Is it real?
Yes. Never revoked by the IRS. Latest filing on record: FY2024. IRS ruling in Aug 2015.
IRS Pub. 78 · IRS Auto-Revocation List · IRS Business Master File
Where the money goes
64 cents of each dollar spent went to programs.
Form 990 Part IX, line 25, columns B–D. Every line is in By the numbers.
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Who runs it and what they're paid
7 people listed on the 990; $178K paid to officers and key staff.
Isabelle Lousada’s $175K as President/CEO & Clerk is at the 49th percentile of top reported officer pay among 360 $1–10M medical research nonprofits. Peer set: organizations in the same NTEE major field of work and revenue-size band, compared on each org’s own highest-paid officer/key-employee, from Form 990 Part VII / 990-PF Part VIII. Descriptive placement, not a verdict on whether the pay is appropriate.
Compensation history total reportable pay by year · 4 named individuals · Part VII
| Name | FY2024 | FY2023 | FY2022 | FY2021 | FY2020 |
|---|---|---|---|---|---|
| Isabelle Lousada | $175,000 | $178,365 | $174,102 | $142,005 | $137,869 |
| Vanessa Boulanger | — | — | $131,888 | — | — |
| Kristen Hsu | — | — | $125,022 | $120,967 | — |
| Robyn Himick | — | — | — | $110,449 | $107,231 |
Total reportable compensation (Form 990 Part VII column D / Schedule J column E) by filing year, matched by name within this organization. The Schedule J base / bonus / deferred breakdown is not parsed into this dataset.
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Questions the 990 asks
The form asks each of these directly. These are the filed answers.
- Family or business ties among officersPt VI · Ln 2No
- Top official's pay set by an independent reviewPt VI · Ln 15aYes
Programs and updates
Speeds up creating better tests and treatments for systemic amyloidosis.
Questions for Amyloidosis Research Consortium INC
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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.
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…
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.
Funders
Who pays for it.
From grant filings on record. Receipts are incomplete: individual donors are never listed.
Grants
By the numbers
The FY2023 990, line by line.
Download 990
| Line | Start FY23 | End FY23 |
|---|---|---|
| Cash and savingsLn 1–2 | $799K | $835K |
| InvestmentsLn 11–13 | $1.6M | $2.0M |
| Land, buildings, equipmentLn 10c | $11K | $9K |
| Total assetsLn 16 | $2.5M | $3.0M |
| LiabilitiesLn 26 | $301K | $227K |
| Net assetsLn 32 | $2.2M | $2.7M |
| Line | Total | Programs | Management | Fundraising |
|---|---|---|---|---|
| Pay of current officers, directors and key staffLn 5 | $178K | $119K | $30K | $30K |
| Other salaries and wagesLn 7 | $1.1M | $731K | $31K | $368K |
| Other employee benefitsLn 9 | $70K | $46K | $2K | $22K |
| Payroll taxesLn 10 | $120K | $69K | $16K | $34K |
| Legal feesLn 11b | $135 | $135 | ||
| Accounting feesLn 11c | $106K | $106K | ||
| Other fees for servicesLn 11g | $410K | $366K | $33K | $11K |
| Advertising and promotionLn 12 | $33K | $14K | $2K | $16K |
| Office expensesLn 13 | $15K | $4K | $8K | $3K |
| OccupancyLn 16 | $48K | $48K | ||
| TravelLn 17 | $143K | $112K | $9K | $22K |
| Conferences, conventions and meetingsLn 19 | $15K | $14K | $513 | |
| Depreciation, depletion and amortizationLn 22 | $14K | $14K | ||
| InsuranceLn 23 | $6K | $1K | $5K | |
| Other expenses (24a–d)Ln 24 | $126K | $72K | $38K | $17K |
| All other expensesLn 24e | $608 | $113 | $495 | |
| Total functional expensesLn 25 | $2.4M | $1.5M | $342K | $525K |
Filing history
| Year | Money in | Money out | In minus out | Net assets | Download |
|---|---|---|---|---|---|
| FY2024 Latest | $3.4M | $3.0M | $351K | $3.1M | 990 PDF |
| FY2023 Viewing | $2.9M | $2.4M | $473K | $2.7M | 990 PDF |
| FY2022 | $2.3M | $2.1M | $130K | $2.2M | 990 PDF |
| FY2021 | $1.6M | $1.7M | −$34K | $2.2M | 990 PDF |
| FY2020 | $2.1M | $1.2M | $892K | $2.0M | 990 PDF |
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Schedules filed Part IV
See the full FY2023 990 (6 parts)
Part I · Summary $2,888,025 revenue, 12 lines filed
Part VI · Governance 6 of 7 board members independent, no flags
Part VIII · Statement of revenue $2,888,025 across 7 lines filed
Part IX · Statement of functional expenses $2,415,059 across 16 lines filed
Part X · Balance sheet $2,975,266 assets, 13 lines filed
Part XI · Reconciliation of net assets $2,748,763 net assets at year end
Form 990 e-file (XML) FY2023 from the IRS · Classification, formation year and address from the IRS Business Master File
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