2017-06-28T07:37:40-05:00 2016-12-31 431985162 SMITH SULLIVAN & BROWN PC 80 FLANDERS ROAD - SUITE 200 WESTBOROUGH MA 01581 990 2016-01-01 472589708 AMYLOIDOSIS RESEARCH CONSORTIUM INC AMYL 6178998810 275 GROVE STREET SUITE 2-400 NEWTON MA 02466 ISABELLE LOUSADA PRESIDENT/CEO 6178998810 2017-06-28 1 MAUREEN L SULLIVAN CPA P00296843 5088717178 2017-06-28 71.248.188.134 2017-06-28 08:34:10 ED P 35BDDC4389428678052E8834F7871B2B178C24C9 0D4C8ECD24EC751BACF6694ED05C566ACFA0BC2A 2016 2021-01-29 14:40:06Z X ISABELLE LOUSADA 275 GROVE STREET SUITE 2-400 NEWTON MA 02466 811069 0 X WWW.ARCI.ORG X 2015 MA TO ADDRESS CRITICAL NEEDS OF THE AMYLOIDOSIS COMMUNITY. 8 7 4 8 0 0 749981 793854 0 17051 41 164 0 0 750022 811069 0 0 0 0 39913 197588 0 50000 63391 266069 411052 305982 658640 444040 152429 467346 623943 23306 27474 444040 596469 X ACCELERATING THE DEVELOPMENT OF ADVANCED DIAGNOSTIC TOOLS AND EFFECTIVE TREATMENTS FOR SYSTEMIC AMYLOIDOSIS THROUGH COLLABORATION AND INNOVATION. 0 0 306345 17051 AWARENESS 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 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. 147890 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. 73945 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. 528180 1 1 0 1 0 0 0 0 0 0 0 0 0 0 0 0 1 0 0 0 1 0 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 5 0 4 1 0 0 0 0 0 0 0 0 0 0 X 8 7 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 275 GROVE STREET SUITE 2-400 NEWTON MA 02466 ISABELLE LOUSADA PRESIDENT & CEO 40.00 X X 91667 0 0 GIAMPAOLO MERLINI BOARD CO-CHAIR 0.50 X X 0 0 0 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 DIRECTOR 0.25 X 0 0 0 SARAH CAIRNS-SMITH DIRECTOR 0.25 X 0 0 0 ERIC LOW DIRECTOR 0.25 X 0 0 0 MIKE ZELIN DIRECTOR 0.25 X 0 0 0 MARY ELLEN THOMAS EXEC. OPERATIONS OFFICER 40.00 X 62042 0 0 153709 0 0 0 0 0 0 HUNTSWORTH HEALTH 800 TOWNSHIP LINE RD YARDLEY PA 19067 MEDICAL WRITING CONSULTANT 131677 1 793854 793854 PROGRAM SERVICE REVENU 900099 17051 17051 17051 164 164 811069 17051 0 164 X 162875 115579 36301 10995 20370 18190 2180 14343 10470 3012 861 11219 11219 50000 50000 301843 299019 2824 6487 2647 2863 977 3043 1849 1194 7656 5589 1608 459 32310 28260 4050 31505 31505 3118 1201 1818 99 PROGRAM MATERIALS AND P 13871 13871 658640 528180 67069 63391 551 6963 461194 533206 79700 3770 1831 4074 467346 623943 23306 27474 23306 27474 X 406572 494219 37468 102250 444040 596469 467346 623943 152429 0 X 0 1 X 0 0 X 750022 793854 1543876 750022 793854 1543876 716888 826988 41 164 205 1544081 17051 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 0 0 658640 658640 123796 30949 0 0 123796 123796 185694 30949 30949 46424 0 860569 49500 49500 811069 0 811069 708140 49500 49500 658640 0 658640 MILAN, ITALY 0 0 PROGRAM SERVICES PRE-TRIAL INVESTIGATOR MEETING 31715 0 0 0 0 0 0 31715 0 31715 0 0 0 0 0 0 X 0 SARAH M JACKSON 589 ESSEX ST UNIT 406 LYNN MA 01901 FUNDRAISING CONSULTANT 0 0 50000 0 50000 MA NY CA PA 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 MEDICAL WRITERS & CONSULTANTS: PROGRAM SERVICE EXPENSES 131,678. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 131,678. OTHER CONSULTANTS: PROGRAM SERVICE EXPENSES 167,341. MANAGEMENT AND GENERAL EXPENSES 2,824. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 170,165.