Civic Intelligence

Pcd Ks Foundation

990 • Fiscal year 2022 • EIN 20-0543474

Jan 01, 2022 to Dec 31, 2022 • Filed on May 12, 2023

61 Lake Meadow DriveRochester, NY 14612

(612) 386-1261

Siviq Scores

Precomputed percentiles for this filing year versus similar nonprofits in the same peer cohort.

Liabilities / Assets

56th percentile

0.09x

Higher debt load relative to assets than 56% of similar nonprofits.

2022 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2022

Liabilities / Revenue

72nd percentile

0.29x

Higher debt load relative to revenue than 72% of similar nonprofits.

2022 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2022

Net Margin

76th percentile

25%

Higher net margin than 76% of similar nonprofits.

2022 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2022

Top Officer Pay

85th percentile

$155,000

Higher top officer pay than 85% of similar nonprofits.

Top officer pay equals 14.0% of source-year revenue.

2022 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2022

Asset Growth

59th percentile

5.0%

Faster asset growth than 59% of similar nonprofits.

2022 filings • 501(c)3 • $1M-$5M nonprofits • Annualized from 2021 to 2022

Revenue Growth

8th percentile

-45%

Faster revenue growth than 8% of similar nonprofits.

2022 filings • 501(c)3 • $1M-$5M nonprofits • Annualized from 2021 to 2022

Assets

Up

$3,346,050

Up $159,524 (+5.0%) from 2021

Net Assets

Up

$3,029,197

Up $282,048 (+10%) from 2021

Liabilities

Down

$316,853

Down $122,524 (-28%) from 2021

Revenue

Down

$1,109,263

Down $901,861 (-45%) from 2021

Expenses

Down

$827,296

Down $15,935 (-1.9%) from 2021

Net Income

Down

$281,967

Down $885,926 (-76%) from 2021

Historical Trend

Balance Sheet Trend

The highlighted filing sits inside the broader history for assets, liabilities, and net assets.

$4.0M$3.0M$2.0M$1.0M$0Assets 2011: $43,665Liabilities 2011: $02011Assets 2012: $43,757Liabilities 2012: $02012Assets 2013: $96,840Liabilities 2013: $02013Assets 2014: $227,262Liabilities 2014: $0Net Assets 2014: $227,2622014Assets 2015: $310,262Liabilities 2015: $0Net Assets 2015: $310,2622015Assets 2016: $410,759Liabilities 2016: $0Net Assets 2016: $410,7592016Assets 2017: $828,964Liabilities 2017: $23,148Net Assets 2017: $805,8162017Assets 2018: $1,055,384Liabilities 2018: $23,747Net Assets 2018: $1,031,6372018Assets 2019: $1,212,358Liabilities 2019: $24,223Net Assets 2019: $1,188,1352019Assets 2020: $1,752,401Liabilities 2020: $172,913Net Assets 2020: $1,579,4882020Assets 2021: $3,186,526Liabilities 2021: $439,377Net Assets 2021: $2,747,1492021Assets 2022: $3,346,050Liabilities 2022: $316,853Net Assets 2022: $3,029,1972022Assets 2023: $3,268,548Liabilities 2023: $398,664Net Assets 2023: $2,869,8842023Assets 2024: $3,595,466Liabilities 2024: $382,179Net Assets 2024: $3,213,2872024

Highlighted filing

2022

Assets$3,346,050
Liabilities$316,853
Net Assets$3,029,197

Operations Trend

Revenue, expenses, and net income across loaded years, with this filing highlighted.

$3.0M$2.0M$1.0M$0-$1.0MRevenue 2011: $118,693Expenses 2011: $78,419Net Income 2011: $40,2742011Revenue 2012: $74,767Expenses 2012: $90,002Net Income 2012: -$15,2352012Revenue 2013: $122,637Expenses 2013: $65,014Net Income 2013: $57,6232013Revenue 2014: $295,567Expenses 2014: $165,145Net Income 2014: $130,4222014Revenue 2015: $338,072Expenses 2015: $255,072Net Income 2015: $83,0002015Revenue 2016: $419,004Expenses 2016: $318,507Net Income 2016: $100,4972016Revenue 2017: $847,234Expenses 2017: $446,044Net Income 2017: $401,1902017Revenue 2018: $628,741Expenses 2018: $402,926Net Income 2018: $225,8152018Revenue 2019: $668,902Expenses 2019: $512,448Net Income 2019: $156,4542019Revenue 2020: $716,594Expenses 2020: $325,345Net Income 2020: $391,2492020Revenue 2021: $2,011,124Expenses 2021: $843,231Net Income 2021: $1,167,8932021Revenue 2022: $1,109,263Expenses 2022: $827,296Net Income 2022: $281,9672022Revenue 2023: $895,288Expenses 2023: $1,054,601Net Income 2023: -$159,3132023Revenue 2024: $1,994,370Expenses 2024: $1,650,828Net Income 2024: $343,5422024

Highlighted filing

2022

Revenue$1,109,263
Expenses$827,296
Net Income$281,967
Jump To
Filing Snapshot
Filing Period
Jan 1, 2022 to Dec 31, 2022
Signed
May 12, 2023
Return Version
2022v5.0
Gross Receipts
$1,124,781
Mission and Program Overview

Mission

To provide the leadership and resources needed to support increased research, accelerated diagnosis, improved health, and ultimately a cure for primary ciliary dyskinesia (pcd).

Balance Sheet Detail
LineBeginningEndChange
Assets
Cash and Non-Interest-Bearing Accounts$2,746,140$3,097,790▲ $351,650
Pledges and Grants Receivable$415,860$241,337▼ $174,523
Investments in Publicly Traded Securities$15,437--
Prepaid Expenses and Deferred Charges$9,089$6,923▼ $2,166
Total Assets$3,186,526$3,346,050▲ $159,524
Liabilities
Mortgage Notes Payable Secured by Investment Property$150,000$150,000→ $0
Accounts Payable and Accrued Expenses$8,600$76,908▲ $68,308
Deferred Revenue-$50,000-
Grants Payable$274,957$30,000▼ $244,957
Other Liabilities$5,820$9,945▲ $4,125
Total Liabilities$439,377$316,853▼ $122,524
Net Assets / Fund Balance
Net Assets Without Donor Restrictions$2,156,289$2,567,883▲ $411,594
Net Assets With Donor Restrictions$590,860$461,314▼ $129,546
Total Net Assets Fund Balance$2,747,149$3,029,197▲ $282,048
Total Liabilities and Net Assets / Fund Balance$3,186,526$3,346,050▲ $159,524
Compensation and Service Providers

Employees

NameTitleFull / Part TimeBaseOtherTotal
Michele ManionExec Dir, PrFT$155,000-$155,000
Michele ManionExec Dir, President-$130,000$25,000$155,000
Lynn EhrneDirector, SePT$56,800-$56,800

Board Members and Trustees

NameTitle
Bill AntonChair
Gary JoynerVice Chair
Dr Margaret LeighDirector
Tori EastvoldDirector
Amy KovlerDirector, Tr
Carrie WillisDirector, Vi
Revenue and Support

Revenue Composition

Contributions and Grants
$1,094,275
Program Service Revenue
$10,012
Investment Income
$4,976
Other Revenue
$0
All Other Contributions
$1,094,275
Change in Net Assets
$281,967

Audited Revenue Reconciliation

Revenue per Audited Statements
$1,109,263
Revenue Not Reported on Form 990
$81
Total Revenue per Audited Statements
$1,109,344
Total Revenue per Form 990
$1,109,263
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Other Expenses$377,879
Salaries, Compensation, and Employee Benefits$351,685
Total Fundraising Expense$104,453
Grants and Similar Amounts Paid$97,732
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Current Officers, Directors, Trustees, and Key Employees$158,850$52,950-$211,800
Other Salaries and Wages$115,000--$115,000
Conferences and Meetings$108,573--$108,573
Travel$11,731-$78,585$90,316
Fees for Services Other$56,018--$56,018
Grants to Domestic Orgs$52,732--$52,732
Foreign Grants$45,000--$45,000
Payroll Taxes$20,854$4,031-$24,885
Fees for Services Accounting$7,153$3,060-$10,213
All Other Expenses$4,181$1,371$4,115$9,667
Interest$5,043$4,125-$9,168
Insurance$5,702$1,900-$7,602
Fees for Services Legal$6,356--$6,356
Other Expenses$26,734$25,000$6,257$6,257
Information Technology$2,199$733$2,555$5,487
Office Expenses$2,653$884-$3,537
Advertising$10--$10
Total Functional Expenses$628,789$94,054$104,453$827,296

Audited Expense Reconciliation

Line ItemAmount
Expenses per Audited Statements$827,296
Total Expenses per Audited Statements$827,296
Total Expenses per Form 990$827,296
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
Vanderbilt University Medical CenteDallas, TX-Registry Support$30,032
University of MichiganAnn Arbor, MI-Saba Award$20,000

International Compliance

Activity in boycott countries
No
Foreign corporation ownership
No
Foreign partnership interest
No
Interest in foreign trust
No
Passive foreign investment company interest
No
Transfers to foreign corporations
No
Fundraising, Events, and Gaming
Fundraising activities
No
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Professional Fundraising Fees$0
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
No
Subject to proxy tax
No
Debt and Bond Financing

Other Reported Liabilities

LiabilityAmount
Accrued Interest$9,945
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
No
Annual disclosure for covered persons
Yes
Audit committee
Yes
Backup withholding compliance
Yes
Business relationship with 35% controlled entity
No
Business relationship with family members
No
Business relationship with organization members
No
Material changes to governing documents
No
Compensation from other sources disclosed
No
CEO compensation reviewed
No
Other officer compensation reviewed
No
Conflict-of-interest policy
Yes
Audited financial statements prepared
No
Key decisions subject to board approval
No
Management duties delegated
No

Governance Explanations

Form 990, Page 6, Part VI, Line 9

Carrie willis 387 kamnic street pierz, mn 56364 amy kovler 540 w stratford chicago, il 60657 lynn ehrne 61 lake meadow drive rochester, ny 14612 bill anton 1907 n milwaukee ave chicago, il 60647 gary joyner 64 lawton road hilton head, sc 29928 tori eastvold 123 woodland dr forest city, ia 50436 dr. Margaret leigh 904 monterey valley drive chapel hill, nc 27516-9132

Form 990, Page 6, Part VI, Line 11B

Form 990 is prepared by an independent cpa firm. The 990 is distributed to all board members for comment and a vote to approve before filing.

Form 990, Page 6, Part VI, Line 12C

Potential conflicts are submitted in writing and reviewed on an as needed basis by the executive committee and again annually by the entire board when all board members are required to re-sign the coi policy.

Form 990, Page 6, Part VI, Line 19

No documents available to the public

Filing and Contact Details

Filer

Filer Name
Pcd Ks Foundation
EIN
20-0543474
Phone
6123861261
Address
61 LAKE MEADOW DRIVE, ROCHESTER, NY 14612
Doing Business As
Pcd Foundation

Signing Officer

Name
Michele Manion
Title
Exec Dir, President
Phone
6123861261
Signed
2023-05-12

Organization Details

Principal Officer
Michele Manion
Formed
2004
Legal Domicile
Mn
Voting Board Members
8
Independent Board Members
6
Employees
3
Volunteers
20

Preparer

Firm
Olson Clough & Leblanc Ltd
Address
10580 WAYZATA BLVD STE 200, MINNETONKA, MN 55305-1525
Preparer
Michael P Amberson
Phone
9525449600
Supplemental Narrative

Additional Explanations

Form 990, Page 2, Part III, Line 4D

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. This includes adding critical staff with skills in business development (we hired 1 fte in this capacity), contracting with consultants who have expertise in areas our internal expertise was lacking (wolf associates for payroll, 401k and other hr guidance), and upgrading our technology to be able to handle our expanding needs. Additionally, we were able to send staff to meetings and convenings related to capacity building.

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IRS990/ProgSrvcAccomActy2Grp/Desc0DEVELOPMENT 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.
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IRS990/ProgSrvcAccomActy3Grp/Desc0PATIENT REGISTRY AND OTHER DEVELOPMENT COSTS TO DOCUMENT PCD AFFLICTED INDIVIDUALS. THE REGISTRY CAN ONLY BE UPDATED BY QUALIFIED MEDICAL PERSONNEL.
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IRS990/ProgSrvcAccomActyOtherGrp/Desc0OUR 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. THIS INCLUDES ADDING CRITICAL STAFF WITH SKILLS IN BUSINESS DEVELOPMENT (WE HIRED 1 FTE IN THIS CAPACITY), CONTRACTING WITH CONSULTANTS WHO HAVE EXPERTISE IN AREAS OUR INTERNAL EXPERTISE WAS LACKING (WOLF ASSOCIATES FOR PAYROLL, 401K AND OTHER HR GUIDANCE), AND UPGRADING OUR TECHNOLOGY TO BE ABLE TO HANDLE OUR EXPANDING NEEDS. ADDITIONALLY, WE WERE ABLE TO SEND STAFF TO MEETINGS AND CONVENINGS RELATED TO CAPACITY BUILDING.
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IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus1YearAmt02010431
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IRS990ScheduleF/GrantsToOrgOutsideUSGrp/MannerOfCashDisbursementTxt0CHECK
IRS990ScheduleF/GrantsToOrgOutsideUSGrp/PurposeOfGrantTxt0CLINICAL SUPPORT
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IRS990ScheduleI/RecipientTable/RecipientBusinessName/BusinessNameLine1Txt0VANDERBILT UNIVERSITY MEDICAL CENTE
IRS990ScheduleI/RecipientTable/RecipientBusinessName/BusinessNameLine1Txt1UNIVERSITY OF MICHIGAN
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IRS990ScheduleI/RecipientTable/USAddress/AddressLine1Txt1306 S STATE ST
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IRS990ScheduleJ/RltdOrgOfficerTrstKeyEmplGrp/TitleTxt0EXEC DIR, PRESIDENT
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IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt0OUR 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. THIS INCLUDES ADDING CRITICAL STAFF WITH SKILLS IN BUSINESS DEVELOPMENT (WE HIRED 1 FTE IN THIS CAPACITY), CONTRACTING WITH CONSULTANTS WHO HAVE EXPERTISE IN AREAS OUR INTERNAL EXPERTISE WAS LACKING (WOLF ASSOCIATES FOR PAYROLL, 401K AND OTHER HR GUIDANCE), AND UPGRADING OUR TECHNOLOGY TO BE ABLE TO HANDLE OUR EXPANDING NEEDS. ADDITIONALLY, WE WERE ABLE TO SEND STAFF TO MEETINGS AND CONVENINGS RELATED TO CAPACITY BUILDING.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt1CARRIE WILLIS 387 KAMNIC STREET PIERZ, MN 56364 AMY KOVLER 540 W STRATFORD CHICAGO, IL 60657 LYNN EHRNE 61 LAKE MEADOW DRIVE ROCHESTER, NY 14612 BILL ANTON 1907 N MILWAUKEE AVE CHICAGO, IL 60647 GARY JOYNER 64 LAWTON ROAD HILTON HEAD, SC 29928 TORI EASTVOLD 123 WOODLAND DR FOREST CITY, IA 50436 DR. MARGARET LEIGH 904 MONTEREY VALLEY DRIVE CHAPEL HILL, NC 27516-9132
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt2FORM 990 IS PREPARED BY AN INDEPENDENT CPA FIRM. THE 990 IS DISTRIBUTED TO ALL BOARD MEMBERS FOR COMMENT AND A VOTE TO APPROVE BEFORE FILING.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt3POTENTIAL CONFLICTS ARE SUBMITTED IN WRITING AND REVIEWED ON AN AS NEEDED BASIS BY THE EXECUTIVE COMMITTEE AND AGAIN ANNUALLY BY THE ENTIRE BOARD WHEN ALL BOARD MEMBERS ARE REQUIRED TO RE-SIGN THE COI POLICY.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt4NO DOCUMENTS AVAILABLE TO THE PUBLIC
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc0FORM 990, PAGE 2, PART III, LINE 4D
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc1FORM 990, PAGE 6, PART VI, LINE 9
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc2FORM 990, PAGE 6, PART VI, LINE 11B
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc3FORM 990, PAGE 6, PART VI, LINE 12C
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc4FORM 990, PAGE 6, PART VI, LINE 19
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Document Assets

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Filings

Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2024Detailed filing. Detailed filing data is available for this year.$3.60$0.38$3.21$1.99$1.65$0.34
2023Detailed filing. Detailed filing data is available for this year.$3.27$0.40$2.87$0.90$1.05$0.16
2022Detailed filing. Detailed filing data is available for this year.$3.35$0.32$3.03$1.11$0.83$0.28
2021Detailed filing. Detailed filing data is available for this year.$3.19$0.44$2.75$2.01$0.84$1.17
2020Detailed filing. Detailed filing data is available for this year.$1.75$0.17$1.58$0.72$0.33$0.39
2019Detailed filing. Detailed filing data is available for this year.$1.21$0.02$1.19$0.67$0.51$0.16
2018Detailed filing. Detailed filing data is available for this year.$1.06$0.02$1.03$0.63$0.40$0.23
2017Detailed filing. Detailed filing data is available for this year.$0.83$0.02$0.81$0.85$0.45$0.40
2016Detailed filing. Detailed filing data is available for this year.$0.41$0.00$0.41$0.42$0.32$0.10
2015Detailed filing. Detailed filing data is available for this year.$0.31$0.00$0.31$0.34$0.26$0.08
2014Summary only. Only limited summary data is available for this year.$0.23$0.00$0.23$0.30$0.17$0.13
2013Summary only. Only limited summary data is available for this year.$0.10$0.00$0.12$0.07$0.06
2012Summary only. Only limited summary data is available for this year.$0.04$0.00$0.07$0.09$0.02
2011Summary only. Only limited summary data is available for this year.$0.04$0.00$0.12$0.08$0.04