2016-06-21T09:40:17-05:00 2015-12-31 431985162 SMITH SULLIVAN & BROWN PC 80 FLANDERS ROAD - SUITE 200 WESTBOROUGH MA 01581 990 2015-02-02 472589708 AMYLOIDOSIS RESEARCH CONSORTIUM INC AMYL 6178998810 233 OLD CONCORD ROAD LINCOLN MA 01773 MARY ELLEN THOMAS EXEC. OPERATIONS OFFICER 6178998810 2016-06-21 1 LINDA M SMITH CPA P00316105 5088717178 2016-06-21 2015 2016-09-27 15:27:22Z X MARY ELLEN THOMAS 233 OLD CONCORD ROAD LINCOLN MA 01773 750022 0 X WWW.ARCI.ORG X 2015 MA TO ADDRESS CRITICAL NEEDS OF THE AMYLOIDOSIS COMMUNITY. 7 7 1 8 0 0 749981 0 41 0 750022 0 0 39913 0 5673 266069 305982 444040 467346 23306 444040 X ACCELERATING THE DEVELOPMENT OF ADVANCED DIAGNOSTIC TOOLS AND EFFECTIVE TREATMENTS FOR SYSTEMIC AMYLOIDOSIS THROUGH COLLABORATION AND INNOVATION. 0 0 154434 ADVOCACY AND AWARENESS:THE ARC IS A PATIENT-DRIVEN ORGANIZATION ENGAGED IN EDUCATING HEALTHCARE PROVIDERS AND GOVERNMENT REGULATORS. TO ACCELERATE CLINICAL TRIALS, A PILOT PROGRAM WAS INITIATED IN 2015 TO DEVELOP TOOLS TO FACILITATE ACCRUAL FOR BOTH PATIENTS AND PHYSICIANS. PATIENT SURVEYS, IN ADDITION TO PATIENT ENGAGEMENT, RESULTED IN SCIENTIFIC PUBLICATIONS. A COLLECTION OF PATIENT NARRATIVES EXPRESSED THEIR EXPERIENCES WITH AMYLOIDOSIS, DETAILING THE PATIENT'S URGENT UNMET NEEDS AS WELL AS THEIR RISK VS. BENEFIT PROFILE. THE ARC HOSTED A PATIENT-FOCUSED DRUG DEVELOPMENT MEETING WITH THE FDA IN BETHESDA, MD WITH AMYLOIDOSIS EXPERTS, INDUSTRY AND 121 AMYLOIDOSIS PATIENTS IN ATTENDANCE. A LIVE WEBCAST OF THE MEETING WAS AVAILABLE WORLDWIDE.BY INITIATING PROGRAMS THAT WILL IMPACT THE FIELD OF RESEARCH AND DRUG DEVELOPMENT, THE ARC ADVANCES PATIENT ACCESS TO OPTIMAL CARE AND TREATMENT. 101314 SCIENTIFIC MEETINGS:THE ARC HOSTED TWO SCIENTIFIC MEETINGS TO ADVANCE DISEASE UNDERSTANDING ACROSS THE SECTORS WITH AMYLOIDOSIS EXPERTS, INDUSTRY, AND THE FDA IN ATTENDANCE. THESE ROUNDTABLE MEETINGS FOCUSED ON IDENTIFYING BARRIERS AND SOLUTIONS, RESULTING IN A PROPOSED DRAFT GUIDANCE FOR INDUSTRY TO CREATE A SUCCESSFUL PATHWAY TO DRUG DEVELOPMENT IN SYSTEMIC AMYLOIDOSIS. 20097 COLLABORATION, RESEARCH PROGRAMS, BIOMARKER DEVELOPMENT:THE AMYLOIDOSIS RESEARCH CONSORTIUM IS COMMITTED TO BUILDING COLLABORATIVE RELATIONSHIPS AMONG PATIENTS, ACADEMIA, INDUSTRY, FOUNDATIONS, FEDERAL AGENCIES AND REGULATORS TO FACILITATE AND SPEED NEW THERAPIES TO MARKET. A COLLABORATIVE NETWORK WAS FORMED IN 2015 AND IS COMPRISED OF CORE TREATMENT CENTERS AND DISEASE EXPERTS FOCUSED ON EXPEDITING AND OPTIMIZING RESEARCH THROUGH EFFICIENT CLINICAL TRIAL DESIGN, ACCELERATED PATIENT ACCRUAL AND DATA SHARING TO ADDRESS AND REDUCE THE BARRIERS THAT SLOW DOWN THE DELIVERY OF CRITICAL AND PROMISING THERAPIES.THE ARC DEVELOPED A STUDY TO EVALUATE PATIENT EXPERIENCES. THIS PROVIDED PIVOTAL INFORMATION ON PATIENTS AND IDENTIFIED SIGNIFICANT AREAS OF NEED. THE RESULTS LED TO POSTER PRESENTATIONS IN A NUMBER OF MAJOR INTERNATIONAL MEDICAL MEETINGS AND WERE PUBLISHED IN A PEER-REVIEWED MANUSCRIPT.THROUGH AN EXPERT WORKING GROUP, THE ARC IDENTIFIED KEY FINDINGS TO SUPPORT THE USE OF BIOMARKERS IN EVALUATING PATIENTS AND TREATMENTS, RESULTING IN A PUBLISHED WHITE PAPER ON BIOMARKERS IN AL AMYLOIDOSIS 275845 1 1 0 0 0 0 0 0 0 0 0 0 0 0 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 0 0 0 1 0 0 0 1 0 0 1 1 0 0 0 0 0 0 0 0 X 7 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 233 OLD CONCORD ROAD LINCOLN MA 01773 ISABELLE LOUSADA PRESIDENT & CEO 40.00 X X 0 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 40.00 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 MARY ELLEN THOMAS EXEC. OPERATIONS OFFICER 40.00 X 34841 0 0 34841 0 0 0 0 0 0 0 749981 749981 41 41 750022 0 0 41 X 34744 15982 13898 4864 608 608 4561 2098 1824 639 131000 130096 904 4454 306 3978 170 58829 57473 1356 43610 43610 1896 1896 PROGRAM MATERIALS AND P 26280 26280 305982 275845 24464 5673 551 461194 3770 1831 0 467346 23306 0 23306 X 406572 37468 0 444040 0 467346 444040 0 X 0 1 X 0 0 X 750022 750022 750022 750022 248994 501028 41 41 750063 X SCHEDULE A ORGANIZATION WAS FORMED FEBRUARY 2, 2015, WITH A DECEMBER 31, 2015 YEAR END, CONSTITUTING A SHORT YEAR FOR THE FIRST YEAR OF OPERATIONS. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 877922 127900 127900 750022 0 750022 433882 127900 127900 305982 0 305982 FORM 990, PART VI, SECTION B, LINE 11 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 94,345. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 94,345. OTHER CONSULTANTS: PROGRAM SERVICE EXPENSES 28,351. MANAGEMENT AND GENERAL EXPENSES 350. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 28,701. ARTS AND GRAPHICS: PROGRAM SERVICE EXPENSES 7,400. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 7,400. PAYROLL PROCESSING FEES: PROGRAM SERVICE EXPENSES 0. MANAGEMENT AND GENERAL EXPENSES 554. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 554. AMYLOIDOSIS FOUNDATION 7151 NORTH MAIN STREET CLARKSTON MI 48346 200291856 TO INCREASE AMYLOIDOSIS EDUCATION, AWARENESS, RESEARCH & MEDIC. CARE FUNDING MI 501(C)3 CHARITY 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0