Lupus Research Alliance Inc

FREEING THE WORLD OF LUPUS.

RESEARCH:THE LUPUS RESEARCH ALLIANCE (LRA), THE LARGEST NON-GOVERNMENTAL, PRIVATE FUNDER OF LUPUS RESEARCH WORLDWIDE: FUNDS INNOVATIVE RESEARCH THAT SPANS THE SPECTRUM FROM FOUNDATIONAL TO CLINICAL RESEARCH. FOSTERS DIVERSE SCIENTIFIC TALENT, STIMULATES COLLABORATIONS, AND DRIVES DISCOVERIES TO TRANSFORM TREATMENT WHILE ADVANCING TOWARD A CURE. HAS INVESTED NEARLY $260 MILLION IN LUPUS RESEARCH THROUGH 560+ RESEARCH GRANTS. SUPPORTS RESEARCH THAT HAS CONTRIBUTED TO THE IDENTIFICATION OR FURTHER VALIDATION OF AT LEAST 15 DIFFERENT DISEASE PATHWAYS IN LUPUS AND HAS ENABLED THE DISCOVERY, PROOF OF CONCEPT AND DEVELOPMENT OF MORE THAN A DOZEN DIFFERENT THERAPIES FOR LUPUS. THE ORGANIZATION'S RESEARCH COMMITTEE OF THE BOARD OF DIRECTORS AND SCIENTIFIC ADVISORY BOARD INCLUDE TOP SCIENTIFIC EXPERTS, AND KEY LAY MEMBERS OF THE BOARD, WHO WORK WITH STAFF TO STRATEGICALLY GUIDE AND DRIVE THE RESEARCH FUNDING AGENDA.IN 2023 ALONE, APPROXIMATELY $13.8 MILLION WAS AWARDED IN GRANTS FOR 26 HIGHLY INNOVATIVE PROJECTS WITH THE POTENTIAL TO IMPROVE TREATMENT AS WELL AS UNDERSTAND THE CAUSES OF LUPUS AND THUS LEAD TO A CURE. BELOW IS A SUMMARY OF RESEARCH GRANTS AND PROGRAMS FUNDED BY THE LRA IN 2023: 1) THE GLOBAL TEAM SCIENCE AWARD PROGRAM AWARDED 1 GRANT FOR $3 MILLION. THIS GRANT PROVIDES FUNDING FOR A MULTIDISCIPLINARY, COLLABORATIVE AND HIGHLY SYNERGISTIC PROJECT THAT WILL PUSH THE BOUNDARIES OF INNOVATION AND BRIDGE RESEARCH AND CLINICAL EFFORTS IN LUPUS. THE TEAM WILL FOCUS ON UNRAVELING HUMAN LUPUS HETEROGENEITY WITH THE AIM TO DISCOVER NEW AVENUES TO PERSONAL TREATMENT APPROACHES; 2) THE DISTINGUISHED INNOVATOR AWARD PROGRAM PROVIDES OUTSTANDING SCIENTISTS WITH SUBSTANTIAL SUPPORT TO CONDUCT HIGHLY INNOVATIVE RESEARCH TO UNCOVER THE UNDERLYING CAUSES OF LUPUS, 1 DISTINGUISHED INNOVATOR AWARDS FOR A TOTAL OF $1 MILLION WAS AWARDED.3) 7 LUPUS MECHANISMS AND TARGETS AWARDS TOTALING $4.2 MILLION SUPPORT ESTABLISHED INVESTIGATORS FOCUSED ON CHARACTERIZING LUPUS PATHOGENESIS AND IDENTIFYING AND VALIDATING MOLECULAR PATHWAYS OR DRUGGABLE TARGETS THAT COULD LEAD TO NEW OR IMPROVED THERAPIES.4) 9 LUPUS INNOVATION AWARD GRANTS WERE AWARDED TOTALING ALMOST $3 MILLION OVER TWO YEARS, THIS PROGRAM PROVIDES EARLY-STAGE SUPPORT FOR EXCEPTIONALLY CREATIVE AND INNOVATIVE APPROACHES TO MAJOR CHALLENGES IN LUPUS RESEARCH; 5) THE PACE OF FUNDING IN THE DIVERSITY IN LUPUS RESEARCH PROGRAM GAINED MOMENTUM 2023 BY FUNDING THE FOLLOWING: A. 3 ADMINISTRATIVE DIVERSITY SUPPLEMENT GRANTS TO PROMOTE DIVERSITY IN LUPUS RESEARCH WERE AWARDED TOTALING APPROXIMATELY $60,000. THESE AWARDS FUND HIGHLY QUALIFIED AND PROMISING UNDERREPRESENTED MINORITY TRAINEES TO SUPPORT THEIR RESEARCH EXPERIENCES ALIGNED WITH AN LRA PARENT AWARD. B. 4 GRANTS TOTALING 2.4 MILLION WERE AWARDED TO RESEARCHERS IN THE CAREER DEVELOPMENT AWARD PROGRAM THAT AIMS TO FOSTER THE DEVELOPMENT OF OUTSTANDING, UNDERREPRESENTED MINORITY SCIENTISTS AND ESTABLISH A DIVERSE COMMUNITY OF RESEARCHERS AND CLINICIANS IN THE FIELD OF LUPUS, THE PROGRAM PROVIDES UP TO $600,000 OVER FOUR YEARS TO TALENTED UNDERREPRESENTED MINORITY SCIENTISTS. C. 1 POSTDOCTORAL GRANTS FELLOWSHIP GRANT WHICH PROVIDE FELLOWS WITH UP TO $170,000 OVER TWO YEARS TO SUPPORT THE GENERATION OF DATA AND PROGRESS NEEDED TO BECOME INDEPENDENT LUPUS RESEARCHERS.6) THE LUPUS INSIGHT PRIZE WAS AWARDED FOR $100,000. THIS AWARD RECOGNIZES A LEADING RESEARCHER WHO HAS MADE A MAJOR CONTRIBUTION RELEVANT TO LUPUS. THE LRA IS AN ORGANIZATION OF PARTNERSHIPS, BRINGING TOGETHER THE KEY PLAYERS IN THE FIGHT AGAINST LUPUS -- OUR GRANTEES, SCIENTIFIC ADVISORS, CLINICIANS, THE BIOPHARMACEUTICAL INDUSTRY, THE U.S. GOVERNMENT, AND PEOPLE LIVING WITH LUPUS. THE LRA'S UNIQUE FUNDING MODEL SUPPORTS PROMISING RESEARCH EFFORTS WITH THE GOAL OF IMPROVING THE LIVES OF PEOPLE WITH LUPUS SOON. THROUGH A COMPETITIVE PEER-REVIEW PROCESS PROJECTS BY THE LRA AIM TO TRANSLATE RESULTS FROM THE RESEARCH BENCH TO THE BEDSIDE AS QUICKLY AS POSSIBLE. BECAUSE THE LUPUS RESEARCH ALLIANCE'S BOARD OF DIRECTORS FUNDS THE ADMINISTRATIVE AND FUNDRAISING EXPENSES, 100% OF ALL OTHER CONTRIBUTIONS GOES TO SUPPORT THE LRA'S LUPUS RESEARCH PROGRAMS.

SCIENTIFIC PROGRAMS:IN 2023, THE LUPUS RESEARCH ALLIANCE (LRA) MAINTAINED THE MOMENTUM OF ITS SCIENTIFIC PROGRAMS. THE LRA'S PROGRAMS' GROWTH WAS DRIVEN BY BUILDING ON ESTABLISHED PROGRAMS WHILE CREATING OPPORTUNITIES FOR COLLABORATION WITH DIFFERENT SECTORS. NOTABLE ACHIEVEMENTS FROM 2023 INCLUDE THE FOLLOWING: COLLABORATED WITH LRA RESEARCH COMMITTEE OF THE BOARD AND SCIENTIFIC ADVISORY BOARD TO BOTH IMPLEMENT EFFICIENTLY OUR EXISTING RESEARCH STRATEGY AND TO DEVELOP AN UPDATED PLAN FOR THE NEXT FIVE YEARS. DEVELOPED AN AMBITIOUS RESEARCH STRATEGIC PLAN FOR THE LRA FOR THE NEXT FIVE YEARS (2024-2028). COMPLETED THE MOST COMPREHENSIVE RESEARCH PORTFOLIO EVALUATION FOR THE LRA TO DATE GENERATING SUBSTANTIAL DATA ON THE OUTCOMES OF LRA'S RESEARCH INVESTMENTS THAT IS BEING USED TO REFINE LRA'S RESEARCH PORTFOLIO AND TO RAISE ADDITIONAL FUNDS BY DEVELOPMENT. EXPANDED LRA'S RESEARCH PORTFOLIO WITH 26 NEW, INNOVATIVE, AND POTENTIALLY IMPACTFUL RESEARCH PROJECTS. LAUNCHED CRITICAL EFFORTS TO FURTHER MAXIMIZE LRA'S RESEARCH INVESTMENTS INCLUDING A COLLABORATIVE PROGRAM ACROSS THE GTSA GRANTEES AND A DLR TRAINING PROGRAM. FURTHER OPTIMIZED THE LUPUS INSIGHT PRIZE PROGRAM TO STIMULATE THE SUBMISSION OF A ROBUST POOL OF COMPELLING NOMINATIONS. ESTABLISHED THE LUPUS ACCELERATING BREAKTHROUGHS CONSORTIUM (LUPUS ABC)-- THE FIRST PUBLIC PRIVATE PARTNERSHIP WITH THE FDA DEDICATED TO ACCELERATING THE DEVELOPMENT OF SAFER AND MORE EFFECTIVE THERAPEUTICS FOR LUPUS. SINCE ITS CREATION, LUPUS ABC HAS LAUNCHED FOUR PROJECTS WITH THE PARTICIPATION OF KEY STAKEHOLDERS--INCLUDING REPRESENTATIVES FROM ACADEMIA, INDUSTRY, PROFESSIONAL SOCIETIES, GOVERNMENTAL AGENCIES, PATIENT ADVOCACY GROUPS, AND INDIVIDUALS WITH LUPUS. CONTINUED TO ESTABLISH KEY INFRASTRUCTURE COMPONENTS OF THE LUPUS NEXUS, THE LRA'S REGISTRY, BIOREPOSITORY AND RESEARCH INFORMATION EXCHANGE PLATFORM. THE LUPUS NEXUS WILL BE A SOURCE OF HIGHLY CURATED DATA AND BIOSPECIMENS TO CATALYZE GLOBAL COLLABORATION, RESEARCH INNOVATION, AND PRECISION MEDICINE APPROACHES TO ACCELERATE LUPUS RESEARCH AND DRUG DEVELOPMENT. MAINTAINED A STRONG ENGAGEMENT WITH INDUSTRY THROUGH THE LUPUS INDUSTRY COUNCIL (LIC). LIC MEMBERS ARE INVOLVED IN VARIOUS LRA INITIATIVES INCLUDING THE LUPUS ABC, LUPUS NEXUS, AND LIC WORKING GROUPS. DURING 2023, THE (LRA) CONVENED AN ANNUAL SCIENTIFIC CONFERENCE, THE FORUM FOR DISCOVERY, TO PROVIDE AN OPPORTUNITY FOR LRA-FUNDED SCIENTISTS TO SHARE THEIR RESEARCH DISCOVERIES MADE POSSIBLE BY LRA'S SUPPORT ADDITIONAL GOALS OF THE MEETING INCLUDE PROMOTING COLLABORATIONS, STIMULATING NEW IDEAS AND PROJECTS, AND ENABLING INTERACTIONS BETWEEN INVESTIGATORS FROM ACADEMIA AND INDUSTRY. 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; 2023 FORUM FOR DISCOVERY (ANNUAL INVESTIGATOR'S MEETING); GRANT-SPECIFIC STUDY SECTIONS WHERE INVITED RESEARCHERS DISCUSSED AND REVIEWED APPLICATIONS SUBMITTED TO THE LRA. LUPUS THERAPEUTICS, LLC:THE LRA FOUNDED LUPUS THERAPEUTICS, LLC (LT) AS THE CLINICAL RESEARCH AFFILIATE OF THE LRA IN 2018 . WITH THIS ADDITION, THE LRA IS THE ONLY ORGANIZATION LEADING LUPUS RESEARCH ACROSS THE CONTINUUM FROM ACCELERATING BASIC DISCOVERIES IN THE LAB THROUGH CLINICAL EVALUATION OF NEW THERAPIES. MANY OF THE BASIC RESEARCH BREAKTHROUGHS SUPPORTED BY THE LRA HAVE HELPED UNRAVEL THE COMPLEXITIES OF LUPUS AND ENABLED THE DEVELOPMENT OF POTENTIAL TREATMENTS AND DIAGNOSTICS NOW IN CLINICAL STUDIES. LT IS ACTIVELY SUPPORTING SEVERAL CLINICAL STUDIES FOR NEW THERAPIES THROUGH THE LUPUS CLINICAL INVESTIGATORS NETWORK (LUCIN). LT OVERSEES LUCIN, A NORTH AMERICA-BASED LUPUS CLINICAL TRIALS NETWORK OF 50+ PREMIER RESEARCH MEDICAL CENTERS. THE LRA PROVIDED OVER $2.6 MILLION IN 1-YEAR GRANTS IN 2023 TO CONTINUE FUNDING TOP ACADEMIC CENTERS TO FOSTER ROBUST, HIGH QUALITY CLINICAL TRIAL CONDUCT WITH PARTICIPATION ACROSS NORTH AMERICA.LT ALSO OFFERS EXPERTISE COMBINED WITH THAT OF 200+ LUCIN PROVIDERS AND THE LRA THROUGH COMMUNITY-BASED AND INTERNAL PROGRAMS TO ENSURE EQUITABLE ACCESS, PARTICIPATION AND REPRESENTATION OF THE DIVERSE LUPUS COMMUNITY.

PUBLIC POLICY:THE LUPUS RESEARCH ALLIANCE'S ADVOCACY EFFORTS FOCUS ON URGING CONGRESS TO PROVIDE THE FUNDS NEEDED TO SUPPORT RESEARCH INTO LUPUS THAT CAN LEAD TO BETTER TREATMENTS AND, ULTIMATELY, A CURE. EFFORTS ALSO INCLUDE WAYS TO ENSURE INCREASED DIVERSITY IN CLINICAL TRIALS AND REDUCING BARRIERS TO ENROLLMENT FOR ALL WHO WANT TO PARTICIPATE. THE TOP GOALS OF THE LUPUS RESEARCH ALLIANCE PUBLIC POLICY PROGRAM FOCUS MAINLY ON FUNDING FOR LUPUS RESEARCH THAT WILL LEAD TO BETTER TREATMENTS AND ELIMINATE RACIAL DISPARITIES IN HEALTHCARE. GOALS INCLUDE: INCREASING FEDERAL FUNDING FOR LUPUS RESEARCH BY RAISING 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); SUPPORTING THE LRA'S PARTNERSHIP WITH THE FDA, THE LUPUS ACCELERATING BREAKTHROUGHS CONSORTIUM (LUPUS ABC); AND ENSURING 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. GIVEN THE HIGH DEMAND FOR NEW RESEARCH ALONGSIDE THE RISING NUMBERS OF WOMEN TREATED AT MILITARY HEALTH FACILITIES AS WELL AS THE LINK BETWEEN POST-TRAUMATIC STRESS DISORDER (PTSD) AND THE DEVELOPMENT OF AN AUTOIMMUNEDISEASE, THE LUPUS RESEARCH ALLIANCE REQUESTS THAT CONGRESS INCREASE ITS INVESTMENT AND PROVIDE $15 MILLION FOR THE LUPUS RESEARCH PROGRAM IN THE CONGRESSIONALLY DIRECTED MEDICAL RESEARCH PROGRAMS OPERATED UNDER THE DEFENSE HEALTH PROGRAM IN THE DEFENSE APPROPRIATIONS BILL. THIS ADDITIONAL INVESTMENT IS CRITICAL FOR DISCOVERIES THAT CAN MAKE A DIFFERENCE IN PATIENTS' ABILITY TO BE THE BEST VERSION OF THEMSELVES. THE LRA LED THE PUSH FOR THE CREATION OF THE LUPUS RESEARCH PROGRAM, WHICH WAS FIRST FUNDED WITH $5 MILLION IN 2017 AND INCREASED TO $10 MILLION PER YEAR IN 2020. LRA LEADERSHIP, OUR ADVOCATES, AND ALLIED MEMBERS OF CONGRESS ARE WORKING TO ADVANCE RESEARCH PRIORITIES LIKE THIS THAT ARE CRITICAL TO THE LUPUS RESEARCH ALLIANCE AND ALL PEOPLE IMPACTED BY LUPUS.IN 2023 THE LRA INTRODUCED THE LUPUS ACCELERATING BREAKTHROUGHS CONSORTIUM (LUPUS ABC) AS THE FIRST PUBLIC-PRIVATE PARTNERSHIP WITH THE U.S. FOOD AND DRUG ADMINISTRATION (FDA) THAT FOCUSES SPECIFICALLY ON ADVANCING THE DEVELOPMENT OF SAFER AND MORE EFFECTIVE TREATMENTS URGENTLY NEEDED FOR PEOPLE WITH LUPUS. IN COLLABORATION WITH KEY STAKEHOLDERS, LUPUS ABC IS BRINGING TOGETHER PEOPLE WITH LUPUS, FEDERAL AGENCIES, MEDICAL SOCIETIES, ADVOCACY GROUPS, INDUSTRY, ACADEMIC CLINICAL RESEARCHERS, AND SCIENTISTS, WITH THE FDA, TO OVERCOME THE SCIENTIFIC HURDLES IN DRUG DEVELOPMENT THAT ARE BEYOND THE CAPACITY OF ANY SINGLE ENTITY.THE LRA ALSO WORKED TO INCLUDE LANGUAGE THAT ACCOMPANIES THE AGRICULTURE, RURAL DEVELOPMENT, FOOD AND DRUG ADMINISTRATION (FDA) BILL TO SUPPORT ACCELERATING LUPUS THERAPIES. BOTH THE HOUSE AND SENATE APPROPRIATIONS COMMITTEES HAVE INCLUDED IMPORTANT LANGUAGE RELEVANT TO LUPUS SIMILAR TO WHAT LRA REQUESTED. THE FOLLOWING LANGUAGE WAS INCLUDED IN THE SENATE REPORT:THE COMMITTEE IS AWARE OF BARRIERS THAT HAVE LONG AFFECTED THE DEVELOPMENT OF THERAPEUTICS FOR LUPUS, A DISEASE THAT PRIMARILY TARGETS WOMEN. A CHRONIC AND COMPLEX AUTOIMMUNE DISEASE, LUPUS CAN AFFECT THE JOINTS, SKIN, BRAIN, LUNGS, KIDNEYS, AND BLOOD VESSELS, CAUSING WIDESPREAD INFLAMMATION AND TISSUE DAMAGE IN THE AFFECTED ORGAN. THE COMMITTEE IS PLEASED THAT FDA PARTICIPATED IN AN EXTERNALLY-LED PATIENT-FOCUSED DRUG DEVELOPMENT MEETING WITH THE LUPUS COMMUNITY AND IDENTIFIED SOME OF THESE BARRIERS AND THAT POTENTIAL TREATMENTS ARE NOW IN CLINICAL TRIALS. THE COMMITTEE URGES FDA TO EXPEDITE ITS ONGOING WORK WITH THE LUPUS COMMUNITY TO DEVELOP SOLUTIONS TO IDENTIFIED BARRIERS THAT WILL ACCELERATE DEVELOPMENT OF NEW THERAPIES.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. EACH SPRING, LUPUS RESEARCH ADVOCATES MEET WITH MEMBERS OF CONGRESS AND THEIR STAFF TO DESCRIBE THEIR PERSONAL LUPUS JOURNEY AND HOW THE DISEASE HAS AFFECTED THEIR LIFE, AND TO REQUEST SPECIFIC POLICIES THAT WILL MOVE LUPUS RESEARCH FORWARD. 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.