Is it real?
Yes. Never revoked by the IRS. Latest filing on record: FY2024. IRS ruling in Mar 2015.
IRS Pub. 78 · IRS Auto-Revocation List · IRS Business Master File
Where the money goes
72 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; $62K paid to officers and key staff.
Elizabeth O'Brien’s $62K as President is at the 55th percentile of top reported officer pay among 1613 $100K–1M education 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 | FY2024 | FY2023 | FY2022 | FY2021 | FY2020 |
|---|---|---|---|---|---|
| Elizabeth O'Brien | $62,500 | $62,500 | $62,500 | $67,708 | $15,625 |
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
Funds research and educates the public about Neurofibromatosis.
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Assist in educating the public about neurofibromatosis and funding research to lead to a cure and treatment for neurofibromatosis.
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 | $968K | $869K |
| Total assetsLn 16 | $991K | $869K |
| LiabilitiesLn 26 | $61K | $69K |
| Net assetsLn 32 | $929K | $801K |
| Line | Total | Programs | Management | Fundraising |
|---|---|---|---|---|
| Grants to domestic organizationsLn 1 | $151K | $151K | ||
| Grants to domestic individualsLn 2 | $0 | $0 | ||
| Grants and assistance to foreign recipientsLn 3 | $0 | $0 | ||
| Benefits paid to or for membersLn 4 | $0 | $0 | ||
| Pay of current officers, directors and key staffLn 5 | $62K | $42K | $10K | $10K |
| Pay of disqualified personsLn 6 | $0 | $0 | $0 | $0 |
| Other salaries and wagesLn 7 | $0 | $0 | $0 | $0 |
| Pension plan contributionsLn 8 | $0 | $0 | $0 | $0 |
| Other employee benefitsLn 9 | $0 | $0 | $0 | $0 |
| Payroll taxesLn 10 | $5K | $3K | $840 | $839 |
| Management feesLn 11a | $0 | $0 | $0 | $0 |
| Legal feesLn 11b | $0 | $0 | $0 | $0 |
| Accounting feesLn 11c | $7K | $3K | $3K | |
| Lobbying feesLn 11d | $0 | $0 | $0 | $0 |
| Professional fundraising feesLn 11e | $0 | $0 | ||
| Investment management feesLn 11f | $0 | $0 | $0 | $0 |
| Other fees for servicesLn 11g | $65K | $22K | $43K | |
| Office expensesLn 13 | $10K | $4K | $4K | $3K |
| RoyaltiesLn 15 | $0 | $0 | $0 | $0 |
| OccupancyLn 16 | $0 | $0 | $0 | $0 |
| Travel and entertainment for public officialsLn 18 | $0 | $0 | $0 | $0 |
| InterestLn 20 | $0 | $0 | $0 | $0 |
| InsuranceLn 23 | $2K | $325 | $2K | |
| Other expenses (24a–d)Ln 24 | $6K | $0 | $0 | $6K |
| Total functional expensesLn 25 | $308K | $221K | $20K | $67K |
Filing history
| Year | Money in | Money out | In minus out | Net assets | Download |
|---|---|---|---|---|---|
| FY2024 Latest Viewing | $179K | $308K | −$129K | $801K | 990 PDF |
| FY2023 | $205K | $246K | −$41K | $929K | 990 PDF |
| FY2022 | $324K | $96K | $228K | $970K | 990 PDF |
| FY2021 | $138K | $105K | $33K | $742K | 990 PDF |
| FY2020 | $197K | $74K | $123K | $712K | 990 PDF |
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Schedules filed Part IV
See the full FY2024 990 (6 parts)
Part I · Summary $179,333 revenue, 12 lines filed
Part VI · Governance 7 of 8 board members independent, no flags
Part VIII · Statement of revenue $179,333 across 12 lines filed
Part IX · Statement of functional expenses $307,982 across 24 lines filed
Part X · Balance sheet $869,371 assets, 11 lines filed
Part XI · Reconciliation of net assets $800,840 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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