Is it real?
Yes. Never revoked by the IRS. Latest filing on record: FY2025. IRS ruling in Jan 2004.
IRS Pub. 78 · IRS Auto-Revocation List · IRS Business Master File
Where the money goes
74 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
3 people listed on the 990; $83K paid to officers and key staff.
Kristine Shaughnessy’s $50K as Executive Director is at the 88th percentile of top reported officer pay among 153 <$100K diseases & disorders 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 · 3 named individuals · Part VII
| Name | FY2025 | FY2024 | FY2023 | FY2022 | FY2021 |
|---|---|---|---|---|---|
| Kristine Shaughnessy | $50,160 | $79,040 | $82,080 | $79,040 | $79,040 |
| Victoria Miller | — | — | — | — | $2,348 |
| Catherine Howard | — | — | $1,250 | $2,250 | $1,287 |
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 15aNo
Programs and updates
Fund research and support families affected by Trisomy 18 diagnoses.
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Education and Support Programs
Trisomy 18's nationally-recognized program supports and educates both patient families and medical providers who treat families and children with trisomy 18 though direct service calls to support program staff, workshops, public presentations, educational materials and technology enabled peer support PROGRAMS.THE research advocacy and…
Funders
Who pays for it.
From grant filings on record. Receipts are incomplete: individual donors are never listed.
Grants
By the numbers
The FY2021 990, line by line.
Download 990
| Line | Start FY21 | End FY21 |
|---|---|---|
| Cash and savingsLn 1–2 | $44K | $54K |
| Land, buildings, equipmentLn 10c | $4K | $3K |
| Total assetsLn 16 | $50K | $65K |
| LiabilitiesLn 26 | $86K | $5K |
| Net assetsLn 32 | −$36K | $61K |
| Line | Total | Programs | Management | Fundraising |
|---|---|---|---|---|
| Pay of current officers, directors and key staffLn 5 | $81K | $64K | $783 | $17K |
| Payroll taxesLn 10 | $10K | $8K | $95 | $2K |
| Accounting feesLn 11c | $3K | $3K | ||
| Other fees for servicesLn 11g | $11K | $7K | $3K | $766 |
| Conferences, conventions and meetingsLn 19 | $412 | $412 | ||
| InterestLn 20 | $466 | $466 | ||
| Depreciation, depletion and amortizationLn 22 | $1K | $1K | ||
| InsuranceLn 23 | $1K | $1K | ||
| Other expenses (24a–d)Ln 24 | $10K | $8K | $2K | |
| All other expensesLn 24e | $2K | $190 | $2K | |
| Total functional expensesLn 25 | $119K | $89K | $11K | $19K |
Filing history
| Year | Money in | Money out | In minus out | Net assets | Download |
|---|---|---|---|---|---|
| FY2025 Latest | $90K | $85K | $5K | $61K | 990 PDF |
| FY2024 | $89K | $141K | −$52K | $56K | 990 PDF |
| FY2023 | $133K | $148K | −$15K | $108K | 990 PDF |
| FY2022 | $196K | $134K | $62K | $122K | 990 PDF |
| FY2021 Viewing | $216K | $119K | $97K | $61K | 990 PDF |
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Schedules filed Part IV
See the full FY2021 990 (4 parts)
Part VIII · Statement of revenue $215,922 across 5 lines filed
Part IX · Statement of functional expenses $119,217 across 10 lines filed
Part X · Balance sheet $65,496 assets, 10 lines filed
Part XI · Reconciliation of net assets $60,600 net assets at year end
Form 990 e-file (XML) FY2021 from the IRS · Classification, formation year and address from the IRS Business Master File
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