Pcd KS Foundation: FY2022 Nonprofit Profile & Form 990 (EIN 20-0543474)

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.

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3 programs · $495K · in their own filed words · FY2022

01

Patient registry and other development costs to document PCD afflicted individuals. The registry can only be updated by qualified medical personnel.

$313Kprogram expense

02

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 infromation.

$172Kprogram expense

03

Conducted regional support meetings to provide information to individuals afflicted with PCD.

$10Kprogram expense

Funders

Who pays for it.

From grant filings on record. Receipts are incomplete: individual donors are never listed.

Grants

Schedule I · received and paid

Grants received · FY2024

Greater HorizonsFY2024$100K

American Online Giving Foundation INCFY2024$51K

The Minneapolis FoundationFY2024$30K

Fidelity Investments Charitable Gift FundFY2024$25K

Jewish Federation of Metropolitan ChicagoFY2024$25K

National Philanthropic TrustFY2024$11K

Granite Partners Foundation of Minnesota INCFY2024$10K

Paypal Charitable Giving FundFY2024$8K

Total grants receivedfrom 11 funders$278K

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Grants paid · 11 grants · $627K · 2020–2024

Indiana University ResearchFY2024$15,000

Columbia UniversityFY2024$10,000

Riley Childrens HealthFY2024$10,000

Uscf FoundationFY2024$10,000

Individual RecipientFY2024$6,730

Vanderbilt University Medical CenteFY2023$140,000

Seattle Children HospitalFY2023$60,000

Vanderbilt University Medical CenteFY2022$30,032

University of Michigan House Officers AssociationMI · FY2022$20,000

Vanderbilt University Medical CenteFY2021$304,957

Unc Health Foundation INCNC · FY2020$20,000

By the numbers

The FY2022 990, line by line.

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1The main four

Money inPt VIII

$1.1M

Ln 12

Gifts and grantsLn 1h$1.1M

Fees for servicesLn 2g$10K

Investment incomeLn 3$5K

Money outPt IX

$827K

Ln 25

Programscol B$629K

Managementcol C$94K

Fundraisingcol D$104K

Owns and owesPt X

$3.0M

net assets · Ln 32

Cash and savingsLn 1–2$3.1M

Total assetsLn 16$3.3M

LiabilitiesLn 26$317K

PeoplePt VI, VII

8

listed · VII A

PaidVII A2

Voting boardVI 1a8

IndependentVI 1b6

2In more detail

Revenue in detailPt VIII

Gifts and grantsLn 1h$1.1M

Fees for servicesLn 2g$10K

Investment incomeLn 3$5K

Gains on assetsLn 7−$884

Total revenueLn 12$1.1M

Assets in detailPt X, end of year

CashLn 1$3.1M

Cash and savings togetherLn 1–2$3.1M

Total assetsLn 16$3.3M

LiabilitiesLn 26$317K

Net assetsLn 32$3.0M

OperationsPt I, VI

EmployeesI 55

VolunteersI 620

Fiscal year endsHeaderDecember

Conflict-of-interest policyVI 12aYes

Whistleblower policyVI 13Yes

Records policyVI 14Yes

3Year over year

Balance sheet, start vs end of yearPt X · col A, B

Line	Start FY22	End FY22
Cash and savingsLn 1–2	$2.7M	$3.1M
Total assetsLn 16	$3.2M	$3.3M
LiabilitiesLn 26	$439K	$317K
Net assetsLn 32	$2.7M	$3.0M

4Every line

Statement of functional expensesPt IX · every line

Line	Total	Programs	Management	Fundraising
Grants to domestic organizationsLn 1	$53K	$53K
Grants and assistance to foreign recipientsLn 3	$45K	$45K
Pay of current officers, directors and key staffLn 5	$212K	$159K	$53K
Other salaries and wagesLn 7	$115K	$115K
Payroll taxesLn 10	$25K	$21K	$4K
Legal feesLn 11b	$6K	$6K
Accounting feesLn 11c	$10K	$7K	$3K
Other fees for servicesLn 11g	$56K	$56K
Advertising and promotionLn 12	$10	$10
Office expensesLn 13	$4K	$3K	$884
Information technologyLn 14	$5K	$2K	$733	$3K
TravelLn 17	$90K	$12K		$79K
Conferences, conventions and meetingsLn 19	$109K	$109K
InterestLn 20	$9K	$5K	$4K
InsuranceLn 23	$8K	$6K	$2K
Other expenses (24a–d)Ln 24	$71K	$27K	$25K	$19K
All other expensesLn 24e	$10K	$4K	$1K	$4K
Total functional expensesLn 25	$827K	$629K	$94K	$104K

Filing history

Year	Money in	Money out	In minus out	Net assets	Download
FY2024 Latest	$2.0M	$1.7M	$344K	$3.2M	990 PDF
FY2023	$895K	$1.1M	−$159K	$2.9M	990 PDF
FY2022 Viewing	$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

III · Programs R · Related orgs G · Fundraising L · Interested persons I · Grants A · Public support F · Foreign J · Pay O · Explanations

See the full FY2022 990 (6 parts)

Part I · Summary $1,109,263 revenue, 12 lines filed

I-8 Contributions and grantsPrior year $2,000,374$1,094,275

I-9 Program service revenuePrior year $10,057$10,012

I-10 Investment incomePrior year $693$4,976

I-11 Other revenue$0

I-12 Total revenuePrior year $2,011,124$1,109,263

I-13 Grants and similar amounts paidPrior year $345,057$97,732

I-14 Benefits paid to members$0

I-15 Salaries and benefitsPrior year $326,180$351,685

I-16a Professional fundraising fees$0

I-17 Other expensesPrior year $171,994$377,879

I-18 Total expensesPrior year $843,231$827,296

I-19 Revenue less expensesPrior year $1,167,893$281,967

Part VI · Governance 6 of 8 board members independent, 1 to look at

VI-1a Voting members of the governing body8

VI-1b Independent voting members6

VI-15a Process for setting top official's payNo

VI-2 Family or business relationship among officers or directorsNo

VI-12a Written conflict of interest policyYes

VI-13 Written whistleblower policyYes

VI-14 Document retention and destruction policyYes

Part VIII · Statement of revenue $1,109,263 across 6 lines filed

VIII-1f All other contributions, gifts and grants$1,094,275

VIII-1h Total contributions, gifts and grants$1,094,275

VIII-2a-f Program service revenue, itemized rows (sum of 2a–2f as filed)Related to mission $10,012$10,012

VIII-3 Investment incomeExcluded from tax $5,860$5,860

VIII-7 Net gain or loss on sales of assetsRelated to mission −$884−$884

VIII-12 Total revenueRelated to mission $9,128 · Excluded from tax $5,860$1,109,263

Part IX · Statement of functional expenses $827,296 across 17 lines filed

IX-1 Grants to domestic organizationsPrograms $52,732$52,732

IX-3 Grants and assistance to foreign recipientsPrograms $45,000$45,000

IX-5 Pay of current officers, directors and key staffPrograms $158,850 · Management $52,950$211,800

IX-7 Other salaries and wagesPrograms $115,000$115,000

IX-10 Payroll taxesPrograms $20,854 · Management $4,031$24,885

IX-11b Legal feesPrograms $6,356$6,356

IX-11c Accounting feesPrograms $7,153 · Management $3,060$10,213

IX-11g Other fees for servicesPrograms $56,018$56,018

IX-12 Advertising and promotionPrograms $10$10

IX-13 Office expensesPrograms $2,653 · Management $884$3,537

IX-14 Information technologyPrograms $2,199 · Management $733 · Fundraising $2,555$5,487

IX-17 TravelPrograms $11,731 · Fundraising $78,585$90,316

IX-19 Conferences, conventions and meetingsPrograms $108,573$108,573

IX-20 InterestPrograms $5,043 · Management $4,125$9,168

IX-23 InsurancePrograms $5,702 · Management $1,900$7,602

IX-24 Other expenses (24a–d)Programs $26,734 · Management $25,000 · Fundraising $19,198$70,932

IX-24e All other expensesPrograms $4,181 · Management $1,371 · Fundraising $4,115$9,667

IX-25 Total functional expensesPrograms $628,789 · Management $94,054 · Fundraising $104,453$827,296

Part X · Balance sheet $3,346,050 assets, 13 lines filed

X-1 Cash, non-interest-bearingStart of year $2,746,140$3,097,790

X-3 Pledges and grants receivableStart of year $415,860$241,337

X-9 Prepaid expenses and deferred chargesStart of year $9,089$6,923

X-16 Total assetsStart of year $3,186,526$3,346,050

X-17 Accounts payable and accrued expensesStart of year $8,600$76,908

X-18 Grants payableStart of year $274,957$30,000

X-19 Deferred revenue$50,000

X-25 Other liabilitiesStart of year $5,820$9,945

X-26 Total liabilitiesStart of year $439,377$316,853

X-27 Net assets without donor restrictionsStart of year $2,156,289$2,567,883

X-28 Net assets with donor restrictionsStart of year $590,860$461,314

X-32 Total net assets or fund balancesStart of year $2,747,149$3,029,197

X-33 Total liabilities and net assetsStart of year $3,186,526$3,346,050

Part XI · Reconciliation of net assets $3,029,197 net assets at year end

XI-1 Total revenue$1,109,263

XI-2 Total expenses$827,296

XI-3 Revenue less expenses$281,967

XI-4 Net assets at start of year$2,747,149

XI-5 Net unrealized gains (losses) on investments$81

XI-10 Net assets at end of year$3,029,197

Form 990 e-file (XML) FY2022 from the IRS · Classification, formation year and address from the IRS Business Master File

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Pcd KS Foundation FY2022 filing

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