2018-10-29T12:19:31-05:00 2017-12-31 431985162 SMITH SULLIVAN & BROWN PC 80 FLANDERS ROAD - SUITE 200 WESTBOROUGH MA 01581 990 2017-01-01 472589708 AMYLOIDOSIS RESEARCH CONSORTIUM INC AMYL 6178998810 320 NEVADA STREET SUITE 210 NEWTON MA 02460 ISABELLE LOUSADA PRESIDENT/CEO 6178998810 2018-10-29 1 SANDRA M BROWN CPA P01614103 5088717178 2018-10-29 71.248.188.134 2018-10-29 13:16:50 ED P 72A4FA07CE53DEC3A28436150D2A9659B101DAD9 69E9977AC052CEB93F1ED3E2D4B07C277CAC5DE2 2017 2018-06-14 16:35:46Z X ISABELLE LOUSADA 320 NEVADA STREET SUITE 210 NEWTON MA 02460 1278010 0 X WWW.ARCI.ORG X 2015 MA TO ADDRESS CRITICAL NEEDS OF THE AMYLOIDOSIS COMMUNITY. 5 4 7 0 0 0 793854 1271230 17051 6467 164 313 0 0 811069 1278010 0 50000 0 0 197588 436532 50000 0 92267 411052 418628 658640 905160 152429 372850 623943 1077608 27474 108289 596469 969319 X ACCELERATING THE DEVELOPMENT OF ADVANCED DIAGNOSTIC TOOLS AND EFFECTIVE TREATMENTS FOR SYSTEMIC AMYLOIDOSIS THROUGH COLLABORATION AND INNOVATION. 0 0 359040 0 0 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. 236204 0 6467 AWARENESS, EDUCATIONAL PROGRAMS AND ADVOCACYTHE ARC'S EDUCATIONAL PROGRAMS ON AMYLOIDOSIS REACHED THOUSANDS OF PHYSICIANS IN 2016. SCIENTIFIC MEETINGS WERE HELD AT THE ACC AND ASH, AS WELL AS HOSTING A BOOTH AND PRESENTATION AT AAHFN TO IDENTIFY AND ADDRESS CHALLENGES IN DIAGNOSING AND TREATING AMYLOIDOSIS. ARC SPONSORED THE FIRST 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 IN 2016 TO FACILITATE DIAGNOSIS.IN 2017 AND 2016, THE ARC ACTIVELY PARTICIPATED IN CONGRESSIONAL MEETINGS AND RARE DISEASE CAUCUS BRIEFINGS. ARC'S PATIENT PANELS ALSO ENSURE THAT THE PATIENT PERSPECTIVE IS INCLUDED THROUGHOUT THE DRUG DEVELOPMENT CONTINUUM. 84658 50000 0 COLLABORATIVE NETWORK AND REGULATORY PROGRAMSARC'S COLLABORATIVE NETWORK MADE UP OF 25 OF THE WORLD'S LEADING ACADEMIC CLINICAL RESEARCH CENTERS, HELPS ORGANIZATIONS PARTNER CLOSELY TO COMBINE AND STUDY RETROSPECTIVE DATA AND ACCELERATE A PRIORITIZED PORTFOLIO OF THE MOST PROMISING RESEARCH.THE ARC PRODUCED TWO VITAL DOCUMENTS TO SUPPORT THE FOOD AND DRUG ADMINISTRATION ("FDA") REGULATORY PROGRAMS: THE PATIENT VOICE AND GUIDANCE FOR DRUG DEVELOPMENT IN AL AMYLOIDOSIS. 49098 HCP PROGRAMS AND OTHER PROGRAM SERVICES 49098 729000 1 1 0 1 0 0 0 0 0 0 1 0 0 0 0 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 7 1 0 0 0 0 0 0 0 0 0 0 X 5 4 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 100000 0 0 DR GIAMPAOLO MERLINI BOARD CO-CHAIR 0.50 X X 0 0 0 DR RAYMOND COMENZO BOARD CO-CHAIR 0.50 X X 0 0 0 DENA HEATH SECRETARY/TREASURER 30.00 X X 0 0 0 MARY O'DONNELL FORMER DIRECTOR 0.25 X 0 0 0 SARAH CAIRNS-SMITH DIRECTOR 0.25 X 0 0 0 ERIC LOW FORMER DIRECTOR 0.25 X 74997 0 0 MIKE ZELIN FORMER DIRECTOR 0.25 X 0 0 0 174997 0 0 0 0 0 0 0 1271230 1271230 PROGRAM SERVICE REVENU 900099 6467 6467 6467 313 313 1278010 6467 0 313 X 50000 50000 174997 131955 32625 10417 231636 202542 3934 25160 2347 1079 233 1035 27552 21210 3310 3032 62861 51298 10613 950 18075 18075 91542 50127 643 40772 20868 11787 5403 3678 25785 21933 20 3832 34651 28083 3835 2733 56447 52695 3259 493 24109 23859 250 3305 1447 1693 165 PROGRAM MATERIALS AND P 80985 80985 905160 729000 83893 92267 6963 84371 533206 976726 79700 0 4074 13061 3450 0 0 3450 623943 1077608 27474 83289 25000 27474 108289 X 494219 323970 102250 645349 596469 969319 623943 1077608 372850 0 X 0 1 X 0 0 X 750022 793854 1271230 2815106 750022 793854 1271230 2815106 1674065 1141041 41 164 313 518 2815624 23518 X 0 0 0 905160 905160 160774 40194 0 0 123796 160774 284570 426855 30949 40194 71143 106715 3450 3450 3450 1291514 13504 13504 1278010 0 1278010 918664 13504 13504 905160 0 905160 1 EUROPE (INCLUDING ICELAND & GREENLAND) 0 0 GRANTS TO RECIPIENT LOCATED IN REGION GRANT TO ESTABLISH UK OFFICE 50000 0 0 0 0 0 0 50000 0 50000 EUROPE (INCLUDING ICELAND & GREENLAND) GRANT TO ESTABLISH UK OFFICE 50000 WIRE N/A N/A 1 0 0 0 0 0 0 0 PART I, LINE 2: DURING 2017, 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 50,127. MANAGEMENT AND GENERAL EXPENSES 643. FUNDRAISING EXPENSES 40,772. TOTAL EXPENSES 91,542.