Is it real?
Yes. Never revoked by the IRS. Latest filing on record: FY2025. IRS ruling in Sep 1994.
IRS Pub. 78 · IRS Auto-Revocation List · IRS Business Master File
Where the money goes
92 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
9 people listed on the 990.
Jennifer Whitman’s $95K as Executive Director is at the 27th percentile of top reported officer pay among 1690 $1–10M philanthropy & grantmaking 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 · 1 named individual · Part VII
| Name | FY2025 | FY2024 | FY2023 | FY2022 |
|---|---|---|---|---|
| Jennifer Whitman | $95,392 | $90,018 | $91,410 | $83,350 |
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 15aNo
Programs and updates
Supports individuals with Moebius syndrome, raises awareness, and advocates for research.
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Advocate for scientific research to advance the diagnosis and treatment of moebius syndrome and its associated conditions.
Provide information and support to individuals with moebius syndrome and their families. The newsletter and biannual conference are the primary means of accomplishing this goal.
Promote greater awareness and understanding of moebius syndrome. The newsletter and biannual conference are the primary means of accomplishing this goal.
Funders
Who pays for it.
From grant filings on record. Receipts are incomplete: individual donors are never listed.
Grants
By the numbers
The FY2020 990, line by line.
Download 990
| Line | Start FY20 | End FY20 |
|---|---|---|
| Cash and savingsLn 1–2 | $115K | $35K |
| InvestmentsLn 11–13 | $1.4M | $1.6M |
| Total assetsLn 16 | $1.8M | $1.6M |
| LiabilitiesLn 26 | $191K | $173K |
| Net assetsLn 32 | $1.7M | $1.4M |
| Line | Total | Programs | Management | Fundraising |
|---|---|---|---|---|
| Grants to domestic organizationsLn 1 | $184K | $184K | ||
| Grants to domestic individualsLn 2 | $10K | $10K | ||
| Grants and assistance to foreign recipientsLn 3 | $241K | $241K | ||
| Management feesLn 11a | $82K | $64K | $13K | $5K |
| Accounting feesLn 11c | $14K | $14K | ||
| Advertising and promotionLn 12 | $26K | $26K | ||
| Office expensesLn 13 | $24K | $11K | $13K | |
| Information technologyLn 14 | $6K | $6K | ||
| TravelLn 17 | $1K | $1K | ||
| Conferences, conventions and meetingsLn 19 | $5K | $5K | ||
| InsuranceLn 23 | $1K | $1K | ||
| Other expenses (24a–d)Ln 24 | $5K | $2K | $3K | |
| Total functional expensesLn 25 | $600K | $551K | $44K | $5K |
Filing history
| Year | Money in | Money out | In minus out | Net assets | Download |
|---|---|---|---|---|---|
| FY2025 Latest | $1.1M | $760K | $312K | $2.4M | 990 PDF |
| FY2024 | $338K | $283K | $55K | $2.0M | 990 PDF |
| FY2023 | $458K | $599K | −$141K | $1.8M | 990 PDF |
| FY2022 | $358K | $520K | −$161K | $1.9M | 990 PDF |
| FY2021 | $1.0M | $184K | $854K | $2.3M | 990 PDF |
| FY2020 Viewing | $104K | $600K | −$496K | $1.4M | 990 PDF |
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Schedules filed Part IV
See the full FY2020 990 (6 parts)
Part I · Summary $104,435 revenue, 12 lines filed
Part VI · Governance 9 of 9 board members independent, 3 to look at
Part VIII · Statement of revenue $104,435 across 5 lines filed
Part IX · Statement of functional expenses $600,241 across 12 lines filed
Part X · Balance sheet $1,589,005 assets, 11 lines filed
Part XI · Reconciliation of net assets $1,415,616 net assets at year end
Form 990 e-file (XML) FY2020 from the IRS · Classification, formation year and address from the IRS Business Master File
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