Is it real?
Yes. Never revoked by the IRS. Latest filing on record: FY2024. IRS ruling in May 2004.
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
7 people listed on the 990; $185K paid to officers and key staff.
Michele Manion’s $185K as Exec Dir, PR is at the 53rd percentile of top reported officer pay among 360 $1–10M medical research 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 | FY2024 | FY2023 | FY2022 | FY2021 | FY2020 |
|---|---|---|---|---|---|
| Michele Manion | $185,000 | $168,000 | $155,000 | $149,000 | $112,000 |
| Lynn Ehrne | — | $58,341 | $56,800 | $54,750 | $46,020 |
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
Fund research, accelerate diagnosis, and improve health for those with Primary Ciliary Dyskinesia.
Questions for Pcd KS Foundation
Your first name shows with your question. Pcd KS Foundation answers here, for everyone.
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Patient registry and other development costs to document PCD afflicted individuals. The registry can only be updated by qualified medical personnel.
Development of clinical centers at major hospitals throughout the united states. These clinical centers will make information available to the medical community about the nature of PCD and provide updated research information.
Our capacity-building activities include expanding, developing and strengthening the skills, abilities, processes, operations, technologies, and resources that allow us to complete our mission and manage our mission-critical programs.
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 | $1.9M | $1.3M |
| InvestmentsLn 11–13 | $1.3M | $1.6M |
| Total assetsLn 16 | $3.3M | $3.6M |
| LiabilitiesLn 26 | $399K | $382K |
| Net assetsLn 32 | $2.9M | $3.2M |
| Line | Total | Programs | Management | Fundraising |
|---|---|---|---|---|
| Grants to domestic organizationsLn 1 | $253K | $253K | ||
| Grants and assistance to foreign recipientsLn 3 | $54K | $54K | ||
| Pay of current officers, directors and key staffLn 5 | $185K | $139K | $46K | |
| Pay of disqualified personsLn 6 | $62K | $46K | $15K | |
| Other salaries and wagesLn 7 | $257K | $257K | ||
| Other employee benefitsLn 9 | $20K | $18K | $2K | |
| Payroll taxesLn 10 | $38K | $34K | $5K | |
| Accounting feesLn 11c | $11K | $8K | $3K | |
| Other fees for servicesLn 11g | $5K | $4K | $1K | |
| Office expensesLn 13 | $18K | $6K | $2K | $10K |
| Information technologyLn 14 | $10K | $3K | $1K | $6K |
| TravelLn 17 | $32K | $9K | $23K | |
| Conferences, conventions and meetingsLn 19 | $667K | $667K | ||
| InterestLn 20 | $4K | $4K | ||
| InsuranceLn 23 | $8K | $6K | $2K | |
| Other expenses (24a–d)Ln 24 | $26K | $14K | $5K | $7K |
| Total functional expensesLn 25 | $1.7M | $1.5M | $86K | $46K |
Filing history
| Year | Money in | Money out | In minus out | Net assets | Download |
|---|---|---|---|---|---|
| FY2024 Latest Viewing | $2.0M | $1.7M | $344K | $3.2M | 990 PDF |
| FY2023 | $895K | $1.1M | −$159K | $2.9M | 990 PDF |
| FY2022 | $1.1M | $827K | $282K | $3.0M | 990 PDF |
| FY2021 | $2.0M | $843K | $1.2M | $2.7M | 990 PDF |
| FY2020 | $717K | $325K | $391K | $1.6M | 990 PDF |
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Schedules filed Part IV
See the full FY2024 990 (6 parts)
Part I · Summary $1,994,370 revenue, 12 lines filed
Part VI · Governance 6 of 7 board members independent, 1 to look at
Part VIII · Statement of revenue $1,994,370 across 9 lines filed
Part IX · Statement of functional expenses $1,650,828 across 16 lines filed
Part X · Balance sheet $3,595,466 assets, 13 lines filed
Part XI · Reconciliation of net assets $3,213,287 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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