2024-11-07T07:31:19-06:00 2023-12-31 203968236 JAMES A GEORGE PC 77 MAIN STREET ANDOVER MA 01810 990 2023-01-01 472589708 AMYLOIDOSIS RESEARCH CONSORTIUM INC AMYL 6178998810 320 NEVADA STREET SUITE 210 NEWTON MA 02460 ISABELLE LOUSADA CEO & CLERK 6178998810 2024-10-29 1 0 P00659906 7812458200 2023 2024-10-15 13:58:12Z ISABELLE LOUSADA 320 NEVADA STREET SUITE 210 NEWTON MA 02460 2888025 0 X WWW.ARCI.ORG X 2015 MA ACCELERATING THE DEVELOPMENT OF ADVANCED DIAGNOSTIC TOOLS AND EFFECTIVE TREATMENTS FOR SYSTEMIC AMYLOIDOSIS THROUGH COLLABORATION AND INNOVATION. 7 6 17 0 0 0 2219649 2702741 0 1525 38694 54751 1913 129008 2260256 2888025 0 0 0 0 1142712 1497962 0 0 524772 987220 917097 2129932 2415059 130324 472966 2516230 2975266 300880 226503 2215350 2748763 X ACCELERATING THE DEVELOPMENT OF ADVANCED DIAGNOSTIC TOOLS AND EFFECTIVE TREATMENTS FOR SYSTEMIC AMYLOIDOSIS THROUGH COLLABORATION AND INNOVATION. 0 0 313283 RESEARCH PROGRAMS:ARC HAS BEEN WORKING ON A NUMBER OF RESEARCH INITIATIVES INCLUDING DATASHARING, AND PATIENT EXPERIENCE STUDIES. ARC HAS ALSO DEVELOPED AN APPOINTMENT COMPANION TOOL THAT SUPPORTS PATIENTS THROUGHOUT THEIR TREATMENT JOURNEY. THE ANONYMIZED AGGREGATED DATA PROVIDES VALUABLE REAL WORLD INCITES. ARC IS DEVELOPING A PATIENT REPORTED OUTCOMES TOOL FOR USE IN CLINICAL PRACTICE. 524965 AWARENESS, EDUCATIONAL PROGRAMS AND ADVOCACY:ARC'S PATIENT AND HEALTHCARE PROFESSIONAL PROGRAMS EDUCATE PHYSICIANS AND TAILOR INFORMATION TO SUIT THE PATIENT'S NEEDS AND ARE SUCCESSFULLY MATCHING THEM TO BETTER TREATMENT CENTERS, CARE, AND CLINICAL TRIALS. ARC'S PATIENT ADVISORY BOARD ARE INSTRUMENTAL IN DEFINING AND PRIORITIZING ARC'S PATIENT PROGRAMS. ARC'S PATIENT SUPPORT SPECIALIST PROVIDES INFORMATION AND GUIDANCE FOR PATIENTS THROUGHOUT THEIR JOURNEY. ARC ALSO MAINTAINS A COMPREHENSIVE WEBSITE WITH THE LATEST INFORMATION AND NEWS ABOUT AMYLOIDOSIS. ARC'S UNIQUE AMYLOIDOSIS PATHFINDER TOOL SUPPORTS PATIENTS IN FINDING AND EVALUATING TREATMENT CENTERS AND MATCHING THEM WITH CLINICAL TRIALS. THIS TOOL HAS BEEN FURTHER ENHANCED TO SUPPORT PATIENTS WITH TELEHEALTH VISITS AND VIRTUAL CARE DURING THE PANDEMIC. ARC ALSO HOSTS ARC TALKS, A REGULAR PATIENT EDUCATIONAL WEBINAR SERIES COVERING A RANGE OF IMPORTANT TOPICS. ARC HAS DEVELOPED BOOKLETS, AND HANDOUTS TO PROVIDE PATIENTS WITH IN DEPTH INFORMATION ON AMYLOIDOSIS RELATED TOPICS. 357241 HEALTHCARE PROFESSIONAL EDUCATION:ARC HAS CARRIED OUT RESEARCH TO UNDERSTAND THE BARRIERS AND PATHWAYS TO EARLY DIAGNOSIS. FROM THIS RESEARCH, ARC DEVELOPED AND IMPLEMENT TARGETED SOLUTIONS. ARC RAISES AWARENESS AND PROVIDES PHYSICIAN EDUCATION ON THE SIGNS, SYMPTOMS, AND CARE OF AMYLOIDOSIS TO RAISE THE LEVEL OF SUSPICION, IMPROVE THE SPEED OF DIAGNOSIS, AND STANDARDS OF CARE. ARC HELD A MASTERCLASS FOR PHYSICIANS AND NURSES IN DALLAS, TX FOCUSED ON ADDRESSING THE CHALLENGES OF ACCURATE DIAGNOSIS AND MANAGING CARE. ARC HAS PUBLISHED PEER REVIEWED CONSENSUS GUIDELINES DEFINING PATHWAY FOR SUSPICION AND DIAGNOSIS WITH A FOCUS ON CARDIOLOGY AND GENERAL PRACTICE. ARC SPONSORED A SATELLITE SYMPOSIUM AT THE HFSA CONFERENCE ON THE DIAGNOSIS AND TREATMENT OF CARDIAC AMYLOIDOSIS. 353119 130533 353119 130533 1548608 1 1 0 0 0 0 0 0 0 0 1 0 0 0 0 1 1 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 1 22 0 17 1 0 0 0 0 0 0 0 0 0 0 X 7 6 0 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 1 0 CA NY PA MA X THE ORGANIZATION 6178898810 320 NEVADA STREET SUITE 210 NETWON MA 02460 ISABELLE LOUSADA PRESIDENT/CEO & SECRETARY 40.00 X X 178365 0 0 SARAH CAIRNS-SMITH CHAIR 0.25 X X 0 0 0 RICK NATHANSON BOARD MEMBER 0.25 X 0 0 0 DR RAYMOND COMENZO BOARD MEMBER 0.25 X 0 0 0 JASON SHORE TREASURER 0.25 X X 0 0 0 DENA HEATH BOARD MEMBER 3.00 X 0 0 0 DR ASHUTOSH WECHALEKAR BOARD MEMBER 0.25 X 0 0 0 178365 0 0 1 0 1 0 0 2702741 2702741 HONORARIUM AND CONSULT 541610 1525 1525 1525 54751 54751 46942 46942 OTHER MISCELLANEOUS IN 900099 82066 82066 82066 2888025 130533 0 54751 X 178365 118909 29728 29728 1130531 730856 31435 368240 69521 45985 1755 21781 119545 69221 16073 34251 135 135 105936 105936 409911 366469 32623 10819 32788 14427 2452 15909 14770 3642 7655 3473 47519 47519 143438 112104 8992 22342 14852 14339 513 14324 14324 6334 1044 5290 PROGRAM MATERIALS 65015 59490 5525 WEBSITE AND INTERNET 53132 8802 33278 11052 DUES, FEES, AND LICESNE 6078 2029 4049 TELEPHONE 2257 1291 322 644 608 113 495 2415059 1548608 341679 524772 572485 269622 226338 565116 38138 64903 25735 24958 20721 11797 11026 8924 1633842 2041743 8666 2516230 2975266 300880 226503 300880 226503 X 1504656 1925811 710694 822952 2215350 2748763 2516230 2975266 472966 60447 0 X 0 1 X 1 0 X 1684866 2106160 1472339 2219649 2702741 10185755 1684866 2106160 1472339 2219649 2702741 10185755 3842606 6343149 44643 208827 173375 38693 101693 567231 10752986 83591 0.58990 0.51650 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 198395 198395 297593 49599 49599 74399 20721 11797 8924 8924 X 2948472 60447 60447 2888025 0 2888025 2415059 0 2415059 0 2415059 PART X, LINE 2: THE ORGANIZATION IS ORGANIZED AND OPERATED EXCLUSIVELY FOR CHARITABLE AND EDUCATIONAL PURPOSES. INCOME RELATED TO THESE PURPOSES IS EXEMPT FROM FEDERAL AND STATE INCOME TAXES UNDER THE PROVISIONS OF SECTION 501(C)(3) OF THE INTERNAL REVENUE CODE. UNRELATED BUSINESS INCOME WOULD BE TAXABLE ACCORDING TO APPLICABLE INTERNAL REVENUE CODE SECTIONS. THE ORGANIZATION REGULARLY REVIEWS AND EVALUATES ITS TAX POSITIONS TAKEN IN ITS FILED RETURNS AND RECOGNIZES THE BENEFIT FROM A TAX POSITION ONLY IF IT IS MORE LIKELY THAN NOT THAT THE POSITION WOULD BE SUSTAINED UPON AUDIT BASED SOLELY ON THE TECHNICAL MERITS OF THE TAX POSITION. THE ORGANIZATION ACCRUES INTEREST AND PENALTIES ON UNCERTAIN TAX POSITIONS AS A COMPONENT OF THE PROVISION FOR INCOME TAXES. 0 0 0 0 0 0 0 0 0 ISABELLE LOUSADA PRESIDENT/CEO & SECRETARY 178365 0 0 0 0 0 0 0 0 0 178365 0 0 0 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 12C EMPLOYEES AND BOARD MEMBERS ARE REQUIRED TO DISCLOSE ANY CONFLICTS OF INTEREST ON AN ANNUAL BASIS. 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 FOR THE UPCOMING YEAR'S ANNUAL INCENTIVE PLAN. FORM 990, PART VI, SECTION C, LINE 19 ORGANIZATION'S DOCUMENTS ARE AVAILABLE UPON REQUEST. FORM 990, PART IX, LINE 11G OTHER PROFESSIONAL FEES: PROGRAM SERVICE EXPENSES 366,469. MANAGEMENT AND GENERAL EXPENSES 32,623. FUNDRAISING EXPENSES 10,819. TOTAL EXPENSES 409,911.