AMYLOIDOSIS RESEARCH CONSORTIUM INC

EIN: 472589708 501(c)(3) Medical Research

NEWTON, MA

Total Revenue
$2,888,025
Total Expenses
$2,415,059
Total Assets
$2,975,266
Net Assets
$2,748,763
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Financial Vulnerability Assessment (Tuckman-Chang)

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Financial Trends

Organization Details

Formation Year
2015
Legal Domicile
MA
Principal Officer
ISABELLE LOUSADA
Phone
6178998810
Tax Period
2023-01-01 to 2023-12-31

AMYLOIDOSIS RESEARCH CONSORTIUM INC, founded in 2015, is a community nonprofit in the Medical Research sector that reported $2.9M in total revenue in fiscal year 2023. Revenue surged 28% from the prior year, signaling strong growth momentum. The organization ran a surplus of $473K, a strong 16% operating margin.

Mission

ACCELERATING THE DEVELOPMENT OF ADVANCED DIAGNOSTIC TOOLS AND EFFECTIVE TREATMENTS FOR SYSTEMIC AMYLOIDOSIS THROUGH COLLABORATION AND INNOVATION.

Program Service Accomplishments

Program 1
Expenses: $313,283

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...

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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.

Program 2
Expenses: $524,965

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...

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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.

Program 3
Expenses: $357,241

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...

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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.

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Trantor Score

Financial Health Score (300–850) · Liquidity · Solvency · Sustainability · Efficiency

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Liquidity (40%) • Solvency (30%) • Sustainability (20%) • Efficiency (10%)

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Financial Overview (2023)

Revenue Breakdown

Contributions & Grants $2,702,741
Program Service Revenue $1,525
Investment Income $54,751
Other Revenue $129,008
TOTAL REVENUE $2,888,025

Expense Breakdown

Grants Paid $0
Salaries & Benefits $1,497,962
Fundraising Expenses $524,772
Program Expenses $1,548,608
Other Expenses $917,097
TOTAL EXPENSES $2,415,059

Year-over-Year Comparison

2023 2022 Change
Revenue $2,888,025 $2,260,256 +0.3%
Expenses $2,415,059 $2,129,932 +0.1%
Net Income $472,966 $130,324 +2.6%
Key Indicators
Grants to Organizations Grants to Individuals Lobbying Political Activity Foreign Activities Donor Advised Fund Schedule B Required
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Financial Health Indicators

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Governance

Voting Members
7
Independent Members
6
Employees
17
Volunteers
N/A

Governance Policies

Conflict of Interest Policy
Whistleblower Policy
Document Retention Policy

Special Practices & Reported Activities

Operated a School
Operated a Hospital
Provided First Class Travel
Reported Conflict of Interest
Reported Asset Diversion
Excess Benefit Transaction
Made Political Expenditures
Engaged in Lobbying
Operated Donor Advised Fund
Maintained Art Collections
Filed Form 720

Compensation of Officers, Directors & Key Employees

Total Officers
3
$178,365
Total Directors
7
$178,365
Key Employees
0
$0
Highest Compensated
0
reported
Name Title Hours/Week Role Reportable Comp Other Comp Total
ISABELLE LOUSADA PRESIDENT/CEO & SECRETARY 40.00
Officer Director
$178,365 $0 $178,365
SARAH CAIRNS-SMITH CHAIR 0.25
Officer Director
$0 $0 $0
RICK NATHANSON BOARD MEMBER 0.25
Director
$0 $0 $0
DR RAYMOND COMENZO BOARD MEMBER 0.25
Director
$0 $0 $0
JASON SHORE TREASURER 0.25
Officer Director
$0 $0 $0
DENA HEATH BOARD MEMBER 3.00
Director
$0 $0 $0
DR ASHUTOSH WECHALEKAR BOARD MEMBER 0.25
Director
$0 $0 $0
Note: Compensation data is self-reported by the organization on their Form 990. "Reportable Comp" includes salary, bonuses, and other reportable compensation from the organization and related organizations. "Other Comp" includes benefits, deferred compensation, and non-taxable benefits.

Historical Data

Year Revenue Expenses Assets Net Income
2024 No data No data No data No data
2023 $2,888,025 $2,415,059 $2,975,266 $472,966
2022 $2,260,256 $2,129,932 $2,516,230 $130,324
2021 $1,647,972 $1,682,131 $2,350,923 $-34,159
2020 $2,125,459 $1,233,948 $2,277,557 $891,511
2019 $1,697,298 $1,328,269 $1,394,467 $369,029
2018 $1,416,444 $1,659,988 $1,548,310 $-243,544
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