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
52 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
11 people listed on the 990; $90K paid to officers and key staff.
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.
Questions for Moebius Syndrome Foundation
Your first name shows with your question. Moebius Syndrome Foundation answers here, for everyone.
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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.
Advocate for scientific research to advance the diagnosis and treatment of Moebius syndrome and its associated conditions.
To provide college scholarships to students with Moebius Syndrome.
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 | $38K | $71K |
| InvestmentsLn 11–13 | $1.8M | $1.9M |
| Total assetsLn 16 | $1.8M | $2.0M |
| LiabilitiesLn 26 | $3K | $8K |
| Net assetsLn 32 | $1.8M | $2.0M |
| Line | Total | Programs | Management | Fundraising |
|---|---|---|---|---|
| Grants to domestic organizationsLn 1 | $21K | $21K | ||
| Grants to domestic individualsLn 2 | $1K | $1K | ||
| Pay of current officers, directors and key staffLn 5 | $94K | $38K | $52K | $5K |
| Other salaries and wagesLn 7 | $30K | $30K | ||
| Payroll taxesLn 10 | $11K | $6K | $5K | $422 |
| Legal feesLn 11b | $2K | $2K | ||
| Accounting feesLn 11c | $13K | $13K | ||
| Investment management feesLn 11f | $14K | $14K | ||
| Other fees for servicesLn 11g | $17K | $8K | $9K | |
| Advertising and promotionLn 12 | $18K | $1K | $4K | $13K |
| Office expensesLn 13 | $7K | $2K | $5K | |
| TravelLn 17 | $16K | $10K | $6K | |
| Conferences, conventions and meetingsLn 19 | $7K | $7K | ||
| InsuranceLn 23 | $718 | $113 | $605 | |
| Other expenses (24a–d)Ln 24 | $31K | $30K | $1K | |
| Total functional expensesLn 25 | $283K | $146K | $119K | $18K |
Filing history
| Year | Money in | Money out | In minus out | Net assets | Download |
|---|---|---|---|---|---|
| FY2025 Latest | $1.1M | $760K | $312K | $2.4M | 990 PDF |
| FY2024 Viewing | $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 | $104K | $600K | −$496K | $1.4M | 990 PDF |
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Schedules filed Part IV
See the full FY2024 990 (6 parts)
Part I · Summary $338,157 revenue, 12 lines filed
Part VI · Governance 9 of 9 board members independent, 3 to look at
Part VIII · Statement of revenue $338,157 across 6 lines filed
Part IX · Statement of functional expenses $283,083 across 15 lines filed
Part X · Balance sheet $1,978,268 assets, 10 lines filed
Part XI · Reconciliation of net assets $1,970,249 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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