTO LAW, IT WILL BRING TOTAL SUPPORT FOR THE PROGRAM TO MORE THAN $92 MILLION. B. AN ADDITIONAL $10 MILLION FOR THE LUPUS RESEARCH PROGRAM AT THE DEPARTMENT OF DEFENSE, WHICH THE HOUSE APPROPRIATIONS COMMITTEE PASSED IN JULY. WHEN ENACTED INTO LAW, TOTAL SUPPORT FOR THE LUPUS RESEARCH PROGRAM WOULD REACH $45 MILLION. - ADVOCATING FOR AN ADDITIONAL $49 BILLION FOR THE NATIONAL INSTITUTES OF HEALTH IN FY2022, THE WORLD'S LARGEST PUBLIC FUNDER OF LUPUS RESEARCH, WHICH THE HOUSE OF REPRESENTATIVES APPROVED IN JULY.- ADDITIONAL FUNDING FOR THE OFFICE OF MINORITY HEALTH'S LUPUS PROGRAM.- 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 AS THEY MOVE FORWARD WITH THE REAUTHORIZATION OF THE PRESCRIPTION DRUG USER FEE ACT (PDUFA).- LEADING THE MARKET ACCESS WORKING GROUP, COMPRISING PEOPLE WITH LUPUS AND KEY OPINION LEADERS. MOST NOTABLY, THE WORKING GROUP ACHIEVED A FAVORABLE REVIEW FROM THE INSTITUTE FOR CLINICAL AND ECONOMIC REVIEW (ICER) FOR TWO NEWLY APPROVED LUPUS MEDICATIONS. HEALTH INSURERS AND STATE GOVERNMENTS USE THIS REPORT TO PROVIDE TIMELY ACCESS TO THE MEDICATIONS FOR PEOPLE WITH LUPUS IN THE US. - 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.- LEADING A NETWORK OF NEARLY 40,000 GRASSROOTS ADVOCATES FROM EVERY STATE AND 435 CONGRESSIONAL DISTRICTS WHO HELPED ADVANCE LUPUS PUBLIC POLICY PRIORITIES.- LAUNCHING THE LUPUS RESEARCH ACTION NETWORK (LRAN), A NEW PEER-TO-PEER INITIATIVE DEDICATED TO INCREASING KNOWLEDGE AND PARTICIPATION IN LUPUS RESEARCH.

NETWORK SUPPORT AND SERVICES: THE FOUNDATION'S NATIONAL NETWORK COMPRISES CHAPTERS, REGIONAL OFFICES, AMBASSADORS, AND SUPPORT GROUPS ACROSS THE UNITED STATES. NETWORK AFFILIATES CONDUCT PROGRAMS OF EDUCATION, RESEARCH, SUPPORT, AND ADVOCACY TO IMPROVE THE QUALITY OF LIFE AND LESSEN THE IMPACT OF LUPUS.THE FOUNDATION PROVIDES NETWORK AFFILIATES WITH CAPACITY-BUILDING SERVICES, ORGANIZATIONAL DEVELOPMENT, STRATEGIC SUPPORT, TRAINING, AND CONSULTATION. THE FOUNDATION ALSO PROVIDES OVERSIGHT AND RESOURCES TO MORE THAN 29 NATIONAL SUPPORT GROUPS AND 50 TRAINED SUPPORT GROUP FACILITATORS WHO SERVE CONSTITUENTS NATIONWIDE. WE HAVE MORE THAN 100 TRAINED AMBASSADORS WHO PROVIDE COMMUNITY-BASED PEER-TO-PEER EDUCATION AND SUPPORT. IN 2021, THE FOUNDATION EXPANDED ITS SUPPORT GROUPS TO SERVE KEY POPULATIONS IMPACTED BY LUPUS. THESE GROUPS INCLUDE MEN WITH LUPUS, A YOUTH SUPPORT GROUP FOR INDIVIDUALS AGES 7-25, AND A HISPANIC/LATINO SUPPORT GROUP THAT OFFERS HELP IN ENGLISH AND SPANISH. 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 OF THE WORLD LUPUS FEDERATION (WLF), A GLOBAL COALITION OF 250 LUPUS PATIENT ADVOCACY GROUPS FROM 75 COUNTRIES. THE FEDERATION'S MISSION IS TO ADVANCE AWARENESS AND ADVOCACY INITIATIVES THAT BRING GREATER ATTENTION AND RESOURCES TO THE FIGHT TO END LUPUS WORLDWIDE. IN 2021, THE WLF CONDUCTED A GLOBAL SURVEY TO UNDERSTAND THE BROAD IMPACT OF THE COVID-19 PANDEMIC ON PEOPLE WITH LUPUS AND EXPLORE THEIR VIEWS ON VACCINES. THE SURVEY REVEALED THE COVID-19 EXPERIENCES AMONG 6,100 PEOPLE WITH LUPUS FROM MORE THAN 85 COUNTRIES. AMONG THE MANY SIGNIFICANT FINDINGS WAS THE REVELATION THAT 50% OF RESPONDENTS HAD REPORTED DECREASED ACCESS TO AT LEAST ONE ASPECT OF LUPUS HEALTHCARE.THE FOUNDATION ALSO ENGAGED WITH VOLUNTEERS AND SUPPORTERS THROUGHOUT THE UNITED STATES. FOR THE HEALTH AND SAFETY OF PARTICIPANTS, DURING 2021, WE CONVERTED OUR LOCAL WALK TO END LUPUS NOW EVENTS INTO A SINGLE NATIONAL VIRTUAL EVENT. THIS FORMAT ENABLED GREATER PARTICIPATION BY PEOPLE FROM ALL 50 STATES, RAISING AWARENESS AND FUNDS VITAL TO IMPROVING THE QUALITY OF LIFE FOR ALL PEOPLE AFFECTED BY LUPUS.THE "VIRTUAL 6 CHALLENGE," 6 DAYS TO COMPLETE 6 MILES, REPLACED THE FOUNDATION'S IN-PERSON ENDURANCE PROGRAM, "TEAM MAKE YOUR MARK." PARTICIPATION INCREASED BY 75% OVER THE PRIOR YEAR.