LUPUS RESEARCH ALLIANCE INC
275 MADISON AVE 10TH FLOOR, NEW YORK, NY 10016 lupusresearch.org

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Organizations Filed Purposes: THE LUPUS RESEARCH ALLIANCE LEADS THE WORLD IN TRANSFORMING THE LIVES OF PEOPLE AFFECTED WITH LUPUS BY USING THE POWER OF SCIENCE TO DRIVE NEW TREATMENTS, PREVENT DISEASE PROGRESSION, AND FIND A CURE.

TO SUPPORT RESEARCH TO PREVENT, TREAT AND CURE LUPUS.

RESEARCH:THE LUPUS RESEARCH ALLIANCE IS THE LARGEST NON-GOVERNMENTAL, NON-PROFIT FUNDER OF LUPUS RESEARCH WORLDWIDE. THE ORGANIZATION AIMS TO TRANSFORM TREATMENT WHILE ADVANCING TOWARD A CURE BY FUNDING THE MOST INNOVATIVE LUPUS RESEARCH, FOSTERING DIVERSE SCIENTIFIC TALENT, AND DRIVING DISCOVERY TOWARD BETTER DIAGNOSTICS, IMPROVED TREATMENTS AND ULTIMATELY A CURE FOR LUPUS. THE ORGANIZATION'S RESEARCH COMMITTEE OF THE BOARD OF DIRECTORS AND SCIENTIFIC ADVISORY BOARD ARE COMPRISED OF TOP SCIENTIFIC EXPERTS WHO WORK WITH STAFF TO STRATEGICALLY GUIDE AND DRIVE THE RESEARCH FUNDING AGENDA. SINCE ITS INCEPTION, THE LUPUS RESEARCH ALLIANCE HAS COMMITTED OVER $202 MILLION TO FUND LUPUS RESEARCH PROJECTS. IN 2019 ALONE, NEARLY $11 MILLION WAS AWARDED IN GRANTS FOR HIGHLY INNOVATIVE PROJECTS WITH THE POTENTIAL TO IMPROVE TREATMENT AS WELL AS UNDERSTAND THE CAUSES OF LUPUS THAT CAN LEAD TO A CURE: 1) A NEW INVESTIGATOR INITIATED CLINICAL TRIAL AWARD WAS MADE IN 2019 FOR OVER $2.5 MILLION OVER THREE YEARS THAT WILL EVALUATE THE EFFICACY OF ACE INHIBITORS IN COGNITIVE IMPAIRMENT ASSOCIATED WITH SLE. 2) 6 TARGET IDENTIFICATION IN LUPUS (TIL) THREE-YEAR GRANTS WITH A FOCUS OF IDENTIFYING NEW DRUG TARGETS AND HELPING FACILITATE EXPLORATION OF DRUG DEVELOPMENT WITH A TOTAL NEARLY $3.6 MILLION OVER THREE YEARS; 3) 6 NOVEL RESEARCH PROGRAM GRANTS THAT FOCUS ON INNOVATIVE EARLY-STAGE FUNDAMENTAL RESEARCH THAT ILLUMINATE THE DISEASE MECHANISM; AWARDED $1.8 MILLION OVER THREE YEARS;4) 2 DISTINGUISHED INNOVATOR AWARDS (DIA) FOCUS ON UNCOVERING THE UNDERLYING CAUSES OF LUPUS THAT CAN LEAD TO A CURE FOR $1 MILLION OVER TWO YEARS5) JOINT LUPUS RESEARCH ALLIANCE/PFIZER'S CENTERS FOR THERAPEUTIC INNOVATION (CTI) GRANTS WERE AWARDED FOR OVER $250,000 FOR ONE YEAR6) THE LUPUS INSIGHT PRIZE WAS AWARDED FOR $100,000. THIS AWARD RECOGNIZES AND FURTHERS WORK BY A LEADING RESEARCHER WHO HAS MADE A MAJOR CONTRIBUTION TO THE FIELD.7) THE LUPUS RESEARCH ALLIANCE SUPPORTED THE WORK OF THE LUPUS NEPHRITIS TRIALS NETWORK WITH A $200,000 AWARD - SUPPORTING COLLABORATIONS TO IDENTIFY AND VALIDATE THERAPEUTIC TARGETS FOR LUPUS NEPHRITIS.8) IN ADDITION, NEARLY $400,000 WAS FUNDED ON A STRATEGICALLY FOCUSED NON-PEER REVIEWED EFFORT TO HELP IDENTIFY WHERE LUPUS PATIENTS ARE IN THE US.THE LUPUS RESEARCH ALLIANCE'S UNIQUE FUNDING MODEL SUPPORTS PROMISING RESEARCH EFFORTS WITH THE GOAL OF IMPROVING THE LIVES OF PEOPLE WITH LUPUS IN THE NEAR FUTURE. THROUGH A COMPETITIVE PEER-REVIEW PROCESS PROJECTS BY THE LUPUS RESEARCH ALLIANCE AIM TO TRANSLATE RESULTS FROM THE RESEARCH BENCH TO THE BEDSIDE AS QUICKLY AS POSSIBLE. BECAUSE THE LUPUS RESEARCH ALLIANCE BOARD OF DIRECTORS FUNDS THE ADMINISTRATIVE AND FUNDRAISING EXPENSES, 100% OF ALL OTHER CONTRIBUTIONS GOES TO SUPPORT THE LUPUS RESEARCH ALLIANCE'S LUPUS RESEARCH PROGRAMS.

SCIENTIFIC PROGRAMS:2019 WAS A YEAR OF CONSIDERABLE ACTIVITY WITHIN LUPUS RESEARCH ALLIANCE'S (LRA) SCIENTIFIC PROGRAM WITH THE IMPLEMENTATION OF LRA'S SCIENTIFIC STRATEGIC PLAN FOCUSING ON HETEROGENEITY. THE LUPUS RESEARCH ALLIANCE ENCOURAGES CROSS-SECTOR AND CROSS-DISCIPLINE PARTNERSHIPS TO FOSTER THE MOST INNOVATIVE AND PRODUCTIVE RESEARCH ENVIRONMENT. IN 2019, COLLABORATIVE MEETINGS WERE FUNDED BY THE LUPUS RESEARCH ALLIANCE WHERE RESEARCHERS WERE ENCOURAGED TO EXCHANGE IDEAS AND HELP THE LUPUS RESEARCH ALLIANCE TARGET NEW RESEARCH OPPORTUNITIES. THIS INCLUDED THE: ANNUAL FORUM FOR DISCOVERY WHERE FUNDED SCIENTISTS AND GUESTS SHARE THEIR PROGRESS; 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 OUR ADVISORS REVIEW GRANT APPLICATION SUBMISSIONS AND DISCUSS FUTURE OVERALL RESEARCH STRATEGY FOR THE ORGANIZATION; LUPUS INDUSTRY COUNCIL MEETINGS WHERE INDUSTRY FOCUSES ON SOLVING SHARED OBSTACLES TO CLINICAL TRIALS; PATIENT RESEARCH AND ADVOCACY MEETINGS THAT ENGAGE THE LUPUS COMMUNITY IN UNDERSTANDING, PARTICIPATING IN AND ADVOCATING FOR RESEARCH FUNDING; AND LUPUS CLINICAL INVESTIGATORS NETWORK (LUCIN) MEETINGS WHERE TOP RESEARCHERS DISCUSS THE DESIGN AND PROGRESS FOR LUPUS CLINICAL TRIALS. THE LUPUS RESEARCH ALLIANCE FOUNDED LUPUS THERAPEUTICS, LLC AS AN AFFILIATE OF THE LRA IN 2018 TO RUN LUCIN TO ADVANCE CLINICAL TRIALS AND FACILITATE THE DEVELOPMENT OF MUCH NEEDED NEW LUPUS TREATMENTS. THE LUPUS RESEARCH ALLIANCE PROVIDED NEARLY $4.5 MILLION IN GRANTS TO TOP ACADEMIC CENTERS TO FOSTER CLINICAL TRIAL PARTICIPATION IN LUCIN. LUPUS THERAPEUTICS (LT) CONTINUES TO HAVE A DIVERSE PORTFOLIO OF ONGOING CLINICAL TRIALS WITHIN LUCIN AND HAS COMPLETED ENROLLMENT MILESTONES FOR FIVE CLINICAL TRIALS AND REPORTED RESULTS FOR ONE TRIAL. MOREOVER, LT HAS A HEALTHY PIPELINE OF NEW BUSINESS DEVELOPMENT DISCUSSIONS WITH INDUSTRY RELATED TO PERFORMING ADVISORY SERVICES AND/OR CONDUCTING PROSPECTIVE CLINICAL TRIALS WITHIN THE NETWORK. IN 2019, THERE WERE ELEVEN ACTIVE STUDIES MANAGED VIA LUPUS THERAPEUTICS IN CONJUNCTION WITH THE LUCIN NETWORK WITH OBJECTIVES RANGING FROM;- EVALUATING THE SAFETY AND EFFICACY OF BRAND-NEW THERAPEUTICS FROM 6 DIFFERENT INDUSTRY PARTNERS- EVALUATING THE BENEFITS OF USING TIMED-RELEASED PREDNISONE - USING MRI TECHNOLOGY TO ASSESS LUPUS NEPHRITIS - TESTING THE BENEFITS OF KRILL OIL AS A MEDICAL FOOD- TESTING A SMARTPHONE APP THAT ALLOWS LUPUS PATIENTS TO REPORT SYMPTOMS IN REAL TIME AND PROVIDE MORE INFORMATION TO THEIR DOCTORS MORE EASILY. THE LUPUS RESEARCH ALLIANCE'S FORUM FOR DISCOVERY WAS A THREE DAY MEETING WITH OVER 120 DEDICATED RESEARCH SCIENTISTS, PHARMACEUTICAL INDUSTRY REPRESENTATIVES, AND LUPUS RESEARCH ALLIANCE ADVOCATES AND PARTNERS FOCUSED ENTIRELY ON LUPUS RESEARCH FOR THE THREE DAYS AT THIS ANNUAL SCIENTIFIC CONFERENCE. ALL LRA- FUNDED RESEARCHERS WERE GIVEN THE OPPORTUNITY TO PRESENT BY POSTER OR PRESENTATION THEIR MOST UP-TO-DATE RESEARCH, WHILE THE RICH DISCUSSIONS SERVED AS AN INCUBATOR TO SPARK IDEAS FOR NEW RESEARCH DIRECTIONS. IN ADDITION TO THE MANY EXCITING ADVANCES SHARED, ATTENDEES RETURNED TO THEIR LABS INSPIRED BY CRITICAL INSIGHTS FROM THE DISTINGUISHED KEYNOTE SPEAKERS.

PUBLIC POLICY:THE MAIN GOALS OF THE LUPUS RESEARCH ALLIANCE PUBLIC POLICY PROGRAM ARE TO: EDUCATE MEMBERS OF CONGRESS ABOUT ISSUES OF PRIORITY TO THE LUPUS COMMUNITY; INCREASE FEDERAL FUNDING FOR LUPUS RESEARCH BY INCREASING OVERALL NATIONAL INSTITUTES OF HEALTH (NIH) FUNDS, AND SECURE ADDITIONAL FUNDING FOR LUPUS RESEARCH THROUGH OTHER KEY FEDERAL AGENCIES INCLUDING THE VETERANS ADMINISTRATION AND DEPARTMENT OF DEFENSE (DOD). 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. FIRST, THE LUPUS RESEARCH ALLIANCE WAS RESPONSIBLE FOR PERSUADING CONGRESS TO INCLUDE LUPUS IN ITS LIST OF DESIGNATED DISEASES ELIGIBLE FOR FUNDING OVER THE PAST TEN YEARS IN THE PEER REVIEWED MEDICAL PROGRAM. MOST RECENTLY, LUPUS RESEARCH ALLIANCE ADVOCACY SUCCEEDED IN THE ESTABLISHMENT IN 2017 OF THE LUPUS RESEARCH PROGRAM UNDER THE CDMRP. OVER THE PROGRAM'S FIRST THREE YEARS, $5 MILLION WAS EARMARKED EACH YEAR SPECIFICALLY FOR LUPUS; THROUGH THE LUPUS RESEARCH ALLIANCE'S CONTINUED EFFORTS THIS AMOUNT WAS INCREASED TO $10M IN THE DEFENSE HEALTH PROGRAM IN THE FY 2020 DEFENSE APPROPRIATIONS BILL AND IS AT $10M IN THE HOUSE DEFENSE APPROPRIATIONS BILL.IN 2017, THE LUPUS PATIENT-FOCUSED DRUG DEVELOPMENT (PFDD) INITIATIVE WAS LAUNCHED TO BRING THE VOICE OF THE PATIENT TO DRUG DEVELOPMENT. THIS COLLABORATIVE EFFORT WITH THE LUPUS AND ALLIED DISEASES ASSOCIATION (LADA) AND LUPUS FOUNDATION OF AMERICA (LFA) WAS DESIGNED TO PROVIDE THE FOOD AND DRUG ADMINISTRATION (FDA) WITH PERSPECTIVES FROM PEOPLE WITH LUPUS, ADVOCATES AND CAREGIVERS TO HELP INFORM THE FDA'S DECISIONS AND OVERSIGHT DURING THE DRUG DEVELOPMENT AND REVIEW PROCESSES. A REPORT WAS SENT TO THE FDA IN SPRING 2018. THE LRA CONTINUES TO WORK TO BRING THE VOICE OF THE PATIENT TO THE DRUG REVIEW PROCESS BY RESPONDING TO RELEVANT CALLS FROM THE FDA FOR COMMENTS. 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 TREATMENT OF LUPUS. EVERY YEAR, THE LRA BRINGS ADVOCATES FROM ACROSS THE COUNTRY TO WASHINGTON DC FOR A DAY OF ADVOCACY TRAINING AND PRE-SCHEDULED MEETINGS WITH LEGISLATORS. THE GOAL IS TO INCREASE AWARENESS OF LUPUS AND THE IMPACT IT HAS ON PEOPLES' DAILY LIVES TO MEMBERS OF CONGRESS AND TO REQUEST THEIR SUPPORT FOR INCREASED FUNDING FOR LUPUS RESEARCH FROM FEDERAL PROGRAMS. TOMORROW'S ADVANCES DEPEND ON TODAY'S INVESTMENTS IN NIH RESEARCH.

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