Civic Intelligence

C & S Patient Education Foundation

990 • Fiscal year 2018 • EIN 20-0904691

Jan 01, 2018 to Dec 31, 2018 • Filed on Feb 07, 2019

Organization ProfileWWW.CONQUERCHIARI.ORG
320 Osprey CourtWexford, PA 15090

(724) 940-0116

Siviq Scores

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

Liabilities / Assets

27th percentile

0.00x

Tied with the lowest-debt nonprofits in its peer group.

2018 filings • 501(c)3 • $500k-$1M nonprofits • Source year 2018

Liabilities / Revenue

27th percentile

0.00x

Tied with the lowest-debt nonprofits in its peer group.

2018 filings • 501(c)3 • $500k-$1M nonprofits • Source year 2018

Net Margin

79th percentile

22%

Higher net margin than 79% of similar nonprofits.

2018 filings • 501(c)3 • $500k-$1M nonprofits • Source year 2018

Top Officer Pay

89th percentile

$103,543

Higher top officer pay than 89% of similar nonprofits.

Top officer pay equals 21.5% of source-year revenue.

2018 filings • 501(c)3 • $500k-$1M nonprofits • Source year 2018

Asset Growth

73rd percentile

14%

Faster asset growth than 73% of similar nonprofits.

2018 filings • 501(c)3 • $500k-$1M nonprofits • Annualized from 2017 to 2018

Revenue Growth

20th percentile

-14%

Faster revenue growth than 20% of similar nonprofits.

2018 filings • 501(c)3 • $500k-$1M nonprofits • Annualized from 2017 to 2018

Balance Sheet
Liabilities / Assets27th percentile

Assets

Flat

$403,597

Flat from 2018

Net Assets

Flat

$403,597

Flat from 2018

Liabilities

Flat

$0

Flat from 2018

Revenue And Expenses
Liabilities / Revenue27th percentileNet Margin79th percentile

Revenue

Flat

$482,270

Flat from 2018

Expenses

Flat

$374,655

Flat from 2018

Net Income

Flat

$107,615

Flat from 2018

Historical Trend

Balance Sheet Trend

Asset Growth73rd percentile

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

$1.0M$500K$0Assets 2011: $593,236Liabilities 2011: $17,523Net Assets 2011: $575,7132011Assets 2012: $606,282Liabilities 2012: $2,932Net Assets 2012: $603,3502012Assets 2013: $613,891Liabilities 2013: $71,676Net Assets 2013: $542,2152013Assets 2014: $899,436Liabilities 2014: $103,534Net Assets 2014: $795,9022014Assets 2015: $549,636Liabilities 2015: $0Net Assets 2015: $549,6362015Assets 2016: $444,699Liabilities 2016: $0Net Assets 2016: $444,6992016Assets 2017: $352,979Liabilities 2017: $56,997Net Assets 2017: $295,9822017Assets 2018: $403,597Liabilities 2018: $0Net Assets 2018: $403,5972018Assets 2018: $403,597Liabilities 2018: $0Net Assets 2018: $403,5972018Assets 2019: $403,962Liabilities 2019: $0Net Assets 2019: $403,9622019Assets 2020: $453,273Liabilities 2020: $0Net Assets 2020: $453,2732020Assets 2021: $650,152Liabilities 2021: $0Net Assets 2021: $650,1522021Assets 2022: $535,451Liabilities 2022: $19,416Net Assets 2022: $516,0352022Assets 2023: $541,359Liabilities 2023: $15,949Net Assets 2023: $525,4102023

Highlighted filing

2018

Assets$403,597
Liabilities$0
Net Assets$403,597
Open 2018 Filing

Operations Trend

Revenue Growth20th percentile

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

$1.0M$500K$0-$500KRevenue 2011: $427,692Expenses 2011: $409,404Net Income 2011: $18,2882011Revenue 2012: $611,699Expenses 2012: $584,062Net Income 2012: $27,6372012Revenue 2013: $562,074Expenses 2013: $623,209Net Income 2013: -$61,1352013Revenue 2014: $762,744Expenses 2014: $509,057Net Income 2014: $253,6872014Revenue 2015: $607,953Expenses 2015: $854,219Net Income 2015: -$246,2662015Revenue 2016: $595,029Expenses 2016: $650,183Net Income 2016: -$55,1542016Revenue 2017: $557,837Expenses 2017: $626,617Net Income 2017: -$68,7802017Revenue 2018: $482,270Expenses 2018: $374,655Net Income 2018: $107,6152018Revenue 2018: $482,270Expenses 2018: $374,655Net Income 2018: $107,6152018Revenue 2019: $460,908Expenses 2019: $460,543Net Income 2019: $3652019Revenue 2020: $383,634Expenses 2020: $334,323Net Income 2020: $49,3112020Revenue 2021: $503,852Expenses 2021: $306,973Net Income 2021: $196,8792021Revenue 2022: $421,843Expenses 2022: $555,960Net Income 2022: -$134,1172022Revenue 2023: $399,573Expenses 2023: $390,198Net Income 2023: $9,3752023

Highlighted filing

2018

Revenue$482,270
Expenses$374,655
Net Income$107,615
Open 2018 Filing
Jump To
Filing Snapshot
Filing Period
Jan 1, 2018 to Dec 31, 2018
Signed
Feb 7, 2019
Return Version
2018v3.1
Gross Receipts
$579,472
Mission and Program Overview

Mission

The organization is dedicated to improving the experiences and outcomes of chiari and syringomelia patients by: 1.providing accurate, up-to-date, and easy to understand information to patients so that they can take control of their health care and make intelligent,informed decisions. 2. Raising awareness among family, friends, and the general public so that they can better understand what patients are going through and are better able to provide support. 3.raising awareness among, and providing accruate, up-to-date information to the medical community, so that errors in diagnosis and treatment are reduced. 4.sponsoring research to advance the understanding of these conditions and in the end conquer chiari.

Since our inception, we have made tremendous strides towards the goal of conquering chiari, includng:1.serving as a resource for information on chiari and related topics via our website (www.conquerchiari.org) and various publications. 2. Sponsoring research for chiari via our conquer chiari research conference and the conquer chiari research center located at the university of akron, in which grants for research projects focus on improving diagnostics, assessing the cognitive effects of chiari, genetic research, and other critical areas. 3. Promoting awareness through our conquer chiari walk across america, which is an annual fundraising event consisting of a series of walks held across the country on the same day.

Balance Sheet Detail
LineBeginningEndChange
Assets
Cash and Non-Interest-Bearing Accounts$352,979$383,638▲ $30,659
Total Assets$352,979$403,597▲ $50,618
Other Assets Total$0$19,959▲ $19,959
Liabilities
Grants Payable$56,997--
Total Liabilities$56,997$0▼ $56,997
Net Assets / Fund Balance
Unrestricted Net Assets$295,982$403,597▲ $107,615
Total Net Assets Fund Balance$295,982$403,597▲ $107,615
Total Liabilities and Net Assets / Fund Balance$352,979$403,597▲ $50,618
Compensation and Service Providers
Top Officer Pay89th percentile

Employees

NameTitleFull / Part TimeBaseOtherTotal
Richard LabudaExecutive Director, BoardFT$77,500$26,043$103,543

Board Members and Trustees

NameTitle
Richard KushnerPresident, Board Member
David LeeVice President, Board Memb
CHARLES O'HANLONBoard Member
Mark TomczakTreasurer, Board Member
Revenue and Support

Revenue Composition

Contributions and Grants
$511,037
Program Service Revenue
$8,042
Investment Income
$123
Other Revenue
$-36,932
All Other Contributions
$155,294
Change in Net Assets
$107,615

Noncash Contribution Practices

Property subject to holding requirements
No
Reviewed unusual noncash gifts
No
Third parties used for noncash contributions
No

Noncash Contributions

Contribution TypeContribution CountReported AmountValuation Method
Other Non Cash Contri Table387$24,114Donor Value
Other Non Cash Contri Table169$8,257Face Value
Other Non Cash Contri Table103$6,647Estimated Value
Other Non Cash Contri Table45$5,675Similar Services
Total Noncash Contributions704$44,693-

Audited Revenue Reconciliation

Revenue per Audited Statements
$482,270
Revenue Not Reported on Financial Statements
$0
Revenue Not Reported on Form 990
$97,202
Total Revenue per Audited Statements
$579,472
Total Revenue per Form 990
$482,270
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Salaries, Compensation, and Employee Benefits$153,015
Grants and Similar Amounts Paid$149,451
Total Fundraising Expense$91,464
Other Expenses$72,189
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Grants to Domestic Orgs$149,451--$149,451
Other Salaries and Wages$34,543$33,439$49,518$117,500
Other Employee Benefits$7,675$7,430$11,002$26,107
Fees for Services Other$4,340$2,207$6,180$12,727
Fees for Services Legal-$10,081$1,033$11,114
Information Technology-$5,042$5,366$10,408
Payroll Taxes$2,766$2,677$3,965$9,408
Fees for Services Accounting-$6,726-$6,726
Depreciation Depletion--$6,653$6,653
Conferences and Meetings$5,577--$5,577
All Other Expenses$1,545$388-$1,933
Other Expenses$0$1,849$0$1,849
Insurance-$956$200$1,156
Total Functional Expenses$208,010$75,181$91,464$374,655

Audited Expense Reconciliation

Line ItemAmount
Total Expenses per Audited Statements$471,857
Expenses per Audited Statements$374,655
Total Expenses per Form 990$374,655
Expenses Not Reported on Form 990$97,202
Expenses Not Reported on Financial Statements$0
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
University of AkronAkron, OH501(c)(3)ONGOING BUDGET FOR CONQUER CHIARI RESEARCH CENTER, ESTABLISH "CHIARI 1000", TARGETING SYRINX$136,951
Emory UniversityAtlanta, GA501(c)(3)Extension of Project to Evaluate the Use of Dense Mr Imaging in Chiari Diagnosis and Research$12,500
Duke University School of MedicineDurham, NC501(c)(3)WE PROPOSE TO UTILIZE NEXT GENERATION SEQUENCING TECHNOLOGY TO: A) IDENTIFY PUTATIVE FUNCTIONAL VARIANTS IN THE CANDIDATE GENES THAT HAVE PREVIOUSLY PROVIDED EVIDENCE OF ASSOCIATION (ALDH1A2, CDX1, FLT1, RDH10 AND MSGN1), AND B) DETERMINE THE EXTENT TO WHICH EDS GENES CONTRIBUTE TO CM-1. THE GENES THAT WILL BE EXAMINED IN THE TARGETED SEQUENCING APPROACH ARE SHOWN IN FIGURE 1. WE WILL PERFORM THE SEQUENCING ON THE CHIARI1000 DATA SET, DEVELOPED BY THE CONQUER CHIARI RESEARCH CENTER (CCRC) AT THE UNIVERSITY OF AKRON, BECAUSE CHIARI1000 REPRESENTS A COLLECTION OF CM-1 PATIENTS THAT ARE INDEPENDENT OF THE SPANISH AND DUKE DATA SETS THAT WERE UTILIZED FOR PREVIOUS GENETIC DISCOVERIES DESCRIBED ABOVE. COUPLING THE CHIARI1000 DATA SET WITH A MORE DETAILED GENETIC TECHNOLOGY (TARGETED NEXT GENERATION SEQUENCING) WILL PROVIDE NOVEL INFORMATION ABOUT SPECIFIC FUNCTIONAL VARIANTS IN SEVERAL CM-1 CANDIDATE GENES. WE WILL EVALUATE THE RELATIONSHIP BETWEEN THE GENETIC VARIANTS IN THESE CANDIDATE$0
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Fundraising Direct Expenses$97,202
Fundraising Gross Income$60,270
Professional Fundraising Fees$0

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
Walk Across America$416,013$60,270$94,573$-34,303
Total Events$416,013$60,270$94,573$-34,303
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
No
Subject to proxy tax
No
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
No
Annual disclosure for covered persons
Yes
Audit committee
No
Backup withholding compliance
Yes
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
Yes
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, Part VI, Section B, Line 11B

“The organization distributes a draft 990 to all board directors and the executive director via email. If necessary, discussion is undertaken via email or by meeting if so desired by any director. A vote is then taken to affirmatively adopt and file the 990. At the next official board meeting, the minutes reflect the adoption of the 990.”

Form 990, Part VI, Section B, Line 12C

“The executive director is responsible for distributing and collecting signed conflict disclosure statements annually.”

Form 990, Part VI, Section B, Line 15A

“The compensation committee meets to review the performance of the executive director. The compensation committee chair seeks input from the other directors and the executive director regarding accomplishments. The committee establishes an annual performance bonus, if so earned, and salary for the following year. Salary and bonuses are based in part on the size of the organization in revenue and comparable executive directors' salaries at similar sized organizations. The compensation committee's recommendation is made at the following board meeting and voted on by the board. Minutes from the compensation committee's meeting are entered into the record.”

Form 990, Part VI, Section C, Line 19

“Form 990 and the 501(c)(3)determination letter are available on the website. Audited financials and policies are included in the annual report which is posted on the website.”

Filing and Contact Details

Filer

Filer Name
C & S Patient Education Foundation
EIN
20-0904691
Phone
7249400116
Address
320 OSPREY COURT, WEXFORD, PA 15090
Doing Business As
Conquer Chiari

Signing Officer

Name
Richard Labuda
Title
Executive Director
Phone
7249400116
Signed
2019-02-07
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Richard Labuda
Formed
2004
Legal Domicile
Pa
Voting Board Members
5
Independent Board Members
4
Employees
2
Volunteers
150

Preparer

Firm
Grossman Yanak & Ford Llp
Address
THREE GATEWAY CTR STE 1800, PITTSBURGH, PA 15222
Preparer
Richard E Dynoske
Phone
4123389300
Supplemental Narrative

Financial Statement Notes

PART X, LINE 2:

“The foundation is exempt from federal income taxes under section 501(c)(3) of the internal revenue code and applicable state law. Management believes that there is no liability related to uncertain tax positions at december 31, 2018. The foundation is no longer subject to tax examinations for tax periods through december 31, 2015.”

PART XI, LINE 2D - OTHER ADJUSTMENTS:

“Fundraising expenses netted against income”

PART XII, LINE 2D - OTHER ADJUSTMENTS:

“Fundraising expenses netted against income”

Raw XML AppendixShowing 400 of 497 raw XML fields

This appendix keeps the raw XML leaves available for debugging and edge-case review. The human report above is the primary experience.

Path#Value
IRS990/AccountantCompileOrReviewInd00
IRS990/ActivitiesConductedPrtshpInd00
IRS990/ActivityOrMissionDesc0SINCE OUR INCEPTION, WE HAVE MADE TREMENDOUS STRIDES TOWARDS THE GOAL OF CONQUERING CHIARI, INCLUDNG:1.SERVING AS A RESOURCE FOR INFORMATION ON CHIARI AND RELATED TOPICS VIA OUR WEBSITE (WWW.CONQUERCHIARI.ORG) AND VARIOUS PUBLICATIONS. 2. SPONSORING RESEARCH FOR CHIARI VIA OUR CONQUER CHIARI RESEARCH CONFERENCE AND THE CONQUER CHIARI RESEARCH CENTER LOCATED AT THE UNIVERSITY OF AKRON, IN WHICH GRANTS FOR RESEARCH PROJECTS FOCUS ON IMPROVING DIAGNOSTICS, ASSESSING THE COGNITIVE EFFECTS OF CHIARI, GENETIC RESEARCH, AND OTHER CRITICAL AREAS. 3. PROMOTING AWARENESS THROUGH OUR CONQUER CHIARI WALK ACROSS AMERICA, WHICH IS AN ANNUAL FUNDRAISING EVENT CONSISTING OF A SERIES OF WALKS HELD ACROSS THE COUNTRY ON THE SAME DAY.
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IRS990/Desc0GRANTS FOR RESEARCH PROJECTS FOCUSED ON IMPROVING DIAGNOSTICS, ASSESSING THE COGNITIVE EFFECTS OF CHIARI, GENETICS RESEARCH, AND OTHER CRITICAL AREAS. MOST FUNDING IS DIRECTED TOWARDS THE CONQUER CHIARI RESEARCH CENTER (CCRC) AT THE UNIVERSITY OF AKRON, THE WORLD'S FIRST RESEARCH LABORATORY DEDICATED SOLELY TO ADVANCING THE MEDICAL AND SCIENTIFIC UNDERSTANDING OF CHIARI MALFORMATION. THE CCRC IS A STATE OF THE ART FACILITY, STAFFED WITH DISTINGUISHED RESEARCHERS, WORKING DILIGENTLY TO: APPLY THE LATEST ENGINEERING TECHNIQUES AND ANALYSIS TO IMPROVE DIAGNOSES AND TREATMENT OPTIONS, LEVERAGE THE CONQUER CHIARI PATIENT REGISTRY TO STUDY THE EPIDEMIOLOGY AND NATURAL HISTORY OF CHIARI, FOSTER COLLABORATIONS WITH LEADING CLINICIANS AND SCIENTISTS TO ADVANCE THE CONQUER CHIARI RESEARCH AGENDA AND ACT AS A FOCAL POINT FOR THE CHIARI RESEARCH.
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IRS990/Form990PartVIISectionAGrp/PersonNm0RICHARD LABUDA
IRS990/Form990PartVIISectionAGrp/PersonNm1RICHARD KUSHNER
IRS990/Form990PartVIISectionAGrp/PersonNm2DAVID LEE
IRS990/Form990PartVIISectionAGrp/PersonNm3MARK TOMCZAK
IRS990/Form990PartVIISectionAGrp/PersonNm4CHARLES O'HANLON
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IRS990/Form990PartVIISectionAGrp/TitleTxt0EXECUTIVE DIRECTOR, BOARD
IRS990/Form990PartVIISectionAGrp/TitleTxt1PRESIDENT, BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt2VICE PRESIDENT, BOARD MEMB
IRS990/Form990PartVIISectionAGrp/TitleTxt3TREASURER, BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt4BOARD MEMBER
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IRS990/MissionDesc0THE ORGANIZATION IS DEDICATED TO IMPROVING THE EXPERIENCES AND OUTCOMES OF CHIARI AND SYRINGOMELIA PATIENTS BY: 1.PROVIDING ACCURATE, UP-TO-DATE, AND EASY TO UNDERSTAND INFORMATION TO PATIENTS SO THAT THEY CAN TAKE CONTROL OF THEIR HEALTH CARE AND MAKE INTELLIGENT,INFORMED DECISIONS. 2. RAISING AWARENESS AMONG FAMILY, FRIENDS, AND THE GENERAL PUBLIC SO THAT THEY CAN BETTER UNDERSTAND WHAT PATIENTS ARE GOING THROUGH AND ARE BETTER ABLE TO PROVIDE SUPPORT. 3.RAISING AWARENESS AMONG, AND PROVIDING ACCRUATE, UP-TO-DATE INFORMATION TO THE MEDICAL COMMUNITY, SO THAT ERRORS IN DIAGNOSIS AND TREATMENT ARE REDUCED. 4.SPONSORING RESEARCH TO ADVANCE THE UNDERSTANDING OF THESE CONDITIONS AND IN THE END CONQUER CHIARI.
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IRS990/NetAssetsOrFundBalancesEOYAmt0403597
IRS990/NetIncmFromFundraisingEvtGrp/ExclusionAmt0-36932
IRS990/NetIncmFromFundraisingEvtGrp/TotalRevenueColumnAmt0-36932
IRS990/NetUnrelatedBusTxblIncmAmt00
IRS990/NoncashContributionsAmt035210
IRS990/NondeductibleContributionsInd00
IRS990/OfficerMailingAddressInd00
IRS990/OperateHospitalInd00
IRS990/Organization501c3Ind0X
IRS990/OrganizationFollowsSFAS117Ind0X
IRS990/OtherAssetsTotalGrp/BOYAmt00
IRS990/OtherAssetsTotalGrp/EOYAmt019959
IRS990/OtherChangesInNetAssetsAmt00
IRS990/OtherEmployeeBenefitsGrp/FundraisingAmt011002
IRS990/OtherEmployeeBenefitsGrp/ManagementAndGeneralAmt07430
IRS990/OtherEmployeeBenefitsGrp/ProgramServicesAmt07675
IRS990/OtherEmployeeBenefitsGrp/TotalAmt026107
IRS990/OtherExpensesGrp/Desc0OTHER
IRS990/OtherExpensesGrp/Desc1PRINTING AND SHIPPING
IRS990/OtherExpensesGrp/Desc2STATE REGISTRATION FEES
IRS990/OtherExpensesGrp/Desc3PAYROLL PROCESSING FEES
IRS990/OtherExpensesGrp/FundraisingAmt03398
IRS990/OtherExpensesGrp/FundraisingAmt14149
IRS990/OtherExpensesGrp/FundraisingAmt20
IRS990/OtherExpensesGrp/FundraisingAmt30
IRS990/OtherExpensesGrp/ManagementAndGeneralAmt0727
IRS990/OtherExpensesGrp/ManagementAndGeneralAmt1455
IRS990/OtherExpensesGrp/ManagementAndGeneralAmt23204
IRS990/OtherExpensesGrp/ManagementAndGeneralAmt31849
IRS990/OtherExpensesGrp/ProgramServicesAmt01811
IRS990/OtherExpensesGrp/ProgramServicesAmt1302
IRS990/OtherExpensesGrp/ProgramServicesAmt20
IRS990/OtherExpensesGrp/TotalAmt05936
IRS990/OtherExpensesGrp/TotalAmt14906
IRS990/OtherExpensesGrp/TotalAmt23204
IRS990/OtherExpensesGrp/TotalAmt31849
IRS990/OtherSalariesAndWagesGrp/FundraisingAmt049518
IRS990/OtherSalariesAndWagesGrp/ManagementAndGeneralAmt033439
IRS990/OtherSalariesAndWagesGrp/ProgramServicesAmt034543
IRS990/OtherSalariesAndWagesGrp/TotalAmt0117500
IRS990/OwnWebsiteInd0X
IRS990/PartialLiquidationInd00
IRS990/PayPremiumsPrsnlBnftCntrctInd00
IRS990/PayrollTaxesGrp/FundraisingAmt03965
IRS990/PayrollTaxesGrp/ManagementAndGeneralAmt02677
IRS990/PayrollTaxesGrp/ProgramServicesAmt02766
IRS990/PayrollTaxesGrp/TotalAmt09408
IRS990/PoliticalCampaignActyInd00
IRS990/PrincipalOfficerNm0RICHARD LABUDA
IRS990/ProfessionalFundraisingInd00
IRS990/ProgramServiceRevenueGrp/BusinessCd0900099
IRS990/ProgramServiceRevenueGrp/Desc0PROGRAM RELATED SALES
IRS990/ProgramServiceRevenueGrp/RelatedOrExemptFuncIncomeAmt08042
IRS990/ProgramServiceRevenueGrp/TotalRevenueColumnAmt08042
IRS990/ProgramServiceRevenueGrp/UnrelatedBusinessRevenueAmt00
IRS990/ProhibitedTaxShelterTransInd00
IRS990/PYBenefitsPaidToMembersAmt00
IRS990/PYContributionsGrantsAmt0627383
IRS990/PYExcessBenefitTransInd00
IRS990/PYGrantsAndSimilarPaidAmt0403615
IRS990/PYInvestmentIncomeAmt0152
IRS990/PYOtherExpensesAmt075487
IRS990/PYOtherRevenueAmt0-73387
IRS990/PYProgramServiceRevenueAmt03689
IRS990/PYRevenuesLessExpensesAmt0-68780
IRS990/PYSalariesCompEmpBnftPaidAmt0147515
IRS990/PYTotalExpensesAmt0626617
IRS990/PYTotalProfFndrsngExpnsAmt00
IRS990/PYTotalRevenueAmt0557837
IRS990/QuidProQuoContributionsInd01
IRS990/QuidProQuoContriDisclInd01
IRS990/RcvFndsToPayPrsnlBnftCntrctInd00
IRS990/ReconcilationRevenueExpnssAmt0107615
IRS990/RegularMonitoringEnfrcInd01
IRS990/RelatedEntityInd00
IRS990/RelatedOrganizationCtrlEntInd00
IRS990/ReportInvestmentsOtherSecInd00
IRS990/ReportLandBuildingEquipmentInd00
IRS990/ReportOtherAssetsInd00
IRS990/ReportOtherLiabilitiesInd00
IRS990/ReportProgramRelatedInvstInd00
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearAmt0571308
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus1YearAmt0700833
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus2YearsAmt0737380
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus3YearsAmt0890302
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus4YearsAmt0889026
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/TotalAmt03788849
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearAmt0123
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus1YearAmt0152
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus2YearsAmt0202
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus3YearsAmt0458
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus4YearsAmt0524
IRS990ScheduleA/GrossInvestmentIncome170Grp/TotalAmt01459
IRS990ScheduleA/OtherIncome170Grp/CurrentTaxYearMinus1YearAmt03689
IRS990ScheduleA/OtherIncome170Grp/TotalAmt03689
IRS990ScheduleA/PublicOrganization170Ind0X
IRS990ScheduleA/PublicSupportCY170Pct00.94080
IRS990ScheduleA/PublicSupportPY170Pct00.95600
IRS990ScheduleA/PublicSupportTotal170Amt03569471
IRS990ScheduleA/SubstantialContributorsTotAmt0219378
IRS990ScheduleA/ThirtyThrPctSuprtTestsCY170Ind0X
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearAmt0571308
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus1YearAmt0700833
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus2YearsAmt0737380
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus3YearsAmt0890302
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus4YearsAmt0889026
IRS990ScheduleA/TotalCalendarYear170Grp/TotalAmt03788849
IRS990ScheduleA/TotalSupportAmt03793997
IRS990/ScheduleBRequiredInd01
IRS990ScheduleD/ExpensesNotReportedAmt097202
IRS990ScheduleD/ExpensesNotRptFinclStmtAmt00
IRS990ScheduleD/ExpensesSubtotalAmt0374655
IRS990ScheduleD/FootnoteTextInd0X
IRS990ScheduleD/OtherExpensesIncludedAmt097202
IRS990ScheduleD/OtherRevenueAmt097202
IRS990ScheduleD/RevenueNotReportedAmt097202
IRS990ScheduleD/RevenueNotReportedFinclStmtAmt00
IRS990ScheduleD/RevenueSubtotalAmt0482270
IRS990ScheduleD/SupplementalInformationDetail/ExplanationTxt0THE FOUNDATION IS EXEMPT FROM FEDERAL INCOME TAXES UNDER SECTION 501(C)(3) OF THE INTERNAL REVENUE CODE AND APPLICABLE STATE LAW. MANAGEMENT BELIEVES THAT THERE IS NO LIABILITY RELATED TO UNCERTAIN TAX POSITIONS AT DECEMBER 31, 2018. THE FOUNDATION IS NO LONGER SUBJECT TO TAX EXAMINATIONS FOR TAX PERIODS THROUGH DECEMBER 31, 2015.
IRS990ScheduleD/SupplementalInformationDetail/ExplanationTxt1FUNDRAISING EXPENSES NETTED AGAINST INCOME
IRS990ScheduleD/SupplementalInformationDetail/ExplanationTxt2FUNDRAISING EXPENSES NETTED AGAINST INCOME
IRS990ScheduleD/SupplementalInformationDetail/FormAndLineReferenceDesc0PART X, LINE 2:
IRS990ScheduleD/SupplementalInformationDetail/FormAndLineReferenceDesc1PART XI, LINE 2D - OTHER ADJUSTMENTS:
IRS990ScheduleD/SupplementalInformationDetail/FormAndLineReferenceDesc2PART XII, LINE 2D - OTHER ADJUSTMENTS:
IRS990ScheduleD/TotalBookValueLandBuildingsAmt00
IRS990ScheduleD/TotalExpensesPerForm990Amt0374655
IRS990ScheduleD/TotalRevenuePerForm990Amt0482270
IRS990ScheduleD/TotalRevEtcAuditedFinclStmtAmt0579472
IRS990ScheduleD/TotExpnsEtcAuditedFinclStmtAmt0471857
IRS990ScheduleG/FundraisingEventInformationGrp/CharitableContributionsTotAmt0355743
IRS990ScheduleG/FundraisingEventInformationGrp/CharitableContriEvent1Amt0355743
IRS990ScheduleG/FundraisingEventInformationGrp/DirectExpenseSummaryEventsAmt094573
IRS990ScheduleG/FundraisingEventInformationGrp/Event1Nm0WALK ACROSS AMERICA
IRS990ScheduleG/FundraisingEventInformationGrp/GrossReceiptsEvent1Amt0416013
IRS990ScheduleG/FundraisingEventInformationGrp/GrossReceiptsTotalAmt0416013
IRS990ScheduleG/FundraisingEventInformationGrp/GrossRevenueEvent1Amt060270
IRS990ScheduleG/FundraisingEventInformationGrp/GrossRevenueTotalEventsAmt060270
IRS990ScheduleG/FundraisingEventInformationGrp/NetIncomeSummaryAmt0-34303
IRS990ScheduleG/FundraisingEventInformationGrp/OthDirectExpnssTotalEventsAmt094573
IRS990ScheduleG/FundraisingEventInformationGrp/OtherDirectExpensesEvent1Amt094573
IRS990ScheduleI/GrantRecordsMaintainedInd01
IRS990ScheduleI/RecipientTable/CashGrantAmt0136951
IRS990ScheduleI/RecipientTable/CashGrantAmt10
IRS990ScheduleI/RecipientTable/CashGrantAmt212500
IRS990ScheduleI/RecipientTable/IRCSectionDesc0501(C)(3)
IRS990ScheduleI/RecipientTable/IRCSectionDesc1501(C)(3)
IRS990ScheduleI/RecipientTable/IRCSectionDesc2501(C)(3)
IRS990ScheduleI/RecipientTable/PurposeOfGrantTxt0ONGOING BUDGET FOR CONQUER CHIARI RESEARCH CENTER, ESTABLISH "CHIARI 1000", TARGETING SYRINX
IRS990ScheduleI/RecipientTable/PurposeOfGrantTxt1WE PROPOSE TO UTILIZE NEXT GENERATION SEQUENCING TECHNOLOGY TO: A) IDENTIFY PUTATIVE FUNCTIONAL VARIANTS IN THE CANDIDATE GENES THAT HAVE PREVIOUSLY PROVIDED EVIDENCE OF ASSOCIATION (ALDH1A2, CDX1, FLT1, RDH10 AND MSGN1), AND B) DETERMINE THE EXTENT TO WHICH EDS GENES CONTRIBUTE TO CM-1. THE GENES THAT WILL BE EXAMINED IN THE TARGETED SEQUENCING APPROACH ARE SHOWN IN FIGURE 1. WE WILL PERFORM THE SEQUENCING ON THE CHIARI1000 DATA SET, DEVELOPED BY THE CONQUER CHIARI RESEARCH CENTER (CCRC) AT THE UNIVERSITY OF AKRON, BECAUSE CHIARI1000 REPRESENTS A COLLECTION OF CM-1 PATIENTS THAT ARE INDEPENDENT OF THE SPANISH AND DUKE DATA SETS THAT WERE UTILIZED FOR PREVIOUS GENETIC DISCOVERIES DESCRIBED ABOVE. COUPLING THE CHIARI1000 DATA SET WITH A MORE DETAILED GENETIC TECHNOLOGY (TARGETED NEXT GENERATION SEQUENCING) WILL PROVIDE NOVEL INFORMATION ABOUT SPECIFIC FUNCTIONAL VARIANTS IN SEVERAL CM-1 CANDIDATE GENES. WE WILL EVALUATE THE RELATIONSHIP BETWEEN THE GENETIC VARIANTS IN THESE CANDIDATE
IRS990ScheduleI/RecipientTable/PurposeOfGrantTxt2EXTENSION OF PROJECT TO EVALUATE THE USE OF DENSE MR IMAGING IN CHIARI DIAGNOSIS AND RESEARCH
IRS990ScheduleI/RecipientTable/RecipientBusinessName/BusinessNameLine1Txt0UNIVERSITY OF AKRON
IRS990ScheduleI/RecipientTable/RecipientBusinessName/BusinessNameLine1Txt1DUKE UNIVERSITY SCHOOL OF MEDICINE
IRS990ScheduleI/RecipientTable/RecipientBusinessName/BusinessNameLine1Txt2EMORY UNIVERSITY
IRS990ScheduleI/RecipientTable/RecipientEIN0346002924
IRS990ScheduleI/RecipientTable/RecipientEIN1560532129
IRS990ScheduleI/RecipientTable/RecipientEIN2580566256
IRS990ScheduleI/RecipientTable/USAddress/AddressLine1Txt0284 POLSKY
IRS990ScheduleI/RecipientTable/USAddress/AddressLine1Txt12200 W MAIN STREET SUITE 280
IRS990ScheduleI/RecipientTable/USAddress/AddressLine1Txt2201 DOWMAN DRIVE
IRS990ScheduleI/RecipientTable/USAddress/CityNm0AKRON
IRS990ScheduleI/RecipientTable/USAddress/CityNm1DURHAM
IRS990ScheduleI/RecipientTable/USAddress/CityNm2ATLANTA
IRS990ScheduleI/RecipientTable/USAddress/StateAbbreviationCd0OH
IRS990ScheduleI/RecipientTable/USAddress/StateAbbreviationCd1NC
IRS990ScheduleI/RecipientTable/USAddress/StateAbbreviationCd2GA
IRS990ScheduleI/RecipientTable/USAddress/ZIPCd044325
IRS990ScheduleI/RecipientTable/USAddress/ZIPCd127705
IRS990ScheduleI/RecipientTable/USAddress/ZIPCd230322
IRS990ScheduleI/SupplementalInformationDetail/ExplanationTxt0THE EXECUTIVE DIRECTOR IS RESPONSIBLE FOR OVERSEEING RESEARCH GRANTS. EACH GRANT RECIPIENT MUST SUBMIT A FINAL REPORT DETAILING BOTH THE WORK PERFORMED AND HOW THE FUNDS WERE USED.
IRS990ScheduleI/SupplementalInformationDetail/FormAndLineReferenceDesc0PART I, LINE 2:
IRS990/ScheduleJRequiredInd00
IRS990ScheduleM/AnyPropertyThatMustBeHeldInd00
IRS990ScheduleM/OtherNonCashContriTableGrp/ContributionCnt0387
IRS990ScheduleM/OtherNonCashContriTableGrp/ContributionCnt1169
IRS990ScheduleM/OtherNonCashContriTableGrp/ContributionCnt2103
IRS990ScheduleM/OtherNonCashContriTableGrp/ContributionCnt345
IRS990ScheduleM/OtherNonCashContriTableGrp/Desc0GIFT BASKETS
IRS990ScheduleM/OtherNonCashContriTableGrp/Desc1GIFT CERTIFICATES
IRS990ScheduleM/OtherNonCashContriTableGrp/Desc2MISC. DONATIONS
IRS990ScheduleM/OtherNonCashContriTableGrp/Desc3PROFESSIONAL SERVICES
IRS990ScheduleM/OtherNonCashContriTableGrp/MethodOfDeterminingRevenuesTxt0DONOR VALUE
IRS990ScheduleM/OtherNonCashContriTableGrp/MethodOfDeterminingRevenuesTxt1FACE VALUE
IRS990ScheduleM/OtherNonCashContriTableGrp/MethodOfDeterminingRevenuesTxt2ESTIMATED VALUE
IRS990ScheduleM/OtherNonCashContriTableGrp/MethodOfDeterminingRevenuesTxt3SIMILAR SERVICES
IRS990ScheduleM/OtherNonCashContriTableGrp/NonCashCheckboxInd0X
IRS990ScheduleM/OtherNonCashContriTableGrp/NonCashCheckboxInd1X
IRS990ScheduleM/OtherNonCashContriTableGrp/NonCashCheckboxInd2X
IRS990ScheduleM/OtherNonCashContriTableGrp/NonCashCheckboxInd3X
IRS990ScheduleM/OtherNonCashContriTableGrp/NoncashContributionsRptF990Amt024114
IRS990ScheduleM/OtherNonCashContriTableGrp/NoncashContributionsRptF990Amt18257
IRS990ScheduleM/OtherNonCashContriTableGrp/NoncashContributionsRptF990Amt26647
IRS990ScheduleM/OtherNonCashContriTableGrp/NoncashContributionsRptF990Amt35675
IRS990ScheduleM/ReviewProcessUnusualNCGiftsInd00
IRS990ScheduleM/ThirdPartiesUsedInd00
IRS990/ScheduleORequiredInd01
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt0THE ORGANIZATION DISTRIBUTES A DRAFT 990 TO ALL BOARD DIRECTORS AND THE EXECUTIVE DIRECTOR VIA EMAIL. IF NECESSARY, DISCUSSION IS UNDERTAKEN VIA EMAIL OR BY MEETING IF SO DESIRED BY ANY DIRECTOR. A VOTE IS THEN TAKEN TO AFFIRMATIVELY ADOPT AND FILE THE 990. AT THE NEXT OFFICIAL BOARD MEETING, THE MINUTES REFLECT THE ADOPTION OF THE 990.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt1THE EXECUTIVE DIRECTOR IS RESPONSIBLE FOR DISTRIBUTING AND COLLECTING SIGNED CONFLICT DISCLOSURE STATEMENTS ANNUALLY.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt2THE COMPENSATION COMMITTEE MEETS TO REVIEW THE PERFORMANCE OF THE EXECUTIVE DIRECTOR. THE COMPENSATION COMMITTEE CHAIR SEEKS INPUT FROM THE OTHER DIRECTORS AND THE EXECUTIVE DIRECTOR REGARDING ACCOMPLISHMENTS. THE COMMITTEE ESTABLISHES AN ANNUAL PERFORMANCE BONUS, IF SO EARNED, AND SALARY FOR THE FOLLOWING YEAR. SALARY AND BONUSES ARE BASED IN PART ON THE SIZE OF THE ORGANIZATION IN REVENUE AND COMPARABLE EXECUTIVE DIRECTORS' SALARIES AT SIMILAR SIZED ORGANIZATIONS. THE COMPENSATION COMMITTEE'S RECOMMENDATION IS MADE AT THE FOLLOWING BOARD MEETING AND VOTED ON BY THE BOARD. MINUTES FROM THE COMPENSATION COMMITTEE'S MEETING ARE ENTERED INTO THE RECORD.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt3FORM 990 AND THE 501(C)(3)DETERMINATION LETTER ARE AVAILABLE ON THE WEBSITE. AUDITED FINANCIALS AND POLICIES ARE INCLUDED IN THE ANNUAL REPORT WHICH IS POSTED ON THE WEBSITE.
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc0FORM 990, PART VI, SECTION B, LINE 11B
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc1FORM 990, PART VI, SECTION B, LINE 12C
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc2FORM 990, PART VI, SECTION B, LINE 15A
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc3FORM 990, PART VI, SECTION C, LINE 19
IRS990/SchoolOperatingInd00
IRS990/SignificantChangeInd00
IRS990/SignificantNewProgramSrvcInd00
IRS990/StatesWhereCopyOfReturnIsFldCd0AL
IRS990/StatesWhereCopyOfReturnIsFldCd1AK
IRS990/StatesWhereCopyOfReturnIsFldCd2AR
IRS990/StatesWhereCopyOfReturnIsFldCd3CA
IRS990/StatesWhereCopyOfReturnIsFldCd4CO
IRS990/StatesWhereCopyOfReturnIsFldCd5CT
IRS990/StatesWhereCopyOfReturnIsFldCd6FL
IRS990/StatesWhereCopyOfReturnIsFldCd7GA
IRS990/StatesWhereCopyOfReturnIsFldCd8HI
IRS990/StatesWhereCopyOfReturnIsFldCd9IL
IRS990/StatesWhereCopyOfReturnIsFldCd10KS
IRS990/StatesWhereCopyOfReturnIsFldCd11KY
IRS990/StatesWhereCopyOfReturnIsFldCd12LA
IRS990/StatesWhereCopyOfReturnIsFldCd13ME
IRS990/StatesWhereCopyOfReturnIsFldCd14MD
IRS990/StatesWhereCopyOfReturnIsFldCd15MA
IRS990/StatesWhereCopyOfReturnIsFldCd16MI
IRS990/StatesWhereCopyOfReturnIsFldCd17MN
IRS990/StatesWhereCopyOfReturnIsFldCd18MS
IRS990/StatesWhereCopyOfReturnIsFldCd19NV
IRS990/StatesWhereCopyOfReturnIsFldCd20NH
IRS990/StatesWhereCopyOfReturnIsFldCd21NJ
IRS990/StatesWhereCopyOfReturnIsFldCd22NY
IRS990/StatesWhereCopyOfReturnIsFldCd23NC
IRS990/StatesWhereCopyOfReturnIsFldCd24ND

Document Assets

No mirrored PDF or thumbnail assets are attached yet.

Filings

Displayed year

2018 • Form 990Detailed filing. Detailed filing data is available for this year.

Open filing
Assets
$403,597
Liabilities
$0
Net assets
$403,597
Revenue
$482,270
Expenses
$374,655
Net income
$107,615
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2023Summary only. Only limited summary data is available for this year.$5.41$0.16$5.25$4.00$3.90$0.09
2022XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$5.35$0.19$5.16$4.22$5.56$1.34
2021Summary only. Only limited summary data is available for this year.$6.50$0.00$6.50$5.04$3.07$1.97
2020XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$4.53$0.00$4.53$3.84$3.34$0.49
2019XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$4.04$0.00$4.04$4.61$4.61$0.00
2018Detailed filing. Detailed filing data is available for this year.$4.04$0.00$4.04$4.82$3.75$1.08
2018Summary only. Only limited summary data is available for this year.$4.04$0.00$4.04$4.82$3.75$1.08
2017XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$3.53$0.57$2.96$5.58$6.27$0.69
2016Facts available. Structured filing facts are available, but richer extracted sections are limited.$4.45$0.00$4.45$5.95$6.50$0.55
2015Summary only. Only limited summary data is available for this year.$5.50$0.00$5.50$6.08$8.54$2.46
2014Summary only. Only limited summary data is available for this year.$8.99$1.04$7.96$7.63$5.09$2.54
2013Summary only. Only limited summary data is available for this year.$6.14$0.72$5.42$5.62$6.23$0.61
2012Summary only. Only limited summary data is available for this year.$6.06$0.03$6.03$6.12$5.84$0.28
2011Summary only. Only limited summary data is available for this year.$5.93$0.18$5.76$4.28$4.09$0.18