Liabilities / Assets
56th percentile
Higher debt load relative to assets than 56% of similar nonprofits.
Precomputed percentiles for this filing year versus similar nonprofits in the same peer cohort.
Liabilities / Assets
56th percentile
Higher debt load relative to assets than 56% of similar nonprofits.
Liabilities / Revenue
72nd percentile
Higher debt load relative to revenue than 72% of similar nonprofits.
Net Margin
76th percentile
Higher net margin than 76% of similar nonprofits.
Top Officer Pay
85th percentile
Higher top officer pay than 85% of similar nonprofits.
Top officer pay equals 14.0% of source-year revenue.
Asset Growth
59th percentile
Faster asset growth than 59% of similar nonprofits.
Revenue Growth
8th percentile
Faster revenue growth than 8% of similar nonprofits.
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
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 | $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 |
| Name | Title | Full / Part Time | Base | Other | Total |
|---|---|---|---|---|---|
| Michele Manion | Exec Dir, Pr | FT | $155,000 | - | $155,000 |
| Michele Manion | Exec Dir, President | - | $130,000 | $25,000 | $155,000 |
| Lynn Ehrne | Director, Se | PT | $56,800 | - | $56,800 |
| Name | Title |
|---|---|
| Bill Anton | Chair |
| Gary Joyner | Vice Chair |
| Dr Margaret Leigh | Director |
| Tori Eastvold | Director |
| Amy Kovler | Director, Tr |
| Carrie Willis | Director, Vi |
| Line Item | Amount |
|---|---|
| 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 |
| Line Item | Program | Management | Fundraising | Total |
|---|---|---|---|---|
| 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 |
| Line Item | Amount |
|---|---|
| Expenses per Audited Statements | $827,296 |
| Total Expenses per Audited Statements | $827,296 |
| Total Expenses per Form 990 | $827,296 |
| Recipient | Location | Category | Purpose | Amount |
|---|---|---|---|---|
| Vanderbilt University Medical Cente | Dallas, TX | - | Registry Support | $30,032 |
| University of Michigan | Ann Arbor, MI | - | Saba Award | $20,000 |
| Line Item | Amount |
|---|---|
| Professional Fundraising Fees | $0 |
| Liability | Amount |
|---|---|
| Accrued Interest | $9,945 |
“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”
“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.”
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 | 8600 |
| IRS990/AccountsPayableAccrExpnssGrp/EOYAmt | 0 | 76908 |
| 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 | 1094275 |
| IRS990/AllOtherExpensesGrp/FundraisingAmt | 0 | 4115 |
| IRS990/AllOtherExpensesGrp/ManagementAndGeneralAmt | 0 | 1371 |
| IRS990/AllOtherExpensesGrp/ProgramServicesAmt | 0 | 4181 |
| IRS990/AllOtherExpensesGrp/TotalAmt | 0 | 9667 |
| 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 | 2746140 |
| IRS990/CashNonInterestBearingGrp/EOYAmt | 0 | 3097790 |
| IRS990/ChangeToOrgDocumentsInd | 0 | false |
| IRS990/CollectionsOfArtInd | 0 | false |
| IRS990/CompCurrentOfcrDirectorsGrp/ManagementAndGeneralAmt | 0 | 52950 |
| IRS990/CompCurrentOfcrDirectorsGrp/ProgramServicesAmt | 0 | 158850 |
| IRS990/CompCurrentOfcrDirectorsGrp/TotalAmt | 0 | 211800 |
| IRS990/CompensationFromOtherSrcsInd | 0 | false |
| IRS990/CompensationProcessCEOInd | 0 | false |
| IRS990/CompensationProcessOtherInd | 0 | false |
| IRS990/ConferencesMeetingsGrp/ProgramServicesAmt | 0 | 108573 |
| IRS990/ConferencesMeetingsGrp/TotalAmt | 0 | 108573 |
| IRS990/ConflictOfInterestPolicyInd | 0 | true |
| IRS990/ConservationEasementsInd | 0 | false |
| IRS990/ConsolidatedAuditFinclStmtInd | 0 | false |
| IRS990/CreditCounselingInd | 0 | false |
| IRS990/CYBenefitsPaidToMembersAmt | 0 | 0 |
| IRS990/CYContributionsGrantsAmt | 0 | 1094275 |
| IRS990/CYGrantsAndSimilarPaidAmt | 0 | 97732 |
| IRS990/CYInvestmentIncomeAmt | 0 | 4976 |
| IRS990/CYOtherExpensesAmt | 0 | 377879 |
| IRS990/CYOtherRevenueAmt | 0 | 0 |
| IRS990/CYProgramServiceRevenueAmt | 0 | 10012 |
| IRS990/CYRevenuesLessExpensesAmt | 0 | 281967 |
| IRS990/CYSalariesCompEmpBnftPaidAmt | 0 | 351685 |
| IRS990/CYTotalExpensesAmt | 0 | 827296 |
| IRS990/CYTotalFundraisingExpenseAmt | 0 | 104453 |
| IRS990/CYTotalProfFndrsngExpnsAmt | 0 | 0 |
| IRS990/CYTotalRevenueAmt | 0 | 1109263 |
| IRS990/DecisionsSubjectToApprovaInd | 0 | false |
| IRS990/DeductibleArtContributionInd | 0 | false |
| IRS990/DeductibleNonCashContriInd | 0 | false |
| IRS990/DeferredRevenueGrp/EOYAmt | 0 | 50000 |
| 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/BOYAmt | 0 | 590860 |
| IRS990/DonorRestrictionNetAssetsGrp/EOYAmt | 0 | 461314 |
| IRS990/DonorRstrOrQuasiEndowmentsInd | 0 | false |
| IRS990/ElectionOfBoardMembersInd | 0 | false |
| IRS990/EmployeeCnt | 0 | 3 |
| IRS990/EmploymentTaxReturnsFiledInd | 0 | true |
| IRS990/EngagedInExcessBenefitTransInd | 0 | false |
| IRS990/ExpenseAmt | 0 | 10063 |
| IRS990/FamilyOrBusinessRlnInd | 0 | false |
| IRS990/FeesForServicesAccountingGrp/ManagementAndGeneralAmt | 0 | 3060 |
| IRS990/FeesForServicesAccountingGrp/ProgramServicesAmt | 0 | 7153 |
| IRS990/FeesForServicesAccountingGrp/TotalAmt | 0 | 10213 |
| IRS990/FeesForServicesLegalGrp/ProgramServicesAmt | 0 | 6356 |
| IRS990/FeesForServicesLegalGrp/TotalAmt | 0 | 6356 |
| IRS990/FeesForServicesOtherGrp/ProgramServicesAmt | 0 | 56018 |
| IRS990/FeesForServicesOtherGrp/TotalAmt | 0 | 56018 |
| IRS990/ForeignActivitiesInd | 0 | false |
| IRS990/ForeignFinancialAccountInd | 0 | false |
| IRS990/ForeignGrantsGrp/ProgramServicesAmt | 0 | 45000 |
| IRS990/ForeignGrantsGrp/TotalAmt | 0 | 45000 |
| IRS990/ForeignOfficeInd | 0 | false |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 0 | 40.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 1 | 4.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 2 | 40.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 3 | 5.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 4 | 5.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 5 | 1.00 |
| 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 | CARRIE WILLIS |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 2 | AMY KOVLER |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 3 | LYNN EHRNE |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 4 | BILL ANTON |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 5 | GARY JOYNER |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 6 | TORI EASTVOLD |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 7 | DR MARGARET LEIGH |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 0 | 155000 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 1 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 2 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 3 | 56800 |
| 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, VI |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 2 | DIRECTOR, TR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 3 | DIRECTOR, SE |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 4 | CHAIR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 5 | VICE CHAIR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 6 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 7 | DIRECTOR |
| 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 | -884 |
| IRS990/GamingActivitiesInd | 0 | false |
| IRS990/GoverningBodyVotingMembersCnt | 0 | 8 |
| IRS990/GrantsPayableGrp/BOYAmt | 0 | 274957 |
| IRS990/GrantsPayableGrp/EOYAmt | 0 | 30000 |
| IRS990/GrantsToDomesticOrgsGrp/ProgramServicesAmt | 0 | 52732 |
| IRS990/GrantsToDomesticOrgsGrp/TotalAmt | 0 | 52732 |
| IRS990/GrantsToIndividualsInd | 0 | false |
| IRS990/GrantsToOrganizationsInd | 0 | true |
| IRS990/GrantToRelatedPersonInd | 0 | false |
| IRS990/GrossAmountSalesAssetsGrp/SecuritiesAmt | 0 | 14634 |
| IRS990/GrossReceiptsAmt | 0 | 1124781 |
| 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/InfoInScheduleOPartIIIInd | 0 | X |
| IRS990/InfoInScheduleOPartVIInd | 0 | X |
| IRS990/InformationTechnologyGrp/FundraisingAmt | 0 | 2555 |
| IRS990/InformationTechnologyGrp/ManagementAndGeneralAmt | 0 | 733 |
| IRS990/InformationTechnologyGrp/ProgramServicesAmt | 0 | 2199 |
| IRS990/InformationTechnologyGrp/TotalAmt | 0 | 5487 |
| IRS990/InsuranceGrp/ManagementAndGeneralAmt | 0 | 1900 |
| IRS990/InsuranceGrp/ProgramServicesAmt | 0 | 5702 |
| IRS990/InsuranceGrp/TotalAmt | 0 | 7602 |
| IRS990/InterestGrp/ManagementAndGeneralAmt | 0 | 4125 |
| IRS990/InterestGrp/ProgramServicesAmt | 0 | 5043 |
| IRS990/InterestGrp/TotalAmt | 0 | 9168 |
| IRS990/InvestmentIncomeGrp/ExclusionAmt | 0 | 5860 |
| IRS990/InvestmentIncomeGrp/TotalRevenueColumnAmt | 0 | 5860 |
| IRS990/InvestmentInJointVentureInd | 0 | false |
| IRS990/InvestmentsPubTradedSecGrp/BOYAmt | 0 | 15437 |
| IRS990/IRPDocumentCnt | 0 | 1 |
| IRS990/IRPDocumentW2GCnt | 0 | 0 |
| IRS990/LegalDomicileStateCd | 0 | MN |
| IRS990/LessCostOthBasisSalesExpnssGrp/SecuritiesAmt | 0 | 15518 |
| 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 | 2747149 |
| IRS990/NetAssetsOrFundBalancesEOYAmt | 0 | 3029197 |
| IRS990/NetGainOrLossInvestmentsGrp/RelatedOrExemptFuncIncomeAmt | 0 | -884 |
| IRS990/NetGainOrLossInvestmentsGrp/TotalRevenueColumnAmt | 0 | -884 |
| IRS990/NetUnrlzdGainsLossesInvstAmt | 0 | 81 |
| IRS990/NoDonorRestrictionNetAssetsGrp/BOYAmt | 0 | 2156289 |
| IRS990/NoDonorRestrictionNetAssetsGrp/EOYAmt | 0 | 2567883 |
| IRS990/NondeductibleContributionsInd | 0 | false |
| IRS990/OfficeExpensesGrp/ManagementAndGeneralAmt | 0 | 884 |
| IRS990/OfficeExpensesGrp/ProgramServicesAmt | 0 | 2653 |
| IRS990/OfficeExpensesGrp/TotalAmt | 0 | 3537 |
| 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 | BAD DEBTS |
| IRS990/OtherExpensesGrp/Desc | 2 | BANK SERVICE CHARGES |
| IRS990/OtherExpensesGrp/Desc | 3 | CHARTIABLE REGISTRATIONS |
| IRS990/OtherExpensesGrp/FundraisingAmt | 0 | 12941 |
| IRS990/OtherExpensesGrp/FundraisingAmt | 1 | 6257 |
| IRS990/OtherExpensesGrp/ManagementAndGeneralAmt | 0 | 25000 |
| IRS990/OtherExpensesGrp/ProgramServicesAmt | 0 | 26734 |
| IRS990/OtherExpensesGrp/TotalAmt | 0 | 26734 |
| IRS990/OtherExpensesGrp/TotalAmt | 1 | 25000 |
| IRS990/OtherExpensesGrp/TotalAmt | 2 | 12941 |
| IRS990/OtherExpensesGrp/TotalAmt | 3 | 6257 |
| IRS990/OtherLiabilitiesGrp/BOYAmt | 0 | 5820 |
| IRS990/OtherLiabilitiesGrp/EOYAmt | 0 | 9945 |
| IRS990/OtherSalariesAndWagesGrp/ProgramServicesAmt | 0 | 115000 |
| IRS990/OtherSalariesAndWagesGrp/TotalAmt | 0 | 115000 |
| IRS990/OtherWebsiteInd | 0 | X |
| IRS990/PartialLiquidationInd | 0 | false |
| IRS990/PayrollTaxesGrp/ManagementAndGeneralAmt | 0 | 4031 |
| IRS990/PayrollTaxesGrp/ProgramServicesAmt | 0 | 20854 |
| IRS990/PayrollTaxesGrp/TotalAmt | 0 | 24885 |
| IRS990/PledgesAndGrantsReceivableGrp/BOYAmt | 0 | 415860 |
| IRS990/PledgesAndGrantsReceivableGrp/EOYAmt | 0 | 241337 |
| IRS990/PoliticalCampaignActyInd | 0 | false |
| IRS990/PrepaidExpensesDefrdChargesGrp/BOYAmt | 0 | 9089 |
| IRS990/PrepaidExpensesDefrdChargesGrp/EOYAmt | 0 | 6923 |
| IRS990/PrincipalOfficerNm | 0 | MICHELE MANION |
| IRS990/ProfessionalFundraisingInd | 0 | false |
| IRS990/ProgramServiceRevenueGrp/Desc | 0 | SPONSORSHIP FEES |
| IRS990/ProgramServiceRevenueGrp/RelatedOrExemptFuncIncomeAmt | 0 | 10012 |
| IRS990/ProgramServiceRevenueGrp/TotalRevenueColumnAmt | 0 | 10012 |
| 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 | 171990 |
| IRS990/ProgSrvcAccomActy2Grp/GrantAmt | 0 | 67700 |
| 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 | 313192 |
| IRS990/ProgSrvcAccomActy3Grp/GrantAmt | 0 | 30032 |
| IRS990/ProgSrvcAccomActyOtherGrp/Desc | 0 | 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. |
| IRS990/ProgSrvcAccomActyOtherGrp/ExpenseAmt | 0 | 133544 |
| IRS990/ProhibitedTaxShelterTransInd | 0 | false |
| IRS990/PYContributionsGrantsAmt | 0 | 2000374 |
| IRS990/PYExcessBenefitTransInd | 0 | false |
| IRS990/PYGrantsAndSimilarPaidAmt | 0 | 345057 |
| IRS990/PYInvestmentIncomeAmt | 0 | 693 |
| IRS990/PYOtherExpensesAmt | 0 | 171994 |
| IRS990/PYProgramServiceRevenueAmt | 0 | 10057 |
| IRS990/PYRevenuesLessExpensesAmt | 0 | 1167893 |
| IRS990/PYSalariesCompEmpBnftPaidAmt | 0 | 326180 |
| IRS990/PYTotalExpensesAmt | 0 | 843231 |
| IRS990/PYTotalRevenueAmt | 0 | 2011124 |
| IRS990/ReconcilationRevenueExpnssAmt | 0 | 281967 |
| 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 |
| IRS990/RevenueAmt | 0 | 10012 |
| IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearAmt | 0 | 1094275 |
| IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus1YearAmt | 0 | 2000374 |
| IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus2YearsAmt | 0 | 716187 |
| IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus3YearsAmt | 0 | 616785 |
| IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus4YearsAmt | 0 | 629306 |
| IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/TotalAmt | 0 | 5056927 |
| IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearAmt | 0 | 5860 |
| IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearMinus1YearAmt | 0 | 117 |
| IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearMinus2YearsAmt | 0 | 105 |
| IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearMinus3YearsAmt | 0 | 104 |
| IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearMinus4YearsAmt | 0 | 70 |
| IRS990ScheduleA/GrossInvestmentIncome509Grp/TotalAmt | 0 | 6256 |
| IRS990ScheduleA/GrossReceiptsAdmissionsGrp/CurrentTaxYearAmt | 0 | 10012 |
| IRS990ScheduleA/GrossReceiptsAdmissionsGrp/CurrentTaxYearMinus1YearAmt | 0 | 10057 |
| IRS990ScheduleA/GrossReceiptsAdmissionsGrp/CurrentTaxYearMinus3YearsAmt | 0 | 51950 |
| IRS990ScheduleA/GrossReceiptsAdmissionsGrp/TotalAmt | 0 | 72019 |
| IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/CurrentTaxYearAmt | 0 | 5860 |
| IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/CurrentTaxYearMinus1YearAmt | 0 | 117 |
| IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/CurrentTaxYearMinus2YearsAmt | 0 | 105 |
| IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/CurrentTaxYearMinus3YearsAmt | 0 | 104 |
| IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/CurrentTaxYearMinus4YearsAmt | 0 | 70 |
| IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/TotalAmt | 0 | 6256 |
| IRS990ScheduleA/InvestmentIncomeCYPct | 0 | 0.00000 |
| IRS990ScheduleA/InvestmentIncomePYPct | 0 | 0.00000 |
| IRS990ScheduleA/PubliclySupportedOrg509a2Ind | 0 | X |
| IRS990ScheduleA/PublicSupportCY509Pct | 0 | 0.99880 |
| IRS990ScheduleA/PublicSupportPY509Pct | 0 | 0.99990 |
| IRS990ScheduleA/PublicSupportTotal509Amt | 0 | 5128946 |
| IRS990ScheduleA/ThirtyThrPctSuprtTestsCY509Ind | 0 | X |
| IRS990ScheduleA/Total509Grp/CurrentTaxYearAmt | 0 | 1104287 |
| IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus1YearAmt | 0 | 2010431 |
| IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus2YearsAmt | 0 | 716187 |
| IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus3YearsAmt | 0 | 668735 |
| IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus4YearsAmt | 0 | 629306 |
| IRS990ScheduleA/Total509Grp/TotalAmt | 0 | 5128946 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearAmt | 0 | 1110147 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus1YearAmt | 0 | 2010548 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus2YearsAmt | 0 | 716292 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus3YearsAmt | 0 | 668839 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus4YearsAmt | 0 | 629376 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/TotalAmt | 0 | 5135202 |
| 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 | 827296 |
| IRS990ScheduleD/NetUnrealizedGainsInvstAmt | 0 | 81 |
| IRS990ScheduleD/OtherLiabilitiesOrgGrp/Amt | 0 | 9945 |
| IRS990ScheduleD/OtherLiabilitiesOrgGrp/Desc | 0 | ACCRUED INTEREST |
| IRS990ScheduleD/RevenueNotReportedAmt | 0 | 81 |
| IRS990ScheduleD/RevenueSubtotalAmt | 0 | 1109263 |
| IRS990ScheduleD/TotalExpensesPerForm990Amt | 0 | 827296 |
| IRS990ScheduleD/TotalLiabilityAmt | 0 | 9945 |
| IRS990ScheduleD/TotalRevenuePerForm990Amt | 0 | 1109263 |
| IRS990ScheduleD/TotalRevEtcAuditedFinclStmtAmt | 0 | 1109344 |
| IRS990ScheduleD/TotExpnsEtcAuditedFinclStmtAmt | 0 | 827296 |
| IRS990ScheduleF/BoycottCountriesInd | 0 | false |
| IRS990ScheduleF/ForeignCorpOwnershipInd | 0 | false |
| IRS990ScheduleF/ForeignPartnershipInd | 0 | false |
| IRS990ScheduleF/GrantsToOrgOutsideUSGrp/CashGrantAmt | 0 | 40000 |
| 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 | 30032 |
| IRS990ScheduleI/RecipientTable/CashGrantAmt | 1 | 20000 |
| IRS990ScheduleI/RecipientTable/PurposeOfGrantTxt | 0 | REGISTRY SUPPORT |
| IRS990ScheduleI/RecipientTable/PurposeOfGrantTxt | 1 | SABA AWARD |
| IRS990ScheduleI/RecipientTable/RecipientBusinessName/BusinessNameLine1Txt | 0 | VANDERBILT UNIVERSITY MEDICAL CENTE |
| IRS990ScheduleI/RecipientTable/RecipientBusinessName/BusinessNameLine1Txt | 1 | UNIVERSITY OF MICHIGAN |
| IRS990ScheduleI/RecipientTable/USAddress/AddressLine1Txt | 0 | PO BOX 121236 |
| IRS990ScheduleI/RecipientTable/USAddress/AddressLine1Txt | 1 | 306 S STATE ST |
| IRS990ScheduleI/RecipientTable/USAddress/CityNm | 0 | DALLAS |
| IRS990ScheduleI/RecipientTable/USAddress/CityNm | 1 | ANN ARBOR |
| IRS990ScheduleI/RecipientTable/USAddress/StateAbbreviationCd | 0 | TX |
| IRS990ScheduleI/RecipientTable/USAddress/StateAbbreviationCd | 1 | MI |
| IRS990ScheduleI/RecipientTable/USAddress/ZIPCd | 0 | 753121236 |
| IRS990ScheduleI/RecipientTable/USAddress/ZIPCd | 1 | 48104 |
| IRS990ScheduleJ/AnyNonFixedPaymentsInd | 0 | false |
| IRS990ScheduleJ/CompBasedOnRevenueOfFlngOrgInd | 0 | false |
| IRS990ScheduleJ/CompBsdNetEarnsFlngOrgInd | 0 | false |
| IRS990ScheduleJ/CompBsdNetEarnsRltdOrgsInd | 0 | false |
| IRS990ScheduleJ/CompBsdOnRevRelatedOrgsInd | 0 | false |
| IRS990ScheduleJ/EquityBasedCompArrngmInd | 0 | false |
| IRS990ScheduleJ/InitialContractExceptionInd | 0 | false |
| IRS990/ScheduleJRequiredInd | 0 | true |
| IRS990ScheduleJ/RltdOrgOfficerTrstKeyEmplGrp/BaseCompensationFilingOrgAmt | 0 | 130000 |
| IRS990ScheduleJ/RltdOrgOfficerTrstKeyEmplGrp/BonusFilingOrganizationAmount | 0 | 25000 |
| IRS990ScheduleJ/RltdOrgOfficerTrstKeyEmplGrp/PersonNm | 0 | MICHELE MANION |
| IRS990ScheduleJ/RltdOrgOfficerTrstKeyEmplGrp/TitleTxt | 0 | EXEC DIR, PRESIDENT |
| IRS990ScheduleJ/RltdOrgOfficerTrstKeyEmplGrp/TotalCompensationFilingOrgAmt | 0 | 155000 |
| IRS990ScheduleJ/SeverancePaymentInd | 0 | false |
| IRS990ScheduleJ/SupplementalNonqualRtrPlanInd | 0 | false |
| IRS990/ScheduleORequiredInd | 0 | false |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 0 | 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. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 1 | 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 | 2 | 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 | 3 | 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 | 4 | NO DOCUMENTS AVAILABLE TO THE PUBLIC |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 0 | FORM 990, PAGE 2, PART III, LINE 4D |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 1 | FORM 990, PAGE 6, PART VI, LINE 9 |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 2 | FORM 990, PAGE 6, PART VI, LINE 11B |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 3 | FORM 990, PAGE 6, PART VI, LINE 12C |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 4 | 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 | 3186526 |
| IRS990/TotalAssetsEOYAmt | 0 | 3346050 |
| IRS990/TotalAssetsGrp/BOYAmt | 0 | 3186526 |
| IRS990/TotalAssetsGrp/EOYAmt | 0 | 3346050 |
| IRS990/TotalCompGreaterThan150KInd | 0 | true |
| IRS990/TotalContributionsAmt | 0 | 1094275 |
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Displayed year
2022 • Form 990Detailed filing. Detailed filing data is available for this year.