Is it real?
Yes. Never revoked by the IRS. Latest filing on record: FY2025. IRS ruling in Jun 1983.
IRS Pub. 78 · IRS Auto-Revocation List · IRS Business Master File
Where the money goes
87 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
14 people listed on the 990; $128K paid to officers and key staff.
Mary Fete’s $118K as Executive Director is at the 33rd percentile of top reported officer pay among 733 $1–10M 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 · 2 named individuals · Part VII
| Name | FY2025 | FY2024 | FY2023 | FY2022 | FY2021 |
|---|---|---|---|---|---|
| Mary Fete | $118,000 | $128,350 | $121,124 | $118,124 | — |
| Timothy Mickelson | — | — | — | $113,461 | $100,271 |
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.
See National Foundation for Ectodermal Dysplasias executive salaries →On this list? Claim this org
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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
Connects and educates people affected by ectodermal dysplasias, supporting them and funding research.
Questions for National Foundation for Ectodermal Dysplasias
Your first name shows with your question. National Foundation for Ectodermal Dysplasias answers here, for everyone.
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Support
Nfed publishes high quality information to provide families with knowledge that will increase their quality of life. Information is shared through the first connect program, a web site, MEDICAL/DENTAL guide series, and conferences.
Research
Nfed's scientific advisory council oversees the nfed's research initiatives, aimed to improve the health and quality of life of affected individuals by finding management solutions and, eventually, finding cures for ectodermal dysplasias.
Treatment
Nfed's patient care council, comprised of medical and dental experts, oversees the nfed's initiatives to improve treatment of ectodermal dysplasias. The nfed teaches care providers how to diagnose and treat the rare disorders through professional symposia and grand rounds at universities.
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 | $1.1M | $992K |
| InvestmentsLn 11–13 | $3.3M | $3.7M |
| Land, buildings, equipmentLn 10c | $0 | $0 |
| Total assetsLn 16 | $4.5M | $4.8M |
| LiabilitiesLn 26 | $156K | $98K |
| Net assetsLn 32 | $4.4M | $4.7M |
| Line | Total | Programs | Management | Fundraising |
|---|---|---|---|---|
| Grants to domestic individualsLn 2 | $14K | $14K | ||
| Other salaries and wagesLn 7 | $572K | $513K | $8K | $51K |
| Pension plan contributionsLn 8 | $11K | $9K | $146 | $946 |
| Other employee benefitsLn 9 | $6K | $6K | $88 | $570 |
| Payroll taxesLn 10 | $40K | $36K | $556 | $4K |
| Legal feesLn 11b | $1K | $840 | $10 | $174 |
| Accounting feesLn 11c | $55K | $45K | $553 | $9K |
| Investment management feesLn 11f | $13K | $10K | $128 | $2K |
| Other fees for servicesLn 11g | $43K | $35K | $431 | $7K |
| Advertising and promotionLn 12 | $18K | $15K | $359 | $2K |
| Office expensesLn 13 | $53K | $31K | $16K | $6K |
| OccupancyLn 16 | $9K | $7K | $89 | $2K |
| InsuranceLn 23 | $7K | $6K | $73 | $1K |
| Other expenses (24a–d)Ln 24 | $324K | $286K | $6K | $32K |
| All other expensesLn 24e | $37K | $32K | $304 | $5K |
| Total functional expensesLn 25 | $1.2M | $1.0M | $33K | $123K |
Filing history
| Year | Money in | Money out | In minus out | Net assets | Download |
|---|---|---|---|---|---|
| FY2025 Latest | $1.6M | $1.6M | $88K | $4.9M | 990 PDF |
| FY2024 Viewing | $1.2M | $1.2M | $26K | $4.7M | 990 PDF |
| FY2023 | $1.2M | $1.1M | $82K | $4.4M | 990 PDF |
| FY2022 | $1.5M | $1.1M | $409K | $3.8M | 990 PDF |
| FY2021 | $2.0M | $885K | $1.1M | $4.3M | 990 PDF |
| FY2020 | $996K | $732K | $264K | $3.1M | 990 PDF |
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Schedules filed Part IV
See the full FY2024 990 (6 parts)
Part I · Summary $1,229,652 revenue, 12 lines filed
Part VI · Governance 13 of 13 board members independent, no flags
Part VIII · Statement of revenue $1,229,652 across 10 lines filed
Part IX · Statement of functional expenses $1,203,383 across 15 lines filed
Part X · Balance sheet $4,790,999 assets, 16 lines filed
Part XI · Reconciliation of net assets $4,692,677 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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