2019-11-01T08:47:21-05:00 2018-12-31 431985162 SMITH SULLIVAN & BROWN PC 80 FLANDERS ROAD - SUITE 200 WESTBOROUGH MA 01581 990 2018-01-01 472589708 AMYLOIDOSIS RESEARCH CONSORTIUM INC AMYL 6178998810 320 NEVADA STREET SUITE 210 NEWTON MA 02460 ISABELLE LOUSADA PRESIDENT/CEO 6178998810 2019-11-01 1 SANDRA M BROWN CPA P01614103 5088717178 2019-10-30 71.248.188.134 2019-11-01 09:01:08 ED P 7338CE15E43FFA4D1961D505A5DD644A04F138EE 60516F29906696E45DA798F791FFF32AB745D411 2018 2020-01-14 16:20:31Z ISABELLE LOUSADA 320 NEVADA STREET SUITE 210 NEWTON MA 02460 1416444 0 X WWW.ARCI.ORG X 2015 MA TO ADDRESS CRITICAL NEEDS OF THE AMYLOIDOSIS COMMUNITY. 7 5 9 1 0 0 1271230 1409895 6467 5952 313 597 0 0 1278010 1416444 50000 20506 0 0 436532 607859 0 0 141715 418628 1031623 905160 1659988 372850 -243544 1077608 1548310 108289 822535 969319 725775 X ACCELERATING THE DEVELOPMENT OF ADVANCED DIAGNOSTIC TOOLS AND EFFECTIVE TREATMENTS FOR SYSTEMIC AMYLOIDOSIS THROUGH COLLABORATION AND INNOVATION. 0 0 593255 RESEARCH PROGRAMSARC'S RESEARCH PROGRAM FOCUSED ON BUILDING THE INFRASTRUCTURE WITHIN THE COLLABORATIVE NETWORK TO BE ABLE TO EXECUTE A PRIORITIZED PORTFOLIO OF STUDIES. A CORE COMPONENT OF ARC'S WORK IS BIOMARKERS. BIOMARKERS ARE INDICATORS OF DISEASE STATE OR STAGE THAT CAN HELP EARLY STAGE RESEARCHERS BETTER CHARACTERIZE DISEASE, HELP IDENTIFY PROMISING NEW DRUG CANDIDATES AND ACCELERATE THEIR TESTING IN PATIENTS THROUGH GIVING AN EARLY READOUT ON EFFICACY. 164319 5952 AWARENESS, EDUCATIONAL PROGRAMS AND ADVOCACYTHE ARC'S EDUCATIONAL PROGRAMS ON AMYLOIDOSIS REACHED THOUSANDS OF PHYSICIANS IN 2018. SCIENTIFIC MEETINGS WERE HELD AT ASH, AS WELL AS HOSTING A RESEARCH STRATEGY WORKSHOP MEETING TO IDENTIFY AND ADDRESS CHALLENGES IN DIAGNOSING AND TREATING AMYLOIDOSIS. ARC SPONSORED A SATELLITE SYMPOSIUM AT THE HEART FAILURE SOCIETY OF AMERICA CONFERENCE, DEVOTED ENTIRELY TO THE DIAGNOSIS AND TREATMENT OF CARDIAC AMYLOIDOSIS. THE AMYLOIDOSIS APP IS AN INNOVATIVE TOOL FOR PHYSICIANS THAT WAS LAUNCHED AND DISTRIBUTED WORLDWIDE DURING THE YEARS PRESENTED TO FACILITATE DIAGNOSIS. 216398 20506 HEALTHCARE PROFESSIONAL EDUCATION:THE RAPID CHANGE OF PACE IN RESEARCH AND TREATMENTS FOR AMYLOIDOSIS MAKES IT VITAL THAT HEALTHCARE PROFESSIONALS HAVE ACCESS TO UP-TO-DATE INFORMATION ON BEST PRACTICES. AMYLOIDOSIS RESEARCH CONSORTIUM, INC. PROVIDES UNIQUE RESOURCES AND TAILORED INFORMATION FOR DOCTORS, NURSES AND OTHER CLINICIANS. THEY COLLABORATE WITH AMYLOIDOSIS EXPERTS FROM AROUND THE WORLD TO DESIGN EDUCATIONAL TOOLS THAT PROVIDE CLINICIANS WITH EASY ACCESS TO THE MOST CURRENT INFORMATION ON SCIENTIFIC AND CLINICAL ADVANCES TO HELP ACHIEVE EARLIER DIAGNOSIS AND THERAPEUTIC INTERVENTION. 472643 HCP PROGRAMS AND OTHER PROGRAM SERVICES 472643 1446615 1 1 0 1 0 0 0 0 0 0 1 0 0 0 1 0 1 0 0 0 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 7 0 9 1 0 0 0 0 0 0 0 0 0 0 0 0 X 7 5 0 0 0 0 0 0 0 1 1 0 0 1 1 0 0 1 1 1 1 0 MA NY PA CA X THE ORGANIZATION 6178998810 320 NEVADA STREET SUITE 210 NEWTON MA 02460 ISABELLE LOUSADA PRESIDENT & CEO 40.00 X X 104167 0 0 DR GIAMPAOLO MERLINI BOARD MEMBER 0.25 X 0 0 0 DR RAYMOND COMENZO BOARD MEMBER 0.25 X 0 0 0 DENA HEATH SECRETARY 30.00 X 0 0 0 SARAH CAIRNS-SMITH BOARD CHAIR 0.50 X 0 0 0 JASON SHORE TREASURER 0.50 X X 0 0 0 KRISTEN HSU EXECUTIVE DIRECTOR OF CLINICAL RESEARCH 40.00 X 104167 0 0 ROBYN HIMICK ASSOCIATE DIRECTOR OF CLINICAL RESEARCH 40.00 X 104167 0 0 312501 0 0 3 0 0 0 ILLINGSWORTH RESEARCH GROUP SUITE 5 SILK HOUSE PARK GREEN MACCLESFIELD CHESHIRE UK SK117QJ CLINICAL TRIAL RESEARCH 157076 MEDSCAPE 825 EIGTH AVENUE 11TH FLOOR NEW YORK NY 10019 EDUCATIONAL PROGRAM CONSULTANT 148750 2 1409895 1409895 PROGRAM SERVICE REVENU 900099 5952 5952 5952 597 597 1416444 5952 0 597 X 20506 20506 100001 66667 16667 16667 452666 355464 16101 81101 9841 6737 434 2670 45351 34435 2675 8241 10224 10224 19404 19404 496814 495012 1802 21792 20981 811 16333 9805 2552 3976 63285 42850 90 20345 38306 29480 4413 4413 101050 96037 3713 1300 138816 135311 3505 920 920 3215 1642 1184 389 PROGRAM MATERIALS AND P 121464 121464 0 0 1659988 1446615 71658 141715 84371 154728 976726 1314863 0 21469 13061 10623 2530 0 3450 2530 0 44097 1077608 1548310 83289 163848 25000 0 0 0 0 658687 108289 822535 X 323970 725775 645349 0 969319 725775 1077608 1548310 -243544 0 X 0 1 X 0 0 X 750022 793854 1271230 1416444 4231550 750022 793854 1271230 1416444 4231550 2586413 1645137 41 164 313 597 1115 4232665 29470 X 1659988 1659988 232999 58250 0 0 123796 160774 232999 517569 776354 30949 40194 58250 129393 194090 2530 2530 2530 GRANT REFUND DUE TO INDUSTRY PARTNER 393687 CONDITIONAL GRANT FUNDS RECEIVED IN ADVANCED 265000 658687 1424444 8000 8000 1416444 0 1416444 1667988 8000 8000 1659988 0 1659988 0 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM 0 1 GRANTS TO ORGANIZATION LOCATED IN REGION GRANT TO SUPPORT UK OFFICE 20506 0 1 0 0 0 1 20506 0 20506 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM GRANT TO SUPPORT UK OFFICE 20506 WIRE N/A N/A 0 0 0 0 0 0 PART I, LINE 2: DURING 2018, ARC PROVIDED FUNDING FOR START-UP COSTS FOR ITS UK AFFILIATE. FINANCIAL SUPPORT IS SENT TO THE UK VIA WIRE TRANSFER TO SUPPORT VARIOUS PROGRAM INITIATIVES, INCLUDING PARTNERING WITH MAJOR EUROPEAN UNION HEALTH BODIES AND AGENCIES TO PROMOTE ENGAGEMENT, SCIENTIFIC ADVICE AND RESEARCH. ARC RECEIVES REGULAR STATUS COMMUNICATIONS FROM ITS UK AFFILIATE AND THE CEO OF ARC SITS ON THE BOARD OF THE UK AFFILIATE TO ENSURE PROPER MONITORING OF GRANT FUNDS. FORM 990, PART VI, SECTION B, LINE 11B A COPY OF THE ORGANIZATION'S 990 IS MADE AVAILABLE TO THE BOARD OF DIRECTORS FOR REVIEW BEFORE IT IS FINALIZED AND FILED WITH APPLICABLE STATE AND FEDERAL AUTHORITIES. FORM 990, PART VI, SECTION B, LINE 15 AMYLOIDOSIS RESEARCH CONSORTIUM, INC'S EXECUTIVE COMPENSATION PROGRAM IS ADMINISTERED BY THE BOARD OF DIRECTORS. THE BOARD IS RESPONSIBLE FOR ESTABLISHING AND MAINTAINING A COMPETITIVE COMPENSATION PROGRAM FOR THE KEY EXECUTIVES AND KEY EMPLOYEES OF THE ORGANIZATION. THE BOARD MEETS AS NEEDED TO REVIEW THE COMPENSATION PROGRAM AND MAKE RECOMMENDATIONS, AS APPROPRIATE. A PERFORMANCE EVALUATION IS CONDUCTED AND REVIEWED ON AN ANNUAL BASIS AND IS INTENDED TO ENSURE THAT THE COMPENSATION PROGRAM FALLS WITHIN A REASONABLE RANGE OF COMPETITIVE PRACTICES FOR COMPARABLE POSITIONS AMONG SIMILARLY SITUATED ORGANIZATIONS. FOLLOWING THIS REVIEW, COMPENSATIONS ARE APPROVED FOR SELECTED KEY EXECUTIVES AND KEY EMPLOYEES, BASE SALARIES AND ANNUAL INCENTIVE OPPORTUNITY ADJUSTMENTS, AND OBJECTIVES AND GOALS FORTH-UPCOMING YEAR'S ANNUAL INCENTIVE PLAN. THERE IS NO OTHER COMMITTEE WITH AUTHORITY TO ACT ON BEHALF OF THE GOVERNING BODY FORM 990, PART VI, SECTION C, LINE 19 ORGANIZATION'S DOCUMENTS ARE AVAILABLE UPON REQUEST. FORM 990, PART IX, LINE 11G OTHER CONSULTANTS: PROGRAM SERVICE EXPENSES 495,012. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 1,802. TOTAL EXPENSES 496,814.