Is it real?
Yes. Never revoked by the IRS. Latest filing on record: FY2025. IRS ruling in Mar 2019.
IRS Pub. 78 · IRS Auto-Revocation List · IRS Business Master File
Where the money goes
92 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
5 people listed on the 990.
Kara Berasi’s $36K as CEO is at the 23rd 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 | FY2022 | FY2021 |
|---|---|---|---|---|---|
| Kara Berasi | $36,000 | $36,000 | — | — | — |
| Chevese Turner | — | — | $36,000 | $3,000 | — |
| Deanna Darlington | — | — | — | — | $3,000 |
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
Educates and assists stakeholders with rare conditions in self-advocacy.
Questions for Haystack Project INC
Your first name shows with your question. Haystack Project INC answers here, for everyone.
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Engaged a professional consulting firm to draft seven comment letters in response to federal agency proposals which impacted research, development, and patient access to treatments critical to rare and ultra rare conditions.
Engaged a third party public policy consultant to provide monthly & ad hoc calls with patient groups. Calls were focused on identifying issues related to systematic barriers to access and treatments.
The organization hired a consulting firm to draft a series of reports on patient oriented value, which gives health care providers deeper insights into the patients' perspectives and perception of value.
Funders
Who pays for it.
From grant filings on record. Receipts are incomplete: individual donors are never listed.
Grants
By the numbers
The FY2020 990, line by line.
Download 990
| Line | Start FY20 | End FY20 |
|---|---|---|
| Cash and savingsLn 1–2 | $4K | $169K |
| Total assetsLn 16 | $4K | $169K |
| LiabilitiesLn 26 | $0 | $0 |
| Net assetsLn 32 | $4K | $169K |
| Line | Total | Programs | Management | Fundraising |
|---|---|---|---|---|
| Management feesLn 11a | $94K | $80K | $14K | |
| Accounting feesLn 11c | $400 | $400 | ||
| Lobbying feesLn 11d | $10K | $10K | ||
| Other fees for servicesLn 11g | $1K | $500 | $529 | |
| Advertising and promotionLn 12 | $748 | $748 | ||
| Information technologyLn 14 | $2K | $2K | ||
| InsuranceLn 23 | $629 | $629 | ||
| Other expenses (24a–d)Ln 24 | $118K | $118K | $163 | |
| Total functional expensesLn 25 | $227K | $208K | $19K | $0 |
Filing history
| Year | Money in | Money out | In minus out | Net assets | Download |
|---|---|---|---|---|---|
| FY2025 Latest | $448K | $522K | −$74K | $328K | 990 PDF |
| FY2024 | $759K | $526K | $233K | $402K | 990 PDF |
| FY2023 | $227K | $435K | −$208K | $175K | 990 PDF |
| FY2022 | $476K | $381K | $95K | $383K | 990 PDF |
| FY2021 | $483K | $364K | $119K | $287K | 990 PDF |
| FY2020 Viewing | $392K | $227K | $164K | $169K | 990 PDF |
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Schedules filed Part IV
See the full FY2020 990 (6 parts)
Part I · Summary $391,539 revenue, 12 lines filed
Part VI · Governance 5 of 5 board members independent, 2 to look at
Part VIII · Statement of revenue $391,539 across 4 lines filed
Part IX · Statement of functional expenses $227,161 across 8 lines filed
Part X · Balance sheet $168,615 assets, 5 lines filed
Part XI · Reconciliation of net assets $168,615 net assets at year end
Form 990 e-file (XML) FY2020 from the IRS · Classification, formation year and address from the IRS Business Master File
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