Liabilities / Assets
61st percentile
Higher debt load relative to assets than 61% of similar nonprofits.
Precomputed percentiles for this filing year versus similar nonprofits in the same peer cohort.
Liabilities / Assets
61st percentile
Higher debt load relative to assets than 61% of similar nonprofits.
Liabilities / Revenue
66th percentile
Higher debt load relative to revenue than 66% of similar nonprofits.
Net Margin
90th percentile
Higher net margin than 90% of similar nonprofits.
Top Officer Pay
84th percentile
Higher top officer pay than 84% of similar nonprofits.
Top officer pay equals 7.4% of source-year revenue.
Asset Growth
92nd percentile
Faster asset growth than 92% of similar nonprofits.
Revenue Growth
93rd percentile
Faster revenue growth than 93% of similar nonprofits.
Assets
Up$3,186,526
Up $1,434,125 (+82%) from 2020
Net Assets
Up$2,747,149
Up $1,167,661 (+74%) from 2020
Liabilities
Up$439,377
Up $266,464 (+154%) from 2020
Revenue
Up$2,011,124
Up $1,294,530 (+181%) from 2020
Expenses
Up$843,231
Up $517,886 (+159%) from 2020
Net Income
Up$1,167,893
Up $776,644 (+199%) from 2020
To provide the leadership and resources needed to support increased research, accelerated diagnosis, improved health, and ultimately a cure for primary ciliary dyskinesia (pcd).
| Line | Beginning | End | Change |
|---|---|---|---|
| Assets | |||
| Cash and Non-Interest-Bearing Accounts | $1,713,343 | $2,746,140 | ▲ $1,032,797 |
| Pledges and Grants Receivable | $25,650 | $415,860 | ▲ $390,210 |
| Investments in Publicly Traded Securities | $5,175 | $15,437 | ▲ $10,262 |
| Prepaid Expenses and Deferred Charges | $8,233 | $9,089 | ▲ $856 |
| Total Assets | $1,752,401 | $3,186,526 | ▲ $1,434,125 |
| Liabilities | |||
| Grants Payable | - | $274,957 | - |
| Mortgage Notes Payable Secured by Investment Property | $150,000 | $150,000 | → $0 |
| Accounts Payable and Accrued Expenses | $21,218 | $8,600 | ▼ $12,618 |
| Other Liabilities | $1,695 | $5,820 | ▲ $4,125 |
| Total Liabilities | $172,913 | $439,377 | ▲ $266,464 |
| Net Assets / Fund Balance | |||
| Net Assets Without Donor Restrictions | $1,579,488 | $2,156,289 | ▲ $576,801 |
| Net Assets With Donor Restrictions | - | $590,860 | - |
| Total Net Assets Fund Balance | $1,579,488 | $2,747,149 | ▲ $1,167,661 |
| Total Liabilities and Net Assets / Fund Balance | $1,752,401 | $3,186,526 | ▲ $1,434,125 |
| Name | Title | Full / Part Time | Base | Total |
|---|---|---|---|---|
| Michele Manion | Exec Dir, Pr | FT | $149,000 | $149,000 |
| Lynn Ehrne | Director, Se | FT | $54,750 | $54,750 |
| Name | Title |
|---|---|
| Bill Anton | Chair |
| Gary Joyner | Vice Chair |
| Dr Margaret Leigh | Director |
| Tori Eastvold | Director |
| Amy Kovler | Director, Tr |
| Carrie Willis | Director, Vi |
| Contribution Type | Contribution Count | Reported Amount |
|---|---|---|
| Securities Publicly Traded | 2 | $25,554 |
| Total Noncash Contributions | 2 | $25,554 |
| Line Item | Amount |
|---|---|
| Grants and Similar Amounts Paid | $345,057 |
| Salaries, Compensation, and Employee Benefits | $326,180 |
| Other Expenses | $171,994 |
| Total Fundraising Expense | $34,174 |
| Professional Fundraising Fees | $0 |
| Line Item | Program | Management | Fundraising | Total |
|---|---|---|---|---|
| Grants to Domestic Orgs | $315,057 | - | - | $315,057 |
| Current Officers, Directors, Trustees, and Key Employees | $152,813 | $50,937 | - | $203,750 |
| Other Salaries and Wages | $74,250 | $24,750 | - | $99,000 |
| Conferences and Meetings | $28,502 | - | $17,290 | $45,792 |
| Fees for Services Other | $42,445 | - | - | $42,445 |
| Foreign Grants | $30,000 | - | - | $30,000 |
| Payroll Taxes | $17,573 | $5,857 | - | $23,430 |
| Fees for Services Accounting | $1,281 | $9,027 | - | $10,308 |
| Insurance | $5,481 | $1,827 | - | $7,308 |
| Office Expenses | $4,094 | $1,364 | - | $5,458 |
| Interest | - | $4,125 | - | $4,125 |
| Information Technology | $1,086 | $362 | $2,513 | $3,961 |
| Other Expenses | $4,085 | $1,362 | $3,419 | $3,419 |
| All Other Expenses | $119 | - | - | $119 |
| Advertising | $10 | - | - | $10 |
| Total Functional Expenses | $709,446 | $99,611 | $34,174 | $843,231 |
| Line Item | Amount |
|---|---|
| Expenses per Audited Statements | $843,231 |
| Total Expenses per Audited Statements | $843,231 |
| Total Expenses per Form 990 | $843,231 |
| Recipient | Location | Category | Purpose | Amount |
|---|---|---|---|---|
| Vanderbilt University Medical Cente | Dallas, TX | - | Registry Support | $304,957 |
| Line Item | Amount |
|---|---|
| Professional Fundraising Fees | $0 |
| Liability | Amount |
|---|---|
| Accrued Interest | $5,820 |
“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 is prepared by an independent cpa firm. The 990 is distributed to all board members for comment and a vote to approve before filing.”
“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.”
“No documents available to the public”
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/AccountantCompileOrReviewInd | 0 | false |
| IRS990/AccountsPayableAccrExpnssGrp/BOYAmt | 0 | 21218 |
| IRS990/AccountsPayableAccrExpnssGrp/EOYAmt | 0 | 8600 |
| IRS990/ActivitiesConductedPrtshpInd | 0 | false |
| IRS990/ActivityOrMissionDesc | 0 | TO PROVIDE THE LEADERSHIP AND RESOURCES NEEDED TO SUPPORT INCREASED RESEARCH, ACCELERATED DIAGNOSIS, IMPROVED HEALTH, AND ULTIMATELY A CURE FOR PRIMARY CILIARY DYSKINESIA (PCD). |
| IRS990/AdvertisingGrp/ProgramServicesAmt | 0 | 10 |
| IRS990/AdvertisingGrp/TotalAmt | 0 | 10 |
| IRS990/AllOtherContributionsAmt | 0 | 1969272 |
| IRS990/AllOtherExpensesGrp/ProgramServicesAmt | 0 | 119 |
| IRS990/AllOtherExpensesGrp/TotalAmt | 0 | 119 |
| IRS990/AnnualDisclosureCoveredPrsnInd | 0 | true |
| IRS990/AuditCommitteeInd | 0 | true |
| IRS990/BackupWthldComplianceInd | 0 | true |
| IRS990/BooksInCareOfDetail/PersonNm | 0 | LYNN EHRNE |
| IRS990/BooksInCareOfDetail/PhoneNum | 0 | 5856218915 |
| IRS990/BooksInCareOfDetail/USAddress/AddressLine1Txt | 0 | 61 LAKE MEADOW DR |
| IRS990/BooksInCareOfDetail/USAddress/CityNm | 0 | ROCHESTER |
| IRS990/BooksInCareOfDetail/USAddress/StateAbbreviationCd | 0 | NY |
| IRS990/BooksInCareOfDetail/USAddress/ZIPCd | 0 | 14612 |
| IRS990/BusinessRlnWith35CtrlEntInd | 0 | false |
| IRS990/BusinessRlnWithFamMemInd | 0 | false |
| IRS990/BusinessRlnWithOrgMemInd | 0 | false |
| IRS990/CashNonInterestBearingGrp/BOYAmt | 0 | 1713343 |
| IRS990/CashNonInterestBearingGrp/EOYAmt | 0 | 2746140 |
| IRS990/ChangeToOrgDocumentsInd | 0 | false |
| IRS990/CollectionsOfArtInd | 0 | false |
| IRS990/CompCurrentOfcrDirectorsGrp/ManagementAndGeneralAmt | 0 | 50937 |
| IRS990/CompCurrentOfcrDirectorsGrp/ProgramServicesAmt | 0 | 152813 |
| IRS990/CompCurrentOfcrDirectorsGrp/TotalAmt | 0 | 203750 |
| IRS990/CompensationFromOtherSrcsInd | 0 | false |
| IRS990/CompensationProcessCEOInd | 0 | false |
| IRS990/CompensationProcessOtherInd | 0 | false |
| IRS990/ConferencesMeetingsGrp/FundraisingAmt | 0 | 17290 |
| IRS990/ConferencesMeetingsGrp/ProgramServicesAmt | 0 | 28502 |
| IRS990/ConferencesMeetingsGrp/TotalAmt | 0 | 45792 |
| IRS990/ConflictOfInterestPolicyInd | 0 | true |
| IRS990/ConservationEasementsInd | 0 | false |
| IRS990/ConsolidatedAuditFinclStmtInd | 0 | false |
| IRS990/CreditCounselingInd | 0 | false |
| IRS990/CYBenefitsPaidToMembersAmt | 0 | 0 |
| IRS990/CYContributionsGrantsAmt | 0 | 2000374 |
| IRS990/CYGrantsAndSimilarPaidAmt | 0 | 345057 |
| IRS990/CYInvestmentIncomeAmt | 0 | 693 |
| IRS990/CYOtherExpensesAmt | 0 | 171994 |
| IRS990/CYOtherRevenueAmt | 0 | 0 |
| IRS990/CYProgramServiceRevenueAmt | 0 | 10057 |
| IRS990/CYRevenuesLessExpensesAmt | 0 | 1167893 |
| IRS990/CYSalariesCompEmpBnftPaidAmt | 0 | 326180 |
| IRS990/CYTotalExpensesAmt | 0 | 843231 |
| IRS990/CYTotalFundraisingExpenseAmt | 0 | 34174 |
| IRS990/CYTotalProfFndrsngExpnsAmt | 0 | 0 |
| IRS990/CYTotalRevenueAmt | 0 | 2011124 |
| IRS990/DecisionsSubjectToApprovaInd | 0 | false |
| IRS990/DeductibleArtContributionInd | 0 | false |
| IRS990/DeductibleNonCashContriInd | 0 | true |
| IRS990/DelegationOfMgmtDutiesInd | 0 | false |
| IRS990/Desc | 0 | CONDUCTED REGIONAL SUPPORT MEETINGS TO PROVIDE INFORMATION TO INDIVIDUALS AFFLICTED WITH PCD. |
| IRS990/DescribedInSection501c3Ind | 0 | true |
| IRS990/DisregardedEntityInd | 0 | false |
| IRS990/DocumentRetentionPolicyInd | 0 | true |
| IRS990/DoingBusinessAsName/BusinessNameLine1Txt | 0 | PCD FOUNDATION |
| IRS990/DonorAdvisedFundInd | 0 | false |
| IRS990/DonorRestrictionNetAssetsGrp/EOYAmt | 0 | 590860 |
| IRS990/DonorRstrOrQuasiEndowmentsInd | 0 | false |
| IRS990/ElectionOfBoardMembersInd | 0 | false |
| IRS990/EmployeeCnt | 0 | 3 |
| IRS990/EmploymentTaxReturnsFiledInd | 0 | true |
| IRS990/EngagedInExcessBenefitTransInd | 0 | false |
| IRS990/ExpenseAmt | 0 | 16998 |
| IRS990/FamilyOrBusinessRlnInd | 0 | false |
| IRS990/FeesForServicesAccountingGrp/ManagementAndGeneralAmt | 0 | 9027 |
| IRS990/FeesForServicesAccountingGrp/ProgramServicesAmt | 0 | 1281 |
| IRS990/FeesForServicesAccountingGrp/TotalAmt | 0 | 10308 |
| IRS990/FeesForServicesOtherGrp/ProgramServicesAmt | 0 | 42445 |
| IRS990/FeesForServicesOtherGrp/TotalAmt | 0 | 42445 |
| IRS990/ForeignActivitiesInd | 0 | false |
| IRS990/ForeignFinancialAccountInd | 0 | false |
| IRS990/ForeignGrantsGrp/ProgramServicesAmt | 0 | 30000 |
| IRS990/ForeignGrantsGrp/TotalAmt | 0 | 30000 |
| IRS990/ForeignOfficeInd | 0 | false |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 0 | 40.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 1 | 40.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 2 | 5.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 3 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 4 | 5.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 5 | 5.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 6 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 7 | 4.00 |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 0 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 1 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 2 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 3 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 4 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 5 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 6 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 7 | X |
| IRS990/Form990PartVIISectionAGrp/OfficerInd | 0 | X |
| IRS990/Form990PartVIISectionAGrp/OfficerInd | 1 | X |
| IRS990/Form990PartVIISectionAGrp/OfficerInd | 2 | X |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 0 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 1 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 2 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 3 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 4 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 5 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 6 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 7 | 0 |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 0 | MICHELE MANION |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 1 | LYNN EHRNE |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 2 | BILL ANTON |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 3 | TORI EASTVOLD |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 4 | GARY JOYNER |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 5 | AMY KOVLER |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 6 | DR MARGARET LEIGH |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 7 | CARRIE WILLIS |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 0 | 149000 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 1 | 54750 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 2 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 3 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 4 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 5 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 6 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 7 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 0 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 1 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 2 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 3 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 4 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 5 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 6 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 7 | 0 |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 0 | EXEC DIR, PR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 1 | DIRECTOR, SE |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 2 | CHAIR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 3 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 4 | VICE CHAIR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 5 | DIRECTOR, TR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 6 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 7 | DIRECTOR, VI |
| IRS990/Form990ProvidedToGvrnBodyInd | 0 | true |
| IRS990/FormationYr | 0 | 2004 |
| IRS990/FormerOfcrEmployeesListedInd | 0 | false |
| IRS990/FSAuditedBasisGrp/SeparateBasisFinclStmtInd | 0 | X |
| IRS990/FSAuditedInd | 0 | true |
| IRS990/FundraisingActivitiesInd | 0 | false |
| IRS990/GainOrLossGrp/SecuritiesAmt | 0 | 576 |
| IRS990/GamingActivitiesInd | 0 | false |
| IRS990/GoverningBodyVotingMembersCnt | 0 | 8 |
| IRS990/GovernmentGrantsAmt | 0 | 31102 |
| IRS990/GrantsPayableGrp/EOYAmt | 0 | 274957 |
| IRS990/GrantsToDomesticOrgsGrp/ProgramServicesAmt | 0 | 315057 |
| IRS990/GrantsToDomesticOrgsGrp/TotalAmt | 0 | 315057 |
| IRS990/GrantsToIndividualsInd | 0 | false |
| IRS990/GrantsToOrganizationsInd | 0 | true |
| IRS990/GrantToRelatedPersonInd | 0 | false |
| IRS990/GrossAmountSalesAssetsGrp/SecuritiesAmt | 0 | 15636 |
| IRS990/GrossReceiptsAmt | 0 | 2026184 |
| IRS990/GroupReturnForAffiliatesInd | 0 | false |
| IRS990/IncludeFIN48FootnoteInd | 0 | false |
| IRS990/IndependentAuditFinclStmtInd | 0 | true |
| IRS990/IndependentVotingMemberCnt | 0 | 6 |
| IRS990/IndivRcvdGreaterThan100KCnt | 0 | 1 |
| IRS990/IndoorTanningServicesInd | 0 | false |
| IRS990/InfoInScheduleOPartVIInd | 0 | X |
| IRS990/InformationTechnologyGrp/FundraisingAmt | 0 | 2513 |
| IRS990/InformationTechnologyGrp/ManagementAndGeneralAmt | 0 | 362 |
| IRS990/InformationTechnologyGrp/ProgramServicesAmt | 0 | 1086 |
| IRS990/InformationTechnologyGrp/TotalAmt | 0 | 3961 |
| IRS990/InsuranceGrp/ManagementAndGeneralAmt | 0 | 1827 |
| IRS990/InsuranceGrp/ProgramServicesAmt | 0 | 5481 |
| IRS990/InsuranceGrp/TotalAmt | 0 | 7308 |
| IRS990/InterestGrp/ManagementAndGeneralAmt | 0 | 4125 |
| IRS990/InterestGrp/TotalAmt | 0 | 4125 |
| IRS990/InvestmentIncomeGrp/ExclusionAmt | 0 | 117 |
| IRS990/InvestmentIncomeGrp/TotalRevenueColumnAmt | 0 | 117 |
| IRS990/InvestmentInJointVentureInd | 0 | false |
| IRS990/InvestmentsPubTradedSecGrp/BOYAmt | 0 | 5175 |
| IRS990/InvestmentsPubTradedSecGrp/EOYAmt | 0 | 15437 |
| IRS990/IRPDocumentCnt | 0 | 1 |
| IRS990/IRPDocumentW2GCnt | 0 | 0 |
| IRS990/LegalDomicileStateCd | 0 | MN |
| IRS990/LessCostOthBasisSalesExpnssGrp/SecuritiesAmt | 0 | 15060 |
| IRS990/LoanOutstandingInd | 0 | false |
| IRS990/LobbyingActivitiesInd | 0 | false |
| IRS990/LocalChaptersInd | 0 | false |
| IRS990/MaterialDiversionOrMisuseInd | 0 | false |
| IRS990/MembersOrStockholdersInd | 0 | false |
| IRS990/MethodOfAccountingAccrualInd | 0 | X |
| IRS990/MinutesOfCommitteesInd | 0 | true |
| IRS990/MinutesOfGoverningBodyInd | 0 | true |
| IRS990/MissionDesc | 0 | TO PROVIDE THE LEADERSHIP AND RESOURCES NEEDED TO SUPPORT INCREASED RESEARCH, ACCELERATED DIAGNOSIS, IMPROVED HEALTH, AND ULTIMATELY A CURE FOR PRIMARY CILIARY DYSKINESIA (PCD). |
| IRS990/MoreThan5000KToIndividualsInd | 0 | false |
| IRS990/MoreThan5000KToOrgInd | 0 | true |
| IRS990/MortgNotesPyblScrdInvstPropGrp/BOYAmt | 0 | 150000 |
| IRS990/MortgNotesPyblScrdInvstPropGrp/EOYAmt | 0 | 150000 |
| IRS990/NetAssetsOrFundBalancesBOYAmt | 0 | 1579488 |
| IRS990/NetAssetsOrFundBalancesEOYAmt | 0 | 2747149 |
| IRS990/NetGainOrLossInvestmentsGrp/RelatedOrExemptFuncIncomeAmt | 0 | 576 |
| IRS990/NetGainOrLossInvestmentsGrp/TotalRevenueColumnAmt | 0 | 576 |
| IRS990/NetUnrlzdGainsLossesInvstAmt | 0 | -232 |
| IRS990/NoDonorRestrictionNetAssetsGrp/BOYAmt | 0 | 1579488 |
| IRS990/NoDonorRestrictionNetAssetsGrp/EOYAmt | 0 | 2156289 |
| IRS990/NoncashContributionsAmt | 0 | 25554 |
| IRS990/NondeductibleContributionsInd | 0 | false |
| IRS990/OfficeExpensesGrp/ManagementAndGeneralAmt | 0 | 1364 |
| IRS990/OfficeExpensesGrp/ProgramServicesAmt | 0 | 4094 |
| IRS990/OfficeExpensesGrp/TotalAmt | 0 | 5458 |
| IRS990/OfficerMailingAddressInd | 0 | true |
| IRS990/OperateHospitalInd | 0 | false |
| IRS990/Organization501c3Ind | 0 | X |
| IRS990/OrganizationFollowsFASB117Ind | 0 | X |
| IRS990/OtherExpensesGrp/Desc | 0 | DUES AND SUBSCRIPTIONS |
| IRS990/OtherExpensesGrp/Desc | 1 | CHARTIABLE REGISTRATIONS |
| IRS990/OtherExpensesGrp/Desc | 2 | TELEPHONE |
| IRS990/OtherExpensesGrp/Desc | 3 | BANK SERVICE CHARGES |
| IRS990/OtherExpensesGrp/FundraisingAmt | 0 | 10952 |
| IRS990/OtherExpensesGrp/FundraisingAmt | 1 | 3419 |
| IRS990/OtherExpensesGrp/ManagementAndGeneralAmt | 0 | 1362 |
| IRS990/OtherExpensesGrp/ProgramServicesAmt | 0 | 32650 |
| IRS990/OtherExpensesGrp/ProgramServicesAmt | 1 | 4085 |
| IRS990/OtherExpensesGrp/TotalAmt | 0 | 32650 |
| IRS990/OtherExpensesGrp/TotalAmt | 1 | 10952 |
| IRS990/OtherExpensesGrp/TotalAmt | 2 | 5447 |
| IRS990/OtherExpensesGrp/TotalAmt | 3 | 3419 |
| IRS990/OtherLiabilitiesGrp/BOYAmt | 0 | 1695 |
| IRS990/OtherLiabilitiesGrp/EOYAmt | 0 | 5820 |
| IRS990/OtherSalariesAndWagesGrp/ManagementAndGeneralAmt | 0 | 24750 |
| IRS990/OtherSalariesAndWagesGrp/ProgramServicesAmt | 0 | 74250 |
| IRS990/OtherSalariesAndWagesGrp/TotalAmt | 0 | 99000 |
| IRS990/OtherWebsiteInd | 0 | X |
| IRS990/PartialLiquidationInd | 0 | false |
| IRS990/PayrollTaxesGrp/ManagementAndGeneralAmt | 0 | 5857 |
| IRS990/PayrollTaxesGrp/ProgramServicesAmt | 0 | 17573 |
| IRS990/PayrollTaxesGrp/TotalAmt | 0 | 23430 |
| IRS990/PledgesAndGrantsReceivableGrp/BOYAmt | 0 | 25650 |
| IRS990/PledgesAndGrantsReceivableGrp/EOYAmt | 0 | 415860 |
| IRS990/PoliticalCampaignActyInd | 0 | false |
| IRS990/PrepaidExpensesDefrdChargesGrp/BOYAmt | 0 | 8233 |
| IRS990/PrepaidExpensesDefrdChargesGrp/EOYAmt | 0 | 9089 |
| IRS990/PrincipalOfficerNm | 0 | MICHELE MANION |
| IRS990/ProfessionalFundraisingInd | 0 | false |
| IRS990/ProgramServiceRevenueGrp/Desc | 0 | SPONSORSHIP FEES |
| IRS990/ProgramServiceRevenueGrp/RelatedOrExemptFuncIncomeAmt | 0 | 10057 |
| IRS990/ProgramServiceRevenueGrp/TotalRevenueColumnAmt | 0 | 10057 |
| IRS990/ProgSrvcAccomActy2Grp/Desc | 0 | 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. |
| IRS990/ProgSrvcAccomActy2Grp/ExpenseAmt | 0 | 88903 |
| IRS990/ProgSrvcAccomActy2Grp/GrantAmt | 0 | 40100 |
| IRS990/ProgSrvcAccomActy3Grp/Desc | 0 | PATIENT REGISTRY AND OTHER DEVELOPMENT COSTS TO DOCUMENT PCD AFFLICTED INDIVIDUALS. THE REGISTRY CAN ONLY BE UPDATED BY QUALIFIED MEDICAL PERSONNEL. |
| IRS990/ProgSrvcAccomActy3Grp/ExpenseAmt | 0 | 603545 |
| IRS990/ProgSrvcAccomActy3Grp/GrantAmt | 0 | 304957 |
| IRS990/ProhibitedTaxShelterTransInd | 0 | false |
| IRS990/PYContributionsGrantsAmt | 0 | 716187 |
| IRS990/PYExcessBenefitTransInd | 0 | false |
| IRS990/PYGrantsAndSimilarPaidAmt | 0 | 36170 |
| IRS990/PYInvestmentIncomeAmt | 0 | 407 |
| IRS990/PYOtherExpensesAmt | 0 | 118874 |
| IRS990/PYRevenuesLessExpensesAmt | 0 | 391249 |
| IRS990/PYSalariesCompEmpBnftPaidAmt | 0 | 170301 |
| IRS990/PYTotalExpensesAmt | 0 | 325345 |
| IRS990/PYTotalRevenueAmt | 0 | 716594 |
| IRS990/ReconcilationRevenueExpnssAmt | 0 | 1167893 |
| IRS990/RegularMonitoringEnfrcInd | 0 | true |
| IRS990/RelatedEntityInd | 0 | false |
| IRS990/RelatedOrganizationCtrlEntInd | 0 | false |
| IRS990/ReportInvestmentsOtherSecInd | 0 | false |
| IRS990/ReportLandBuildingEquipmentInd | 0 | false |
| IRS990/ReportOtherAssetsInd | 0 | false |
| IRS990/ReportOtherLiabilitiesInd | 0 | true |
| IRS990/ReportProgramRelatedInvstInd | 0 | false |
| IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearAmt | 0 | 2000374 |
| IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus1YearAmt | 0 | 716187 |
| IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus2YearsAmt | 0 | 616785 |
| IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus3YearsAmt | 0 | 629306 |
| IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus4YearsAmt | 0 | 834950 |
| IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/TotalAmt | 0 | 4797602 |
| IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearAmt | 0 | 117 |
| IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearMinus1YearAmt | 0 | 105 |
| IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearMinus2YearsAmt | 0 | 104 |
| IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearMinus3YearsAmt | 0 | 70 |
| IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearMinus4YearsAmt | 0 | 34 |
| IRS990ScheduleA/GrossInvestmentIncome509Grp/TotalAmt | 0 | 430 |
| IRS990ScheduleA/GrossReceiptsAdmissionsGrp/CurrentTaxYearAmt | 0 | 10057 |
| IRS990ScheduleA/GrossReceiptsAdmissionsGrp/CurrentTaxYearMinus2YearsAmt | 0 | 51950 |
| IRS990ScheduleA/GrossReceiptsAdmissionsGrp/CurrentTaxYearMinus4YearsAmt | 0 | 12284 |
| IRS990ScheduleA/GrossReceiptsAdmissionsGrp/TotalAmt | 0 | 74291 |
| IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/CurrentTaxYearAmt | 0 | 117 |
| IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/CurrentTaxYearMinus1YearAmt | 0 | 105 |
| IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/CurrentTaxYearMinus2YearsAmt | 0 | 104 |
| IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/CurrentTaxYearMinus3YearsAmt | 0 | 70 |
| IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/CurrentTaxYearMinus4YearsAmt | 0 | 34 |
| IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/TotalAmt | 0 | 430 |
| IRS990ScheduleA/InvestmentIncomeCYPct | 0 | 0.00000 |
| IRS990ScheduleA/InvestmentIncomePYPct | 0 | 0.00000 |
| IRS990ScheduleA/PubliclySupportedOrg509a2Ind | 0 | X |
| IRS990ScheduleA/PublicSupportCY509Pct | 0 | 0.99990 |
| IRS990ScheduleA/PublicSupportPY509Pct | 0 | 0.99990 |
| IRS990ScheduleA/PublicSupportTotal509Amt | 0 | 4871893 |
| IRS990ScheduleA/ThirtyThrPctSuprtTestsCY509Ind | 0 | X |
| IRS990ScheduleA/Total509Grp/CurrentTaxYearAmt | 0 | 2010431 |
| IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus1YearAmt | 0 | 716187 |
| IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus2YearsAmt | 0 | 668735 |
| IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus3YearsAmt | 0 | 629306 |
| IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus4YearsAmt | 0 | 847234 |
| IRS990ScheduleA/Total509Grp/TotalAmt | 0 | 4871893 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearAmt | 0 | 2010548 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus1YearAmt | 0 | 716292 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus2YearsAmt | 0 | 668839 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus3YearsAmt | 0 | 629376 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus4YearsAmt | 0 | 847268 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/TotalAmt | 0 | 4872323 |
| IRS990ScheduleB/ContributorInformationGrp/ContributorBusinessName/BusinessNameLine1 | 0 | RESTRICTED |
| IRS990ScheduleB/ContributorInformationGrp/ContributorNum | 0 | RESTRICTED |
| IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/AddressLine1 | 0 | RESTRICTED |
| IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/AddressLine2 | 0 | RESTRICTED |
| IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/City | 0 | RESTRICTED |
| IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/State | 0 | RESTRICTED |
| IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/ZIPCode | 0 | RESTRICTED |
| IRS990ScheduleB/ContributorInformationGrp/TotalContributionsAmt | 0 | RESTRICTED |
| IRS990/ScheduleBRequiredInd | 0 | true |
| IRS990ScheduleD/ExpensesSubtotalAmt | 0 | 843231 |
| IRS990ScheduleD/NetUnrealizedGainsInvstAmt | 0 | -232 |
| IRS990ScheduleD/OtherLiabilitiesOrgGrp/Amt | 0 | 5820 |
| IRS990ScheduleD/OtherLiabilitiesOrgGrp/Desc | 0 | ACCRUED INTEREST |
| IRS990ScheduleD/RevenueNotReportedAmt | 0 | -232 |
| IRS990ScheduleD/RevenueSubtotalAmt | 0 | 2011124 |
| IRS990ScheduleD/TotalExpensesPerForm990Amt | 0 | 843231 |
| IRS990ScheduleD/TotalLiabilityAmt | 0 | 5820 |
| IRS990ScheduleD/TotalRevenuePerForm990Amt | 0 | 2011124 |
| IRS990ScheduleD/TotalRevEtcAuditedFinclStmtAmt | 0 | 2010892 |
| IRS990ScheduleD/TotExpnsEtcAuditedFinclStmtAmt | 0 | 843231 |
| IRS990ScheduleF/BoycottCountriesInd | 0 | false |
| IRS990ScheduleF/ForeignCorpOwnershipInd | 0 | false |
| IRS990ScheduleF/ForeignPartnershipInd | 0 | false |
| IRS990ScheduleF/GrantsToOrgOutsideUSGrp/CashGrantAmt | 0 | 30000 |
| IRS990ScheduleF/GrantsToOrgOutsideUSGrp/MannerOfCashDisbursementTxt | 0 | CHECK |
| IRS990ScheduleF/GrantsToOrgOutsideUSGrp/PurposeOfGrantTxt | 0 | CLINICAL SUPPORT |
| IRS990ScheduleF/InterestInForeignTrustInd | 0 | false |
| IRS990ScheduleF/PassiveForeignInvestmestCoInd | 0 | false |
| IRS990ScheduleF/TransferToForeignCorpInd | 0 | false |
| IRS990ScheduleI/GrantRecordsMaintainedInd | 0 | true |
| IRS990ScheduleI/RecipientTable/CashGrantAmt | 0 | 304957 |
| IRS990ScheduleI/RecipientTable/PurposeOfGrantTxt | 0 | REGISTRY SUPPORT |
| IRS990ScheduleI/RecipientTable/RecipientBusinessName/BusinessNameLine1Txt | 0 | VANDERBILT UNIVERSITY MEDICAL CENTE |
| IRS990ScheduleI/RecipientTable/USAddress/AddressLine1Txt | 0 | PO BOX 121236 |
| IRS990ScheduleI/RecipientTable/USAddress/CityNm | 0 | DALLAS |
| IRS990ScheduleI/RecipientTable/USAddress/StateAbbreviationCd | 0 | TX |
| IRS990ScheduleI/RecipientTable/USAddress/ZIPCd | 0 | 753121236 |
| IRS990/ScheduleJRequiredInd | 0 | false |
| IRS990ScheduleM/AnyPropertyThatMustBeHeldInd | 0 | false |
| IRS990ScheduleM/ReviewProcessUnusualNCGiftsInd | 0 | false |
| IRS990ScheduleM/SecuritiesPubliclyTradedGrp/ContributionCnt | 0 | 2 |
| IRS990ScheduleM/SecuritiesPubliclyTradedGrp/NonCashCheckboxInd | 0 | X |
| IRS990ScheduleM/SecuritiesPubliclyTradedGrp/NoncashContributionsRptF990Amt | 0 | 25554 |
| IRS990ScheduleM/ThirdPartiesUsedInd | 0 | false |
| IRS990/ScheduleORequiredInd | 0 | false |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 0 | 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 |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 1 | 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. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 2 | 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. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 3 | NO DOCUMENTS AVAILABLE TO THE PUBLIC |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 0 | FORM 990, PAGE 6, PART VI, LINE 9 |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 1 | FORM 990, PAGE 6, PART VI, LINE 11B |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 2 | FORM 990, PAGE 6, PART VI, LINE 12C |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 3 | FORM 990, PAGE 6, PART VI, LINE 19 |
| IRS990/SchoolOperatingInd | 0 | false |
| IRS990/SignificantChangeInd | 0 | false |
| IRS990/SignificantNewProgramSrvcInd | 0 | false |
| IRS990/SubjectToExcsTaxNetInvstIncInd | 0 | false |
| IRS990/SubjectToProxyTaxInd | 0 | false |
| IRS990/SubjToTaxRmnrtnExPrchtPymtInd | 0 | false |
| IRS990/TaxablePartyNotificationInd | 0 | false |
| IRS990/TaxExemptBondsInd | 0 | false |
| IRS990/TerminateOperationsInd | 0 | false |
| IRS990/TotalAssetsBOYAmt | 0 | 1752401 |
| IRS990/TotalAssetsEOYAmt | 0 | 3186526 |
| IRS990/TotalAssetsGrp/BOYAmt | 0 | 1752401 |
| IRS990/TotalAssetsGrp/EOYAmt | 0 | 3186526 |
| IRS990/TotalCompGreaterThan150KInd | 0 | false |
| IRS990/TotalContributionsAmt | 0 | 2000374 |
| IRS990/TotalEmployeeCnt | 0 | 3 |
| IRS990/TotalFunctionalExpensesGrp/FundraisingAmt | 0 | 34174 |
| IRS990/TotalFunctionalExpensesGrp/ManagementAndGeneralAmt | 0 | 99611 |
| IRS990/TotalFunctionalExpensesGrp/ProgramServicesAmt | 0 | 709446 |
| IRS990/TotalFunctionalExpensesGrp/TotalAmt | 0 | 843231 |
| IRS990/TotalGrossUBIAmt | 0 | 0 |
| IRS990/TotalLiabilitiesBOYAmt | 0 | 172913 |
| IRS990/TotalLiabilitiesEOYAmt | 0 | 439377 |
| IRS990/TotalLiabilitiesGrp/BOYAmt | 0 | 172913 |
| IRS990/TotalLiabilitiesGrp/EOYAmt | 0 | 439377 |
| IRS990/TotalNetAssetsFundBalanceGrp/BOYAmt | 0 | 1579488 |
| IRS990/TotalNetAssetsFundBalanceGrp/EOYAmt | 0 | 2747149 |
| IRS990/TotalProgramServiceExpensesAmt | 0 | 709446 |
| IRS990/TotalProgramServiceRevenueAmt | 0 | 10057 |
| IRS990/TotalReportableCompFromOrgAmt | 0 | 203750 |
| IRS990/TotalRevenueGrp/ExclusionAmt | 0 | 117 |
| IRS990/TotalRevenueGrp/RelatedOrExemptFuncIncomeAmt | 0 | 10633 |
| IRS990/TotalRevenueGrp/TotalRevenueColumnAmt | 0 | 2011124 |
| IRS990/TotalVolunteersCnt | 0 | 20 |
| IRS990/TotLiabNetAssetsFundBalanceGrp/BOYAmt | 0 | 1752401 |
| IRS990/TotLiabNetAssetsFundBalanceGrp/EOYAmt | 0 | 3186526 |
| IRS990/TrnsfrExmptNonChrtblRltdOrgInd | 0 | false |
No mirrored PDF or thumbnail assets are attached yet.
Displayed year
2021 • Form 990Detailed filing. Detailed filing data is available for this year.