Amyloidosis Research Consortium Inc
- Assets
- $2.4m
- Revenue
- $1.6m
- Investments
- $0.0
- Employees
- 10
- Location
- Newton, MA
- Founding
- 08/2015
- Data as of
- 12/2021
- EIN
- 47-2589708
Organization Overview
Amyloidosis Research Consortium Inc is located in Newton, MA. The organization was established in 2015. According to its NTEE Classification (H80) the organization is classified as: Specifically Named Diseases Research, under the broad grouping of Medical Research and related organizations. As of 12/2021, Amyloidosis Research Consortium Inc employed 10 individuals. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Amyloidosis Research Consortium Inc is a 501(c)(3) and as such, is described as a "Charitable or Religous organization or a private foundation" by the IRS.
For the year ending 12/2021, Amyloidosis Research Consortium Inc generated $1.6m in total revenue. This organization has experienced exceptional growth, as over the past 7 years, it has increased revenue by an average of 11.9% each year . All expenses for the organization totaled $1.7m during the year ending 12/2021. You can explore the organizations financials more deeply in the financial statements section below.
Form
990
Mission & Program ActivityExcerpts From the 990 Filing
TAX YEAR
2021
Describe the Organization's Mission:
Part 3 - Line 1
ACCELERATING THE DEVELOPMENT OF ADVANCED DIAGNOSTIC TOOLS AND EFFECTIVE TREATMENTS FOR SYSTEMIC AMYLOIDOSIS THROUGH COLLABORATION AND INNOVATION.
Describe the Organization's Program Activity:
Part 3 - Line 4a
RESEARCH PROGRAMSARC 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 TRIALS AND CLINICAL PRACTICE.
AWARENESS, EDUCATIONAL PROGRAMS AND ADVOCACYARC'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
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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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Isabelle Lousada CEO & Clerk | Trustee | 40 | $142,005 |
Kristen Hsu Exec. Dir. Of Clinical Research | 40 | $120,967 | |
Robyn Himick Assoc. Dir. Of Clinical Research | 40 | $110,449 | |
Sarah Cairns-Smith President/board Chair | OfficerTrustee | 0.5 | $0 |
Jason Shore Treasurer | OfficerTrustee | 0.5 | $0 |
Dr Giampaolo Merlini Board Member | Trustee | 0.25 | $0 |
Outside Vendors & Contractors
| Vendor Name (Service) | Service Year | Compensation |
|---|---|---|
Quality Metric Incorporated Llc Program Consultant | 12/30/21 | $187,578 |
Analysis Group Program Consultant | 12/30/21 | $160,000 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Federated campaigns | $0 |
| Membership dues | $0 |
| Fundraising events | $0 |
| Related organizations | $0 |
| Government grants | $118,220 |
| All other contributions, gifts, grants, and similar amounts not included above | $1,354,119 |
| Noncash contributions included in lines 1a–1f | $0 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $1,472,339 |
| Total Program Service Revenue | $2,258 |
| Investment income | $724 |
| Tax Exempt Bond Proceeds | $0 |
| Royalties | $164,964 |
| Net Rental Income | $7,687 |
| Net Gain/Loss on Asset Sales | $0 |
| Net Income from Fundraising Events | $0 |
| Net Income from Gaming Activities | $0 |
| Net Income from Sales of Inventory | $0 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $1,647,972 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $75,640 |
| Grants and other assistance to domestic individuals. | $0 |
| Grants and other assistance to Foreign Orgs/Individuals | $0 |
| Benefits paid to or for members | $0 |
| Compensation of current officers, directors, key employees. | $142,428 |
| Compensation of current officers, directors, key employees. | $23,738 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $656,716 |
| Pension plan accruals and contributions | $0 |
| Other employee benefits | $19,345 |
| Payroll taxes | $69,559 |
| Fees for services: Management | $0 |
| Fees for services: Legal | $12,860 |
| Fees for services: Accounting | $25,650 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $0 |
| Fees for services: Other | $406,185 |
| Advertising and promotion | $6,610 |
| Office expenses | $5,103 |
| Information technology | $73,209 |
| Royalties | $0 |
| Occupancy | $46,411 |
| Travel | $1,997 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $76,585 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $24,056 |
| Insurance | $4,062 |
| All other expenses | $0 |
| Total functional expenses | $1,682,131 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $474,601 |
| Savings and temporary cash investments | $1,823,368 |
| Pledges and grants receivable | $7,963 |
| Accounts receivable, net | $0 |
| Loans from Officers, Directors, or Controlling Persons | $0 |
| Loans from Disqualified Persons | $0 |
| Notes and loans receivable | $0 |
| Inventories for sale or use | $0 |
| Prepaid expenses and deferred charges | $4,080 |
| Net Land, buildings, and equipment | $460 |
| Investments—publicly traded securities | $7,235 |
| Investments—other securities | $0 |
| Investments—program-related | $0 |
| Intangible assets | $17,333 |
| Other assets | $15,883 |
| Total assets | $2,350,923 |
| Accounts payable and accrued expenses | $154,981 |
| Grants payable | $0 |
| Deferred revenue | $0 |
| Tax-exempt bond liabilities | $0 |
| Escrow or custodial account liability | $0 |
| Loans and other payables to any current Officer, Director, or Controlling Person | $0 |
| Secured mortgages and notes payable | $0 |
| Unsecured mortgages and notes payable | $0 |
| Other liabilities | $0 |
| Total liabilities | $154,981 |
| Net assets without donor restrictions | $1,231,465 |
| Net assets with donor restrictions | $964,477 |
| Capital stock or trust principal, or current funds | $0 |
| Paid-in or capital surplus, or land, building, or equipment fund | $0 |
| Retained earnings, endowment, accumulated income, or other funds | $0 |
| Total liabilities and net assets/fund balances | $2,350,923 |
Grants Recieved
Over the last fiscal year, we have identified 6 grants that Amyloidosis Research Consortium Inc has recieved totaling $71,510.
| Awarding Organization | Amount |
|---|---|
Chip Miller Charitable Foundation Carlisle, PA PURPOSE: PROGRAM SPECIFIC SUPPORT | $55,000 |
Schwab Charitable Fund San Francisco, CA PURPOSE: HEALTH | $10,250 |
Lavonne Horowitz Charitable Foundation Inc Waban, MA PURPOSE: CHARITY | $5,000 |
Amazonsmile Foundation Seattle, WA PURPOSE: GENERAL SUPPORT | $692 |
Pfizer Foundation Inc New York, NY PURPOSE: MATCHING GIFTS | $368 |
Pfizer Foundation Inc New York, NY PURPOSE: MATCHING GIFTS | $200 |
Peer Organizations
| Organization Name | Assets | Revenue |
|---|---|---|
Als Therapy Development Foundation Inc Watertown, MA | $19,047,011 | $12,370,651 |
Jeffrey Modell Foundation Inc New York, NY | $36,072,018 | $6,146,213 |
Rothberg Institute Inc Guilford, CT | $0 | $50,949 |
Silent Spring Institute Inc Newton, MA | $4,846,950 | $4,731,717 |
Lupus Clinical Trials Consortium Katherine M Snider President Garden City, NY | $502,663 | $1,883,684 |
Amyloidosis Research Consortium Inc Newton, MA | $2,350,923 | $1,647,972 |
Northeast Als Consortium Inc Boston, MA | $897,067 | $886,426 |
Angel Fund Inc Wakefield, MA | $2,272,939 | $566,086 |
Aurum Institute Usa New York, NY | $145,199 | $368,316 |
Central New York Lyme And Tick-Borne Disease Alliance Inc Manlius, NY | $284,340 | $280,190 |
Seneca Diabetes Foundation Irving, NY | $3,568,053 | $281,594 |
Society Of Surgery Of The Alimentary Tract Foundation Beverly, MA | $4,421,266 | $336,018 |