Is it real?
Yes. Never revoked by the IRS. Latest filing on record: FY2025. IRS ruling in Dec 2011.
IRS Pub. 78 · IRS Auto-Revocation List · IRS Business Master File
Where the money goes
75 cents of each dollar spent went to programs.
Form 990 Part IX, line 25, columns B–D. Every line is in By the numbers.
Who runs it and what they're paid
8 people listed on the 990; $88K paid to officers and key staff.
Compensation history total reportable pay by year · 2 named individuals · Part VII
| Name | FY2025 | FY2024 | FY2023 | FY2022 | FY2021 |
|---|---|---|---|---|---|
| Kristen Davis | — | $66,739 | $51,227 | $49,671 | $45,996 |
| Lauren Beauregard | $60,000 | $20,800 | — | — | — |
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 2Yes
- Top official's pay set by an independent reviewPt VI · Ln 15aYes
Programs and updates
Supports, educates, and empowers individuals affected by CLOVES syndrome.
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Provide information and resources to educate others about CLOVES Syndrome; Foster and promote a supportive community; Build and sustain a broad base of funding sources to support our mission and goals; Utilize incoming funds to provide financial assistance to those impacted by CLOVES Syndrome; Participate in and promote CLOVES Syndrome…
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Funders
Who pays for it.
From grant filings on record. Receipts are incomplete: individual donors are never listed.
Grants
By the numbers
The FY2024 990, line by line.
Download 990
| Line | Start FY24 | End FY24 |
|---|---|---|
| Cash and savingsLn 1–2 | $224K | $161K |
| Total assetsLn 16 | $231K | $168K |
| LiabilitiesLn 26 | $0 | $0 |
| Net assetsLn 32 | $231K | $168K |
| Line | Total | Programs | Management | Fundraising |
|---|---|---|---|---|
| Grants to domestic individualsLn 2 | $23K | $23K | ||
| Grants and assistance to foreign recipientsLn 3 | $16K | $16K | ||
| Pay of current officers, directors and key staffLn 5 | $86K | $60K | $26K | |
| Accounting feesLn 11c | $1K | $1K | ||
| Office expensesLn 13 | $9K | $9K | ||
| TravelLn 17 | $4K | $4K | ||
| Conferences, conventions and meetingsLn 19 | $15K | $15K | ||
| Other expenses (24a–d)Ln 24 | $39K | $26K | $9K | $4K |
| Total functional expensesLn 25 | $193K | $144K | $45K | $4K |
Filing history
| Year | Money in | Money out | In minus out | Net assets | Download |
|---|---|---|---|---|---|
| FY2025 Latest | $130K | $119K | $12K | $173K | 990 PDF |
| FY2024 Viewing | $130K | $193K | −$63K | $168K | 990 PDF |
| FY2023 | $141K | $292K | −$151K | $231K | 990 PDF |
| FY2022 | $311K | $377K | −$66K | $382K | 990 PDF |
| FY2021 | $384K | $211K | $173K | $449K | 990 PDF |
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Schedules filed Part IV
See the full FY2024 990 (4 parts)
Part VIII · Statement of revenue $129,728 across 4 lines filed
Part IX · Statement of functional expenses $192,814 across 8 lines filed
Part X · Balance sheet $168,316 assets, 7 lines filed
Part XI · Reconciliation of net assets $168,316 net assets at year end
Form 990 e-file (XML) FY2024 from the IRS · Classification, formation year and address from the IRS Business Master File
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