Is it real?
Yes. Never revoked by the IRS. Latest filing on record: FY2025. IRS ruling in Mar 2016.
IRS Pub. 78 · IRS Auto-Revocation List · IRS Business Master File
Where the money goes
71 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 add context
Who runs it and what they're paid
5 people listed on the 990; $149K paid to officers and key staff (Part VII, Section A).
Carrie Milliard’s $149K as Registry Director is at the 95th percentile of top reported officer pay among 901 $100K–1M 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 · 3 named individuals · Part VII
| Name | FY2025 | FY2024 | FY2023 | FY2020 |
|---|---|---|---|---|
| Carrie Milliard | $149,435 | $76,816 | — | — |
| Dianna Wheaton Thru Jan 2023 | — | — | $118,188 | — |
| Dianna Wheaton | — | — | — | $101,063 |
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 Ftd Disorders Registry LLC executive salaries →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
Connects people with FTD, a devastating neurodegenerative disease, to a patient registry.
Questions for Ftd Disorders Registry LLC
Your first name shows with your question. Ftd Disorders Registry LLC answers here, for everyone.
The Goals of the Registry Are to
Empower the community of caregivers, family members, and people diagnosed with Ftd - facilitate enrollment for Ftd clinical research as a centralized, international database and communication hub- inform the Ftd community on research and participation opportunities as a trusted, neutral, science-based non-profit voice- improve the…
Form 990 Part III, line 4, FY2024. The organization’s own words, as filed with the IRS. Find it at the IRS (EIN 47-3601782) · Dispute this lineFunders
Who pays for it.
From grant filings on record. Receipts are incomplete: individual donors are never listed.
Grants
By the numbers
The FY2025 990, line by line.
Download 990
| Line | Start FY25 | End FY25 |
|---|---|---|
| Cash and savingsLn 1–2 | $2.0M | $1.6M |
| Land, buildings, equipmentLn 10c | $337K | $268K |
| Total assetsLn 16 | $2.4M | $2.2M |
| LiabilitiesLn 26 | $407K | $236K |
| Net assetsLn 32 | $2.0M | $2.0M |
| Line | Total | Programs | Management | Fundraising |
|---|---|---|---|---|
| Other salaries and wagesLn 7 | $462K | $450K | $12K | |
| Pension plan contributionsLn 8 | $11K | $10K | $1K | |
| Other employee benefitsLn 9 | $53K | $47K | $6K | |
| Payroll taxesLn 10 | $36K | $33K | $3K | |
| Accounting feesLn 11c | $28K | $28K | ||
| Other fees for servicesLn 11g | $176K | $10K | $166K | |
| Advertising and promotionLn 12 | $4K | $342 | $4K | |
| Office expensesLn 13 | $1K | $1K | ||
| Information technologyLn 14 | $20K | $14K | $6K | |
| TravelLn 17 | $20K | $20K | ||
| Conferences, conventions and meetingsLn 19 | $1K | $1K | ||
| Depreciation, depletion and amortizationLn 22 | $70K | $70K | ||
| InsuranceLn 23 | $6K | $6K | ||
| Other expenses (24a–d)Ln 24 | $5K | $10 | $5K | |
| Total functional expensesLn 25 | $893K | $633K | $259K | $0 |
Filing history
| Year | Money in | Money out | In minus out | Net assets | Download |
|---|---|---|---|---|---|
| FY2025 Latest ViewingFiled with the IRS Nov 11, 2025 | $871K | $893K | −$21K | $2.0M | 990 PDF |
| FY2024Filed with the IRS Nov 13, 2024 | $1.0M | $955K | $76K | $2.0M | 990 PDF |
| FY2023Filed with the IRS Nov 14, 2023 | $1.6M | $759K | $842K | $1.9M | 990 PDF |
| FY2022 | Not on file | ||||
| FY2021 | Not on file | ||||
| FY2020Filed with the IRS Nov 10, 2021 | $544K | $748K | −$204K | $998K | 990 PDF |
Schedules filed Part IV
See the full FY2025 990
Part I · Summary $871,164 revenue, 12 lines filed
Part VI · Governance 0 of 2 board members independent, 1 to look at
Part VIII · Statement of revenue $871,164 across 6 lines filed
Part IX · Statement of functional expenses $892,503 across 14 lines filed
Part X · Balance sheet $2,218,789 assets, 11 lines filed
Part XI · Reconciliation of net assets $1,982,345 net assets at year end
Form 990 e-file FY2025 from the IRS (about our sources) · Classification, formation year and address from the IRS Business Master File
Similar organizations you could support · Compare with another nonprofit
The names, titles, and financial information shown on this page are reproduced from IRS Form 990 filings, which are public records. More
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. A filing can only be corrected by the organization filing an amended return with the IRS; the corrected information appears here at our next update.
We publish only information contained in the public IRS filing, and less than the filing contains. Our pages do not display home 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, contact the filing organization or the IRS directly.