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Nonprofiteer
← AMYLOIDOSIS RESEARCH CONSORTIUM INC

Form 990 for tax year 2023

Filed by AMYLOIDOSIS RESEARCH CONSORTIUM INC.

Totals

Total revenue
$2,888,025
Total expenses
$2,415,059
Contributions and grants received
$2,702,741
Grants paid
$0
Program service revenue
$1,525
Investment income
$54,751
Other revenue
$129,008
Total assets, end of year
$2,975,266
Total liabilities, end of year
$226,503
Net assets or fund balances, end of year
$2,748,763
Program services expenses (Part IX)
$1,548,608
Management and general expenses
$341,679
Fundraising expenses
$524,772
Program service expenses (Part III)
$1,548,608

Program services were 64.1% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

Line items

Every line the filer filed in Parts VIII, IX and X, as filed and in filed order. Blank columns are left out, and the lines are not forced to add up to the totals above.

Revenue

Part VIII, the statement of revenue.

  • 1f · All other contributions, gifts and grants

    $2,702,741

  • 2a · Program service revenue: HONORARIUM AND CONSULT

    total $1,525 · related or exempt $1,525

  • 3 · Investment income

    total $54,751 · excluded $54,751

  • 5 · Royalties

    total $46,942 · related or exempt $46,942

  • 11a · Other revenue: OTHER MISCELLANEOUS IN

    total $82,066 · related or exempt $82,066

  • 11e · Other revenue, total

    $82,066

Functional expenses

Part IX, the statement of functional expenses.

  • 5 · Compensation of officers, directors and key employees

    total $178,365 · program services $118,909 · management and general $29,728 · fundraising $29,728

  • 7 · Other salaries and wages

    total $1,130,531 · program services $730,856 · management and general $31,435 · fundraising $368,240

  • 9 · Other employee benefits

    total $69,521 · program services $45,985 · management and general $1,755 · fundraising $21,781

  • 10 · Payroll taxes

    total $119,545 · program services $69,221 · management and general $16,073 · fundraising $34,251

  • 11b · Fees: legal

    total $135 · management and general $135

  • 11c · Fees: accounting

    total $105,936 · management and general $105,936

  • 11g · Fees: other

    total $409,911 · program services $366,469 · management and general $32,623 · fundraising $10,819

  • 12 · Advertising and promotion

    total $32,788 · program services $14,427 · management and general $2,452 · fundraising $15,909

  • 13 · Office expenses

    total $14,770 · program services $3,642 · management and general $7,655 · fundraising $3,473

  • 16 · Occupancy

    total $47,519 · management and general $47,519

  • 17 · Travel

    total $143,438 · program services $112,104 · management and general $8,992 · fundraising $22,342

  • 19 · Conferences, conventions and meetings

    total $14,852 · program services $14,339 · fundraising $513

  • 22 · Depreciation, depletion and amortization

    total $14,324 · management and general $14,324

  • 23 · Insurance

    total $6,334 · program services $1,044 · management and general $5,290

  • 24a · Other expenses: PROGRAM MATERIALS

    total $65,015 · program services $59,490 · fundraising $5,525

  • 24b · Other expenses: WEBSITE AND INTERNET

    total $53,132 · program services $8,802 · management and general $33,278 · fundraising $11,052

  • 24c · Other expenses: DUES, FEES, AND LICESNE

    total $6,078 · program services $2,029 · management and general $4,049

  • 24d · Other expenses: TELEPHONE

    total $2,257 · program services $1,291 · management and general $322 · fundraising $644

  • 24e · All other expenses

    total $608 · management and general $113 · fundraising $495

Balance sheet

Part X, book values.

  • 1 · Cash, non-interest-bearing

    beginning of year $572,485 · end of year $269,622

  • 2 · Savings and temporary cash investments

    beginning of year $226,338 · end of year $565,116

  • 3 · Pledges and grants receivable

    beginning of year $38,138 · end of year $64,903

  • 9 · Prepaid expenses and deferred charges

    beginning of year $25,735 · end of year $24,958

  • 10a · Land, buildings and equipment: cost or other basis

    $20,721

  • 10b · Land, buildings and equipment: accumulated depreciation

    $11,797

  • 10c · Land, buildings and equipment, net

    beginning of year $11,026 · end of year $8,924

  • 11 · Investments: publicly traded securities

    beginning of year $1,633,842 · end of year $2,041,743

  • 14 · Intangible assets

    beginning of year $8,666

  • 17 · Accounts payable and accrued expenses

    beginning of year $300,880 · end of year $226,503

  • 27 · Net assets without donor restrictions

    beginning of year $1,504,656 · end of year $1,925,811

  • 28 · Net assets with donor restrictions

    beginning of year $710,694 · end of year $822,952

Mission and programs · 2023

Mission

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

  • 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.

    Expenses $313,283

  • 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.

    Expenses $524,965

  • 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.

    Expenses $357,241

  • Expenses $353,119 · Revenue $130,533

As filed on the 2023 return. The filer continues this part on Schedule O, which is not shown here.

Listed in Part VII

  • ISABELLE LOUSADA

    PRESIDENT/CEO & SECRETARY

    Total calculated
    $178,365
    From this org
    $178,365
    From related orgs
    $0
    Other
    $0
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $178,365
    Bonus
    $0
    Other
    $0
    Deferred
    $0
    Nontaxable benefits
    $0
    Filer's total
    $178,365

  • SARAH CAIRNS-SMITH

    CHAIR

    Total calculated
    $0
    Hours/week
    0.25

  • RICK NATHANSON

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    0.25

  • DR RAYMOND COMENZO

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    0.25

  • JASON SHORE

    TREASURER

    Total calculated
    $0
    Hours/week
    0.25

  • DENA HEATH

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    3

  • DR ASHUTOSH WECHALEKAR

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    0.25

Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those. A Schedule J breakdown is as filed: base pay, bonus, other, deferred compensation and nontaxable benefits from this organization, with any from related organizations beside each, and the filer's own total. It is shown with the Part VII listing of the same name on the same return. The form gives no key between the two, so that pairing is ours, and is marked matched by us.

Schedule J

Answered yes

None.

Answered no

  • 4a · Severance or change-of-control payment
  • 4b · Supplemental nonqualified retirement plan
  • 4c · Equity-based compensation arrangement
  • 5a · Pay contingent on this organization's revenues
  • 5b · Pay contingent on a related organization's revenues
  • 6a · Pay contingent on this organization's net earnings
  • 6b · Pay contingent on a related organization's net earnings
  • 7 · Other non-fixed payments
  • 8 · Paid under the initial-contract exception

Part I's answers as filed. A line not listed was left unanswered; on lines 1a and 3 that means the box was not checked.

Grants on this return

No itemized grants to organizations on this return.

Provenance

Return type
form_990
Tax year
2023
Filed
29 October 2024
IRS schema version
2023v5.1
Source object
202423129349300612

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