NATIONAL NIEMANN-PICK DISEASE FOUNDATION: Form 990, tax year 2020

View the entire original 990 at ProPublica ↗

Organization
NATIONAL NIEMANN-PICK DISEASE FOUNDATION (EIN 35-1844264)
Tax period
2020-01-01 to 2020-12-31
Filed
2021-11-01
IRS object ID
202103059349301015
Schema version
2020v4.1
Source
Download XML · Original 990 at ProPublica

Every field in the e-filed return. Faint text is the IRS element name, for citing.

Return header ReturnHeader

FieldValueIRS element (for citing)
Return2021-11-01T10:59:44-05:00ReturnTs
Tax Period End2020-12-31TaxPeriodEndDt

Preparer Firm PreparerFirmGrp

FieldValueIRS element (for citing)
Preparer Firm EIN390974031PreparerFirmEIN

Preparer Firm Name PreparerFirmName

FieldValueIRS element (for citing)
Business Name Line1WEGNER CPAS LLPBusinessNameLine1Txt

Preparer US Address PreparerUSAddress

FieldValueIRS element (for citing)
Address Line12921 LANDMARK PL STE 300AddressLine1Txt
CityMADISONCityNm
State AbbreviationWIStateAbbreviationCd
ZIP537134236ZIPCd
FieldValueIRS element (for citing)
Return Type990ReturnTypeCd
Tax Period Begin2020-01-01TaxPeriodBeginDt

Filer Filer

FieldValueIRS element (for citing)
EIN351844264EIN

Business Name BusinessName

FieldValueIRS element (for citing)
Business Name Line1NATIONAL NIEMANN-PICK DISEASEBusinessNameLine1Txt
Business Name Line2FOUNDATION INCBusinessNameLine2Txt
FieldValueIRS element (for citing)
Business Name ControlNATIBusinessNameControlTxt
Phone8772873672PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line1PO BOX 49AddressLine1Txt
CityFORT ATKINSONCityNm
State AbbreviationWIStateAbbreviationCd
ZIP535380049ZIPCd

Business Officer BusinessOfficerGrp

FieldValueIRS element (for citing)
PersonJUSTIN HOPKINPersonNm
Person TitleBOARD CHAIRPersonTitleTxt
Phone8772873672PhoneNum
Signature2021-10-29SignatureDt
Discuss With Paid PreparerYes (1)DiscussWithPaidPreparerInd

Signing Officer SigningOfficerGrp

Person Full Name PersonFullName

FieldValueIRS element (for citing)
Person FirstJUSTINPersonFirstNm
Person LastHOPKINPersonLastNm
FieldValueIRS element (for citing)
SSN999009999SSN

Preparer Person PreparerPersonGrp

FieldValueIRS element (for citing)
Preparer PersonJASON STEPHENS CPAPreparerPersonNm
PTINP01263225PTIN
Phone6082744020PhoneNum

Additional Filer Information AdditionalFilerInformation

Trusted Customer TrustedCustomerGrp

FieldValueIRS element (for citing)
Trusted Customer2TrustedCustomerCd
Authentication Assurance LevelAAL1AuthenticationAssuranceLevelCd
Identity Assurance LevelIAL1IdentityAssuranceLevelCd
FieldValueIRS element (for citing)
Tax2020TaxYr
Build TS2022-09-23 18:48:47ZBuildTS

Form 990 IRS990

FieldValueIRS element (for citing)
Principal OfficerJOSLYN CROWEPrincipalOfficerNm

US Address USAddress

FieldValueIRS element (for citing)
Address Line1PO BOX 49AddressLine1Txt
CityFORT ATKINSONCityNm
State AbbreviationWIStateAbbreviationCd
ZIP535380049ZIPCd
FieldValueIRS element (for citing)
Gross Receipts$674,861GrossReceiptsAmt
Group Return For Affiliates0GroupReturnForAffiliatesInd
Organization501c3Yes (X)Organization501c3Ind
Website AddressWWW.NNPDF.ORGWebsiteAddressTxt
Type Of Organization CorpYes (X)TypeOfOrganizationCorpInd
Formation1992FormationYr
Legal Domicile StateWILegalDomicileStateCd
Activity Or MissionSUPPORTING NIEMANN-PICK AFFECTED PATIENTS AND FAMILIES WITH EDUCATION, COLLABORATION, AND RESEARCH.ActivityOrMissionDesc
Voting Members Governing Body10VotingMembersGoverningBodyCnt
Voting Members Independent10VotingMembersIndependentCnt
Total Employee3TotalEmployeeCnt
Total Volunteers50TotalVolunteersCnt
Total Gross UBI$0TotalGrossUBIAmt
Net Unrelated Bus Txbl Incm$0NetUnrelatedBusTxblIncmAmt
PY Contributions Grants$686,056PYContributionsGrantsAmt
CY Contributions Grants$663,734CYContributionsGrantsAmt
PY Program Service Revenue$50,905PYProgramServiceRevenueAmt
CY Program Service Revenue$7,710CYProgramServiceRevenueAmt
PY Investment Income$3,704PYInvestmentIncomeAmt
CY Investment Income$1,511CYInvestmentIncomeAmt
PY Other Revenue$25,734PYOtherRevenueAmt
CY Other Revenue$1,906CYOtherRevenueAmt
PY Total Revenue$766,399PYTotalRevenueAmt
CY Total Revenue$674,861CYTotalRevenueAmt
PY Grants And Similar Paid$31,118PYGrantsAndSimilarPaidAmt
CY Grants And Similar Paid$109,390CYGrantsAndSimilarPaidAmt
PY Benefits Paid To Members$0PYBenefitsPaidToMembersAmt
CY Benefits Paid To Members$0CYBenefitsPaidToMembersAmt
PY Salaries Comp Emp Bnft Paid$203,854PYSalariesCompEmpBnftPaidAmt
CY Salaries Comp Emp Bnft Paid$243,301CYSalariesCompEmpBnftPaidAmt
PY Total Prof Fndrsng Expns$0PYTotalProfFndrsngExpnsAmt
CY Total Prof Fndrsng Expns$0CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense$28,124CYTotalFundraisingExpenseAmt
PY Other Expenses$273,567PYOtherExpensesAmt
CY Other Expenses$322,309CYOtherExpensesAmt
PY Total Expenses$508,539PYTotalExpensesAmt
CY Total Expenses$675,000CYTotalExpensesAmt
PY Revenues Less Expenses$257,860PYRevenuesLessExpensesAmt
CY Revenues Less Expenses-$139CYRevenuesLessExpensesAmt
Total Assets BOY$794,988TotalAssetsBOYAmt
Total Assets EOY$799,194TotalAssetsEOYAmt
Total Liabilities BOY$20,502TotalLiabilitiesBOYAmt
Total Liabilities EOY$24,847TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY$774,486NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY$774,347NetAssetsOrFundBalancesEOYAmt
MissionWE ARE A NON-PROFIT GROUP DEDICATED TO SUPPORTING AND EMPOWERING PATIENTS AND FAMILIES AFFECTED BY NIEMANN-PICK DISEASE THROUGH EDUCATION, COLLABORATION, AND RESEARCH.MissionDesc
Significant New Program Srvc0SignificantNewProgramSrvcInd
Significant Change0SignificantChangeInd
Expense$426,214ExpenseAmt
Grant$27,390GrantAmt
Revenue$7,710RevenueAmt
DescFAMILY SUPPORT - SUPPORT SERVICES TO FAMILIES WHO HAVE A FAMILY MEMBER DIAGNOSED WITH NIEMANN-PICK DISEASE AND PATIENT ADVOCACY EFFORTS. EMOTIONAL SUPPORT TO INDIVIDUALS AND FAMILIES DEALING WITH ALL TYPES OF NIEMANN-PICK DISEASE, ASSISTANCE THROUGH CRISES, INFORMATION AND IDEAS ABOUT ISSUES SUCH AS DOCTORS, CLINICS, INSURANCE COMPANIES AND OTHER HEALTH AND HUMAN SERVICE PROGRAMS AND PRACTICAL SUGGESTIONS ABOUT DAY-TO-DAY CARE. COMMUNICATIONS INLCUDING MONTHLY NEWSLETTERS, E-NEWS, AND SOCIAL MEDIA NEWS UPDATES. THE ANNUAL NNPDF FAMILY SUPPORT AND MEDICAL CONFERENCE BRINGS TOGETHER FAMILIES, SCIENTISTS, AND MEDICAL PROFESSIONALS TO SHARE INFORMATION AND PROVIDE SUPPORT.Desc

Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp

FieldValueIRS element (for citing)
Expense$94,827ExpenseAmt
Grant$82,000GrantAmt
DescRESEACH SUPPORT - NNPDF SUPPORT OVER 450 DIAGNOSED FAMILIES AT ALL STAGES OF THEIR NIEMANN-PICK DISEASE JOURNEY. WE PROVIDE ACCURATE UP-TO-DATE INFORMATION ON THE LATEST ADVANCES IN MEDICINE AND SCIENCE RELATED TO NPD. PROVISION AND MONITORING OF SCIENTIFIC RESEARCH GRANTS AND FELLOWSHIPS TO RESEARCH SCIENTISTS ACROSS THE UNITED STATES.Desc
FieldValueIRS element (for citing)
Total Program Service Expenses$521,041TotalProgramServiceExpensesAmt
Described In Section501c3Yes (1)DescribedInSection501c3Ind
Schedule B RequiredYes (1)ScheduleBRequiredInd
Political Campaign Acty0PoliticalCampaignActyInd
Lobbying Activities0LobbyingActivitiesInd
Subject To Proxy Tax0SubjectToProxyTaxInd
Donor Advised Fund0DonorAdvisedFundInd
Conservation Easements0ConservationEasementsInd
Collections Of Art0CollectionsOfArtInd
Credit Counseling0CreditCounselingInd
Donor Rstr Or Quasi Endowments0DonorRstrOrQuasiEndowmentsInd
Report Land Building EquipmentYes (1)ReportLandBuildingEquipmentInd
Report Investments Other Sec0ReportInvestmentsOtherSecInd
Report Program Related Invst0ReportProgramRelatedInvstInd
Report Other Assets0ReportOtherAssetsInd
Report Other Liabilities0ReportOtherLiabilitiesInd
Include FIN48 Footnote0IncludeFIN48FootnoteInd
Independent Audit Fincl StmtYes (1)IndependentAuditFinclStmtInd
Consolidated Audit Fincl Stmt0ConsolidatedAuditFinclStmtInd
School Operating0SchoolOperatingInd
Foreign Office0ForeignOfficeInd
Foreign ActivitiesYes (1)ForeignActivitiesInd
More Than5000 K To OrgYes (1)MoreThan5000KToOrgInd
More Than5000 K To Individuals0MoreThan5000KToIndividualsInd
Professional Fundraising0ProfessionalFundraisingInd
Fundraising Activities0FundraisingActivitiesInd
Gaming Activities0GamingActivitiesInd
Operate Hospital0OperateHospitalInd
Grants To Organizations0GrantsToOrganizationsInd
Grants To IndividualsYes (1)GrantsToIndividualsInd
Schedule J Required0ScheduleJRequiredInd
Tax Exempt Bonds0TaxExemptBondsInd
Engaged In Excess Benefit Trans0EngagedInExcessBenefitTransInd
PY Excess Benefit Trans0PYExcessBenefitTransInd
Loan Outstanding0LoanOutstandingInd
Grant To Related Person0GrantToRelatedPersonInd
Business Rln With Org Mem0BusinessRlnWithOrgMemInd
Business Rln With Fam Mem0BusinessRlnWithFamMemInd
Business Rln With35 Ctrl Ent0BusinessRlnWith35CtrlEntInd
Deductible Non Cash Contri0DeductibleNonCashContriInd
Deductible Art Contribution0DeductibleArtContributionInd
Terminate Operations0TerminateOperationsInd
Partial Liquidation0PartialLiquidationInd
Disregarded Entity0DisregardedEntityInd
Related Entity0RelatedEntityInd
Related Organization Ctrl Ent0RelatedOrganizationCtrlEntInd
Trnsfr Exmpt Non Chrtbl Rltd Org0TrnsfrExmptNonChrtblRltdOrgInd
Activities Conducted Prtshp0ActivitiesConductedPrtshpInd
Schedule O RequiredYes (1)ScheduleORequiredInd
IRP Document8IRPDocumentCnt
IRP Document W2 G0IRPDocumentW2GCnt
Employee3EmployeeCnt
Employment Tax Returns Filed0EmploymentTaxReturnsFiledInd
Unrelated Bus Incm Over Limit0UnrelatedBusIncmOverLimitInd
Foreign Financial Account0ForeignFinancialAccountInd
Prohibited Tax Shelter Trans0ProhibitedTaxShelterTransInd
Taxable Party Notification0TaxablePartyNotificationInd
Nondeductible Contributions0NondeductibleContributionsInd
Quid Pro Quo Contributions0QuidProQuoContributionsInd
Form8282 Property Disposed Of0Form8282PropertyDisposedOfInd
Rcv Fnds To Pay Prsnl Bnft Cntrct0RcvFndsToPayPrsnlBnftCntrctInd
Pay Premiums Prsnl Bnft Cntrct0PayPremiumsPrsnlBnftCntrctInd
Indoor Tanning Services0IndoorTanningServicesInd
Subj To Tax Rmnrtn Ex Prcht Pymt0SubjToTaxRmnrtnExPrchtPymtInd
Subject To Excs Tax Net Invst Inc0SubjectToExcsTaxNetInvstIncInd
Info In Schedule O Part VIYes (X)InfoInScheduleOPartVIInd
Governing Body Voting Members10GoverningBodyVotingMembersCnt
Independent Voting Member10IndependentVotingMemberCnt
Family Or Business Rln0FamilyOrBusinessRlnInd
Delegation Of Mgmt Duties0DelegationOfMgmtDutiesInd
Change To Org Documents0ChangeToOrgDocumentsInd
Material Diversion Or Misuse0MaterialDiversionOrMisuseInd
Members Or Stockholders0MembersOrStockholdersInd
Election Of Board Members0ElectionOfBoardMembersInd
Decisions Subject To Approva0DecisionsSubjectToApprovaInd
Minutes Of Governing BodyYes (1)MinutesOfGoverningBodyInd
Minutes Of Committees0MinutesOfCommitteesInd
Officer Mailing Address0OfficerMailingAddressInd
Local Chapters0LocalChaptersInd
Form990 Provided To Gvrn BodyYes (1)Form990ProvidedToGvrnBodyInd
Conflict Of Interest PolicyYes (1)ConflictOfInterestPolicyInd
Annual Disclosure Covered PrsnYes (1)AnnualDisclosureCoveredPrsnInd
Regular Monitoring EnfrcYes (1)RegularMonitoringEnfrcInd
Whistleblower Policy0WhistleblowerPolicyInd
Document Retention PolicyYes (1)DocumentRetentionPolicyInd
Compensation Process CEOYes (1)CompensationProcessCEOInd
Compensation Process Other0CompensationProcessOtherInd
Investment In Joint Venture0InvestmentInJointVentureInd
States Where Copy Of Return Is FldWIStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMDStatesWhereCopyOfReturnIsFldCd
Upon RequestYes (X)UponRequestInd

Books In Care Of Detail BooksInCareOfDetail

FieldValueIRS element (for citing)
PersonJOSLYN CROWEPersonNm
Phone8772873672PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line1401 MADISON AVE STE BAddressLine1Txt
CityFORT ATKINSONCityNm
State AbbreviationWIStateAbbreviationCd
ZIP53538ZIPCd

Form990 Part VII Section A Form990PartVIISectionAGrp (12 entries)

TitleTitleTxtAverage Hours Per WeekAverageHoursPerWeekRtIndividual Trustee Or DirectorIndividualTrusteeOrDirectorIndOfficerOfficerIndReportable Comp From OrgReportableCompFromOrgAmtReportable Comp From Rltd OrgReportableCompFromRltdOrgAmtOther CompensationOtherCompensationAmt
JUSTIN HOPKIN
CHAIR4.00Yes (X)Yes (X)$0$0$0
BECKY MCGUIRE
VICE CHAIR2.00Yes (X)Yes (X)$0$0$0
MISSY WARD
SECRETARY1.00Yes (X)Yes (X)$0$0$0
ANNE OCONNOR-SMITH
INTERIM TREASURER (THRU MAY)1.00Yes (X)Yes (X)$0$0$0
CHRYSTELLE BOUGAULT
DIRECTOR1.00Yes (X)$0$0$0
KARA AYIK
DIRECTOR1.00Yes (X)$0$0$0
MEGHANN FERGUSON
DIRECTOR1.00Yes (X)$0$0$0
LIZ HEINZE
DIRECTOR1.00Yes (X)$0$0$0
ANTHONY LEONI
DIRECTOR1.00Yes (X)$0$0$0
PAUL MERRIGAN
DIRECTOR1.00Yes (X)$0$0$0
MIKE SMITH
TREASURER (FROM JUNE)1.00Yes (X)Yes (X)$0$0$0
JOSLYN CROWE
EXECUTIVE DIRECTOR40.00Yes (X)$125,802$0$5,000
FieldValueIRS element (for citing)
Total Reportable Comp From Org$125,802TotalReportableCompFromOrgAmt
Tot Reportable Comp Rltd Org$0TotReportableCompRltdOrgAmt
Total Other Compensation$5,000TotalOtherCompensationAmt
Indiv Rcvd Greater Than100 K1IndivRcvdGreaterThan100KCnt
Former Ofcr Employees Listed0FormerOfcrEmployeesListedInd
Total Comp Greater Than150 K0TotalCompGreaterThan150KInd
Compensation From Other Srcs0CompensationFromOtherSrcsInd
Cntrct Rcvd Greater Than100 K0CntrctRcvdGreaterThan100KCnt
Federated Campaigns$360FederatedCampaignsAmt
Government Grants$37,200GovernmentGrantsAmt
All Other Contributions$626,174AllOtherContributionsAmt
Total Contributions$663,734TotalContributionsAmt

Program Service Revenue ProgramServiceRevenueGrp

FieldValueIRS element (for citing)
DescCONFERENCEDesc
Business561920BusinessCd
Total Revenue Column$7,710TotalRevenueColumnAmt
Related Or Exempt Func Income$7,710RelatedOrExemptFuncIncomeAmt
FieldValueIRS element (for citing)
Total Program Service Revenue$7,710TotalProgramServiceRevenueAmt

Investment Income InvestmentIncomeGrp

FieldValueIRS element (for citing)
Total Revenue Column$1,511TotalRevenueColumnAmt
Exclusion$1,511ExclusionAmt

Miscellaneous Revenue MiscellaneousRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$1,906TotalRevenueColumnAmt
Exclusion$1,906ExclusionAmt
FieldValueIRS element (for citing)
Other Revenue Total$1,906OtherRevenueTotalAmt

Total Revenue TotalRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$674,861TotalRevenueColumnAmt
Related Or Exempt Func Income$7,710RelatedOrExemptFuncIncomeAmt
Unrelated Business Revenue$0UnrelatedBusinessRevenueAmt
Exclusion$3,417ExclusionAmt

Grants To Domestic Orgs GrantsToDomesticOrgsGrp

FieldValueIRS element (for citing)
Total$2,000TotalAmt
Program Services$2,000ProgramServicesAmt

Grants To Domestic Individuals GrantsToDomesticIndividualsGrp

FieldValueIRS element (for citing)
Total$27,390TotalAmt
Program Services$27,390ProgramServicesAmt

Foreign Grants ForeignGrantsGrp

FieldValueIRS element (for citing)
Total$80,000TotalAmt
Program Services$80,000ProgramServicesAmt

Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp

FieldValueIRS element (for citing)
Total$130,801TotalAmt
Program Services$93,079ProgramServicesAmt
Management And General$30,615ManagementAndGeneralAmt
Fundraising$7,107FundraisingAmt

Other Salaries And Wages OtherSalariesAndWagesGrp

FieldValueIRS element (for citing)
Total$83,328TotalAmt
Program Services$59,296ProgramServicesAmt
Management And General$19,504ManagementAndGeneralAmt
Fundraising$4,528FundraisingAmt

Other Employee Benefits OtherEmployeeBenefitsGrp

FieldValueIRS element (for citing)
Total$13,081TotalAmt
Program Services$9,308ProgramServicesAmt
Management And General$3,062ManagementAndGeneralAmt
Fundraising$711FundraisingAmt

Payroll Taxes PayrollTaxesGrp

FieldValueIRS element (for citing)
Total$16,091TotalAmt
Program Services$11,451ProgramServicesAmt
Management And General$3,766ManagementAndGeneralAmt
Fundraising$874FundraisingAmt

Fees For Services Management FeesForServicesManagementGrp

FieldValueIRS element (for citing)
Total$173,478TotalAmt
Program Services$143,623ProgramServicesAmt
Management And General$24,161ManagementAndGeneralAmt
Fundraising$5,694FundraisingAmt

Fees For Services Accounting FeesForServicesAccountingGrp

FieldValueIRS element (for citing)
Total$26,943TotalAmt
Management And General$26,943ManagementAndGeneralAmt

Fees For Services Other FeesForServicesOtherGrp

FieldValueIRS element (for citing)
Total$11,590TotalAmt
Program Services$11,590ProgramServicesAmt

Advertising AdvertisingGrp

FieldValueIRS element (for citing)
Total$5,657TotalAmt
Management And General$5,634ManagementAndGeneralAmt
Fundraising$23FundraisingAmt

Office Expenses OfficeExpensesGrp

FieldValueIRS element (for citing)
Total$16,915TotalAmt
Program Services$7,213ProgramServicesAmt
Management And General$2,342ManagementAndGeneralAmt
Fundraising$7,360FundraisingAmt

Information Technology InformationTechnologyGrp

FieldValueIRS element (for citing)
Total$22,107TotalAmt
Program Services$17,552ProgramServicesAmt
Management And General$3,478ManagementAndGeneralAmt
Fundraising$1,077FundraisingAmt

Occupancy OccupancyGrp

FieldValueIRS element (for citing)
Total$6,500TotalAmt
Program Services$4,623ProgramServicesAmt
Management And General$1,524ManagementAndGeneralAmt
Fundraising$353FundraisingAmt

Travel TravelGrp

FieldValueIRS element (for citing)
Total$6,487TotalAmt
Program Services$6,051ProgramServicesAmt
Management And General$436ManagementAndGeneralAmt

Conferences Meetings ConferencesMeetingsGrp

FieldValueIRS element (for citing)
Total$43,486TotalAmt
Program Services$43,486ProgramServicesAmt

Insurance InsuranceGrp

FieldValueIRS element (for citing)
Total$4,551TotalAmt
Program Services$3,237ProgramServicesAmt
Management And General$1,067ManagementAndGeneralAmt
Fundraising$247FundraisingAmt

All Other Expenses AllOtherExpensesGrp

FieldValueIRS element (for citing)
Total$4,595TotalAmt
Program Services$1,142ProgramServicesAmt
Management And General$3,303ManagementAndGeneralAmt
Fundraising$150FundraisingAmt

Total Functional Expenses TotalFunctionalExpensesGrp

FieldValueIRS element (for citing)
Total$675,000TotalAmt
Program Services$521,041ProgramServicesAmt
Management And General$125,835ManagementAndGeneralAmt
Fundraising$28,124FundraisingAmt

Cash Non Interest Bearing CashNonInterestBearingGrp

FieldValueIRS element (for citing)
BOY$76,822BOYAmt
EOY$427,539EOYAmt

Savings And Temp Cash Invst SavingsAndTempCashInvstGrp

FieldValueIRS element (for citing)
BOY$392,881BOYAmt
EOY$200,290EOYAmt

Pledges And Grants Receivable PledgesAndGrantsReceivableGrp

FieldValueIRS element (for citing)
BOY$320,050BOYAmt
EOY$168,665EOYAmt

Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp

FieldValueIRS element (for citing)
BOY$5,235BOYAmt
EOY$900EOYAmt
FieldValueIRS element (for citing)
Land Bldg Equip Cost Or Other Bss$11,235LandBldgEquipCostOrOtherBssAmt
Land Bldg Equip Accum Deprec$9,435LandBldgEquipAccumDeprecAmt

Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp

FieldValueIRS element (for citing)
BOY$0BOYAmt
EOY$1,800EOYAmt

Total Assets TotalAssetsGrp

FieldValueIRS element (for citing)
BOY$794,988BOYAmt
EOY$799,194EOYAmt

Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp

FieldValueIRS element (for citing)
BOY$20,502BOYAmt
EOY$24,847EOYAmt

Total Liabilities TotalLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$20,502BOYAmt
EOY$24,847EOYAmt
FieldValueIRS element (for citing)
Organization Follows FASB117Yes (X)OrganizationFollowsFASB117Ind

No Donor Restriction Net Assets NoDonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$325,628BOYAmt
EOY$536,801EOYAmt

Donor Restriction Net Assets DonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$448,858BOYAmt
EOY$237,546EOYAmt

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$774,486BOYAmt
EOY$774,347EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$794,988BOYAmt
EOY$799,194EOYAmt
FieldValueIRS element (for citing)
Reconcilation Revenue Expnss-$139ReconcilationRevenueExpnssAmt
Other Changes In Net Assets$0OtherChangesInNetAssetsAmt
Method Of Accounting AccrualYes (X)MethodOfAccountingAccrualInd
Accountant Compile Or Review0AccountantCompileOrReviewInd
FS AuditedYes (1)FSAuditedInd

FS Audited Basis FSAuditedBasisGrp

FieldValueIRS element (for citing)
Separate Basis Fincl StmtYes (X)SeparateBasisFinclStmtInd
FieldValueIRS element (for citing)
Audit CommitteeYes (1)AuditCommitteeInd
Federal Grant Audit Required0FederalGrantAuditRequiredInd

Schedule A IRS990ScheduleA

FieldValueIRS element (for citing)
Public Organization170Yes (X)PublicOrganization170Ind

Gifts Grants Contri Rcvd170 GiftsGrantsContriRcvd170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$306,750CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$541,637CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$725,414CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$686,056CurrentTaxYearMinus1YearAmt
Current Tax Year$663,734CurrentTaxYearAmt
Total$2,923,591TotalAmt

Total Calendar Year170 TotalCalendarYear170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$306,750CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$541,637CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$725,414CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$686,056CurrentTaxYearMinus1YearAmt
Current Tax Year$663,734CurrentTaxYearAmt
Total$2,923,591TotalAmt
FieldValueIRS element (for citing)
Substantial Contributors Tot$564,960SubstantialContributorsTotAmt
Public Support Total170$2,358,631PublicSupportTotal170Amt

Gross Investment Income170 GrossInvestmentIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$2,211CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$2,011CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$1,648CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$3,704CurrentTaxYearMinus1YearAmt
Current Tax Year$1,511CurrentTaxYearAmt
Total$11,085TotalAmt

Other Income170 OtherIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus1 Year$25,734CurrentTaxYearMinus1YearAmt
Total$25,734TotalAmt
FieldValueIRS element (for citing)
Total Support$2,960,410TotalSupportAmt
Gross Receipts Rltd Activities$111,433GrossReceiptsRltdActivitiesAmt
Public Support CY1700.79670PublicSupportCY170Pct
Public Support PY1700.73390PublicSupportPY170Pct
Thirty Thr Pct Suprt Tests CY170Yes (X)ThirtyThrPctSuprtTestsCY170Ind

Schedule B IRS990ScheduleB

Contributor Information ContributorInformationGrp

FieldValueIRS element (for citing)
ContributorRESTRICTEDContributorNum

Contributor Business Name ContributorBusinessName

FieldValueIRS element (for citing)
Business Name Line1RESTRICTEDBusinessNameLine1

Contributor US Address ContributorUSAddress

FieldValueIRS element (for citing)
Address Line1RESTRICTEDAddressLine1
Address Line2RESTRICTEDAddressLine2
CityRESTRICTEDCity
StateRESTRICTEDState
ZIP CodeRESTRICTEDZIPCode
FieldValueIRS element (for citing)
Total ContributionsRESTRICTEDTotalContributionsAmt

Schedule D IRS990ScheduleD

Equipment EquipmentGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$11,235OtherCostOrOtherBasisAmt
Depreciation$9,435DepreciationAmt
Book Value$1,800BookValueAmt
FieldValueIRS element (for citing)
Total Book Value Land Buildings$1,800TotalBookValueLandBuildingsAmt
Total Rev Etc Audited Fincl Stmt$675,211TotalRevEtcAuditedFinclStmtAmt
Donated Services And Use Fclts$350DonatedServicesAndUseFcltsAmt
Revenue Not Reported$350RevenueNotReportedAmt
Revenue Subtotal$674,861RevenueSubtotalAmt
Revenue Not Reported Fincl Stmt$0RevenueNotReportedFinclStmtAmt
Total Revenue Per Form990$674,861TotalRevenuePerForm990Amt
Tot Expns Etc Audited Fincl Stmt$675,350TotExpnsEtcAuditedFinclStmtAmt
Donated Services Use Fclts$350DonatedServicesUseFcltsAmt
Expenses Not Reported$350ExpensesNotReportedAmt
Expenses Subtotal$675,000ExpensesSubtotalAmt
Expenses Not Rpt Fincl Stmt$0ExpensesNotRptFinclStmtAmt
Total Expenses Per Form990$675,000TotalExpensesPerForm990Amt

Schedule F IRS990ScheduleF

FieldValueIRS element (for citing)
Grant Records MaintainedYes (1)GrantRecordsMaintainedInd

Account Activities Outside US AccountActivitiesOutsideUSGrp (2 entries)

RegionRegionTxtOfficesOfficesCntEmployeeEmployeeCntType Of Activities ConductedTypeOfActivitiesConductedTxtSpecific Services ProvidedSpecificServicesProvidedTxtRegion Total ExpendituresRegionTotalExpendituresAmt
NORTH AMERICA00GRANTS TO RECIPIENTS LOCATED IN THE REGIONGRANTS$40,000
EUROPE (INCLUDING00GRANTS TO RECIPIENTS LOCATED IN THE REGIONGRANTS$40,000
FieldValueIRS element (for citing)
Subtotal Offices0SubtotalOfficesCnt
Subtotal Employees0SubtotalEmployeesCnt
Continuation Total Office0ContinuationTotalOfficeCnt
Continuation Total Employee0ContinuationTotalEmployeeCnt
Total Office0TotalOfficeCnt
Total Employee0TotalEmployeeCnt
Subtotal Spent$80,000SubtotalSpentAmt
Continuation Spent$0ContinuationSpentAmt
Total Spent$80,000TotalSpentAmt

Grants To Org Outside US GrantsToOrgOutsideUSGrp (2 entries)

RegionRegionTxtPurpose Of GrantPurposeOfGrantTxtCash GrantCashGrantAmt
NORTH AMERICARESEARCH FELLOWSHIP$40,000
EUROPE (INCLUDING ICELAND & GREENLAND)RESEARCH FELLOWSHIP$40,000
FieldValueIRS element (for citing)
Total501c3 Org1Total501c3OrgCnt
Total Other Org1TotalOtherOrgCnt
Transfer To Foreign Corp0TransferToForeignCorpInd
Interest In Foreign Trust0InterestInForeignTrustInd
Foreign Corp Ownership0ForeignCorpOwnershipInd
Passive Foreign Investmest Co0PassiveForeignInvestmestCoInd
Foreign Partnership0ForeignPartnershipInd
Boycott Countries0BoycottCountriesInd

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferencePART III ACCOUNTING METHOD:FormAndLineReferenceDesc

Schedule I IRS990ScheduleI

FieldValueIRS element (for citing)
Grant Records MaintainedYes (1)GrantRecordsMaintainedInd

Grants Other Asst To Indiv In US GrantsOtherAsstToIndivInUSGrp (4 entries)

Grant TypeGrantTypeTxtRecipientRecipientCntCash GrantCashGrantAmt
ADVOCACY STIPEND FOR RARE DISEASE WEEK4$2,000
FAMILY ADVISORY WORKING GROUP STIPEND37$12,950
EMERGENCY HARDSHIP PROGRAM11$9,968
HOLIDAY GIFT PROGRAM9$2,472

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferencePART I, LINE 2:FormAndLineReferenceDesc
ExplanationNNPDF GRANTEES ARE REQUIRED TO PROVIDE INTERIM REPORTING ON THEIR RESEARCH, PURSUANT TO THEIR GRANT AGREEMENTS. NNPDF REVIEWS REPORTING WITH THE ASSISTANCE OF PROFESSIONAL CONSULTANTS.ExplanationTxt

Schedule O IRS990ScheduleO

Supplemental Information Detail SupplementalInformationDetail (5 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
FORM 990, PART VI, SECTION A, LINE 8BTHE ORGANIZATION DOES NOT HAVE ANY COMMITTEES WITH AUTHORITY TO ACT ON BEHALF OF THE GOVERNING BODY.
FORM 990, PART VI, SECTION B, LINE 11BTHE PREPARED FORM 990 IS REVIEWED AND APPROVED BY THE MEMBERS OF THE GOVERNING BODY BEFORE THE RETURN IS FILED WITH THE IRS.
FORM 990, PART VI, SECTION B, LINE 12CANNUALLY ALL DIRECTORS AND OFFICERS COMPLETE AND SIGN A STATEMENT THAT PROVIDES INFORMATION REGARDING THEIR INTERESTS AND THOSE OF THEIR FAMILY MEMBERS THAT COULD GIVE RISE TO CONFLICTS. THE MEMBERS OF THE GOVERNING BODY MAKE DETERMINATIONS OF WHETHER A CONFLICT EXISTS AND REVIEW ACTUAL CONFLICTS. ANY PERSON WITH A CONFLICT IS PROHIBITED FROM PARTICIPATING IN THE GOVERNING BODY'S DELIBERATIONS AND DECISIONS IN THE TRANSACTION.
FORM 990, PART VI, SECTION B, LINE 15ATHE INDEPENDENT MEMBERS OF THE GOVERNING BODY ANNUALLY CONDUCT A PERFORMANCE REVIEW OF THE EXECUTIVE DIRECTOR AND DETERMINE THE EXECUTIVE DIRECTOR'S COMPENSATION USING DATA ON COMPENSATION PAID BY COMPARABLE ORGANIZATIONS FOR SIMILAR SERVICES. THE MEMBERS OF THE GOVERNING BODY APPROVE THE EXECUTIVE DIRECTOR'S COMPENSATION WITH AN OFFICIAL VOTE AND DISCUSSIONS AND RESULTS ARE DOCUMENTED IN THE MINUTES OF THE MEETINGS OF THE GOVERNING BODY.
FORM 990, PART VI, SECTION C, LINE 19THE ORGANIZATION MAKES ITS GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY, AND FINANCIAL STATEMENTS AVAILABLE TO THE PUBLIC UPON REQUEST.

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