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
89 cents of each dollar spent went to programs.
Form 990 Part IX, line 25, columns B–D. Every line is in By the numbers.
Something off? Claim to fix it
Who runs it and what they're paid
12 people listed on the 990; $121K 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
Something off? Claim to fix it
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.
Know this org? Add your story
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.
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.
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.
Funders
Who pays for it.
From grant filings on record. Receipts are incomplete: individual donors are never listed.
Grants
By the numbers
The FY2023 990, line by line.
Download 990
| Line | Start FY23 | End FY23 |
|---|---|---|
| Cash and savingsLn 1–2 | $773K | $1.1M |
| InvestmentsLn 11–13 | $3.1M | $3.3M |
| Land, buildings, equipmentLn 10c | $0 | $0 |
| Total assetsLn 16 | $4.0M | $4.5M |
| LiabilitiesLn 26 | $191K | $156K |
| Net assetsLn 32 | $3.8M | $4.4M |
| Line | Total | Programs | Management | Fundraising |
|---|---|---|---|---|
| Grants to domestic individualsLn 2 | $45K | $45K | ||
| Other salaries and wagesLn 7 | $506K | $458K | $7K | $41K |
| Pension plan contributionsLn 8 | $9K | $9K | $134 | $768 |
| Other employee benefitsLn 9 | $4K | $4K | $56 | $318 |
| Payroll taxesLn 10 | $40K | $36K | $565 | $3K |
| Legal feesLn 11b | $1K | $840 | $10 | $174 |
| Accounting feesLn 11c | $48K | $39K | $480 | $8K |
| Investment management feesLn 11f | $10K | $9K | $105 | $2K |
| Other fees for servicesLn 11g | $64K | $52K | $641 | $11K |
| Advertising and promotionLn 12 | $42K | $36K | $844 | $5K |
| Office expensesLn 13 | $29K | $24K | $289 | $5K |
| OccupancyLn 16 | $10K | $8K | $75 | $2K |
| InsuranceLn 23 | $9K | $8K | $92 | $2K |
| Other expenses (24a–d)Ln 24 | $247K | $219K | $4K | $23K |
| All other expensesLn 24e | $15K | $14K | $115 | $1K |
| Total functional expensesLn 25 | $1.1M | $960K | $15K | $105K |
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 | $1.2M | $1.2M | $26K | $4.7M | 990 PDF |
| FY2023 Viewing | $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 |
More to add? Claim this org
Schedules filed Part IV
See the full FY2023 990 (6 parts)
Part I · Summary $1,161,405 revenue, 12 lines filed
Part VI · Governance 11 of 11 board members independent, no flags
Part VIII · Statement of revenue $1,161,405 across 10 lines filed
Part IX · Statement of functional expenses $1,079,785 across 15 lines filed
Part X · Balance sheet $4,529,323 assets, 16 lines filed
Part XI · Reconciliation of net assets $4,372,914 net assets at year end
Form 990 e-file (XML) FY2023 from the IRS · Classification, formation year and address from the IRS Business Master File
Similar organizations you could support · Compare with another nonprofit
Names, privacy, and removal requests More
The names, titles, and compensation shown on this page are reproduced from IRS Form 990 filings, which are public records.
Philanthropy.org does not alter the content of those filings. All information appears exactly as reported by the filing organization for the tax year shown.
We publish only information contained in the public IRS filing — and less than the filing contains. Our profile pages do not display street addresses, telephone numbers, personal email addresses, or other personal contact information, even where the filing includes them.
Many people share the same name. A name shown on this page reflects only what one organization reported in one IRS filing for one tax year. It should not be interpreted as identifying any other individual with the same or a similar name.
If you are no longer affiliated with the organization, your name will generally stop appearing in future IRS filings once the organization no longer reports you. Pages for tax years in which you were reported remain published because those filings remain part of the public record.
Philanthropy.org does not alter or remove IRS filing records. Removing a page from this website would not remove the underlying IRS filing, which remains publicly available from the IRS and other publishers of the same information.
If you believe the IRS filing itself is inaccurate, corrections must be made by the filing organization or the IRS directly.
Your org? Add context
Made it to the end? Claim this org