NATIONAL NIEMANN-PICK DISEASE FOUNDATION: Form 990, tax year 2024

View the entire original 990 at ProPublica ↗

Organization
NATIONAL NIEMANN-PICK DISEASE FOUNDATION (EIN 35-1844264)
Tax period
2024-01-01 to 2024-12-31
Filed
2025-06-16
IRS object ID
202501679349301305
Schema version
2024v5.1
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)
Return2025-06-16T11:29:00-05:00ReturnTs
Tax Period End2024-12-31TaxPeriodEndDt

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 Begin2024-01-01TaxPeriodBeginDt

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
ZIP53538ZIPCd

Business Officer BusinessOfficerGrp

FieldValueIRS element (for citing)
PersonELIZABETH HEINZEPersonNm
Person TitleCHAIRPersonTitleTxt
Phone8772873672PhoneNum
Signature2025-06-10SignatureDt
Discuss With Paid PreparerYes (1)DiscussWithPaidPreparerInd
FieldValueIRS element (for citing)
IRS Responsible Prty Info CurrYes (1)IRSResponsiblePrtyInfoCurrInd

Preparer Person PreparerPersonGrp

FieldValueIRS element (for citing)
Preparer PersonJASON STEPHENS CPAPreparerPersonNm
PTINP01263225PTIN
Phone6082744020PhoneNum
Preparation2025-06-04PreparationDt
FieldValueIRS element (for citing)
Tax2024TaxYr
Build TS2025-03-06 01:10:19ZBuildTS

Form 990 IRS990

FieldValueIRS element (for citing)
Principal OfficerSAIRA SULTANPrincipalOfficerNm

US Address USAddress

FieldValueIRS element (for citing)
Address Line1PO BOX 49AddressLine1Txt
CityFORT ATKINSONCityNm
State AbbreviationWIStateAbbreviationCd
ZIP53538ZIPCd
FieldValueIRS element (for citing)
Gross Receipts$676,224GrossReceiptsAmt
Group Return For Affiliates0GroupReturnForAffiliatesInd
Organization501c3Yes (X)Organization501c3Ind
Website AddressWWW.NNPDF.ORGWebsiteAddressTxt
Type Of Organization CorpYes (X)TypeOfOrganizationCorpInd
Formation1992FormationYr
Legal Domicile StateWILegalDomicileStateCd
Activity Or MissionTO SUPPORT AND EMPOWER PATIENTS AND FAMILIES AFFECTED BY NIEMANN-PICK DISEASE THROUGH EDUCATION, COLLABORATION, AND RESEARCH.ActivityOrMissionDesc
Voting Members Governing Body16VotingMembersGoverningBodyCnt
Voting Members Independent16VotingMembersIndependentCnt
Total Employee3TotalEmployeeCnt
Total Volunteers20TotalVolunteersCnt
Total Gross UBI$0TotalGrossUBIAmt
Net Unrelated Bus Txbl Incm$0NetUnrelatedBusTxblIncmAmt
PY Contributions Grants$552,816PYContributionsGrantsAmt
CY Contributions Grants$633,087CYContributionsGrantsAmt
PY Program Service Revenue$26,030PYProgramServiceRevenueAmt
CY Program Service Revenue$29,969CYProgramServiceRevenueAmt
PY Investment Income$4,934PYInvestmentIncomeAmt
CY Investment Income$6,468CYInvestmentIncomeAmt
PY Other Revenue$7,397PYOtherRevenueAmt
CY Other Revenue$6,700CYOtherRevenueAmt
PY Total Revenue$591,177PYTotalRevenueAmt
CY Total Revenue$676,224CYTotalRevenueAmt
PY Grants And Similar Paid$108,422PYGrantsAndSimilarPaidAmt
CY Grants And Similar Paid$44,068CYGrantsAndSimilarPaidAmt
PY Benefits Paid To Members$0PYBenefitsPaidToMembersAmt
CY Benefits Paid To Members$0CYBenefitsPaidToMembersAmt
PY Salaries Comp Emp Bnft Paid$252,076PYSalariesCompEmpBnftPaidAmt
CY Salaries Comp Emp Bnft Paid$204,465CYSalariesCompEmpBnftPaidAmt
PY Total Prof Fndrsng Expns$0PYTotalProfFndrsngExpnsAmt
CY Total Prof Fndrsng Expns$0CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense$36,027CYTotalFundraisingExpenseAmt
PY Other Expenses$436,174PYOtherExpensesAmt
CY Other Expenses$340,807CYOtherExpensesAmt
PY Total Expenses$796,672PYTotalExpensesAmt
CY Total Expenses$589,340CYTotalExpensesAmt
PY Revenues Less Expenses-$205,495PYRevenuesLessExpensesAmt
CY Revenues Less Expenses$86,884CYRevenuesLessExpensesAmt
Total Assets BOY$581,378TotalAssetsBOYAmt
Total Assets EOY$607,164TotalAssetsEOYAmt
Total Liabilities BOY$81,866TotalLiabilitiesBOYAmt
Total Liabilities EOY$20,768TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY$499,512NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY$586,396NetAssetsOrFundBalancesEOYAmt
MissionTHE NATIONAL NIEMANN-PICK DISEASE FOUNDATION, INC. (NNPDF) IS A NON-PROFIT, PATIENT ADVOCACY AND FAMILY SUPPORT ORGANIZATION 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$437,911ExpenseAmt
Grant$43,910GrantAmt
Revenue$29,969RevenueAmt
DescFAMILY SUPPORT - SUPPORT SERVICES TO FAMILIES WHO HAVE A FAMILY MEMBER DIAGNOSED WITH NIEMANN-PICK DISEASE AND PATIENT ADVOCACY EFFORTS. PATIENT ADVOCACY FOR ACCESS TO MEDICATIONS AND EXPERIMENTAL THERAPIES. 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 INCLUDING 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$5,793ExpenseAmt
Grant$158GrantAmt
Revenue$0RevenueAmt
DescRESEARCH SUPPORT - NNPDF SUPPORTS 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 NIEMANN-PICK DISEASE. PROVISION AND MONITORING OF SCIENTIFIC RESEARCH GRANTS AND FELLOWSHIPS TO RESEARCH SCIENTISTS.Desc
FieldValueIRS element (for citing)
Total Program Service Expenses$443,704TotalProgramServiceExpensesAmt
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 Activities0ForeignActivitiesInd
More Than5000 K To Org0MoreThan5000KToOrgInd
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 Document4IRPDocumentCnt
IRP Document W2 G0IRPDocumentW2GCnt
Employee3EmployeeCnt
Employment Tax Returns FiledYes (1)EmploymentTaxReturnsFiledInd
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 Members16GoverningBodyVotingMembersCnt
Independent Voting Member16IndependentVotingMemberCnt
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 PolicyYes (1)WhistleblowerPolicyInd
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
Own WebsiteYes (X)OwnWebsiteInd
Upon RequestYes (X)UponRequestInd

Books In Care Of Detail BooksInCareOfDetail

FieldValueIRS element (for citing)
PersonEBCFO LLCPersonNm
Phone8772873672PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line15550 TECH CENTER DR 203AddressLine1Txt
CityCOLORADO SPRINGSCityNm
State AbbreviationCOStateAbbreviationCd
ZIP80919ZIPCd

Form990 Part VII Section A Form990PartVIISectionAGrp (17 entries)

TitleTitleTxtAverage Hours Per WeekAverageHoursPerWeekRtOfficerOfficerIndReportable Comp From OrgReportableCompFromOrgAmtReportable Comp From Rltd OrgReportableCompFromRltdOrgAmtOther CompensationOtherCompensationAmtIndividual Trustee Or DirectorIndividualTrusteeOrDirectorInd
JOSLYN CROWE
EXECUTIVE DIRECTOR THRU SEPTEMBER40.00Yes (X)$105,504$0$3,335
ELIZABETH HEINZE
CHAIR6.00Yes (X)$0$0$0Yes (X)
BECKY MCGUIRE
VICE CHAIR1.00Yes (X)$0$0$0Yes (X)
MIKE SMITH
TREASURER2.00Yes (X)$0$0$0Yes (X)
TAYLOR SABKY
SECRETARY2.00Yes (X)$0$0$0Yes (X)
ANTHONY LEONI
DIRECTOR1.00$0$0$0Yes (X)
CARA GILMORE
DIRECTOR THRU JUNE1.00$0$0$0Yes (X)
CHRYSTELLE BOUGAULT
DIRECTOR1.00$0$0$0Yes (X)
DAWN STITES
DIRECTOR1.00$0$0$0Yes (X)
GAIL KOUJAIAN
DIRECTOR1.00$0$0$0Yes (X)
GARLAND ALVEY
DIRECTOR1.00$0$0$0Yes (X)
KARI LATO
DIRECTOR1.00$0$0$0Yes (X)
KELLY LEE
DIRECTOR1.00$0$0$0Yes (X)
MARY FRANCES HARMON
DIRECTOR1.00$0$0$0Yes (X)
MEGHANN FERGUSON
DIRECTOR1.00$0$0$0Yes (X)
PAUL MERRIGAN
DIRECTOR1.00$0$0$0Yes (X)
TRAVIS OBERMEYER
DIRECTOR1.00$0$0$0Yes (X)
FieldValueIRS element (for citing)
Total Reportable Comp From Org$105,504TotalReportableCompFromOrgAmt
Tot Reportable Comp Rltd Org$0TotReportableCompRltdOrgAmt
Total Other Compensation$3,335TotalOtherCompensationAmt
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$950FederatedCampaignsAmt
All Other Contributions$632,137AllOtherContributionsAmt
Total Contributions$633,087TotalContributionsAmt

Program Service Revenue ProgramServiceRevenueGrp

FieldValueIRS element (for citing)
DescCONFERENCE REGISTRATIODesc
Business561920BusinessCd
Total Revenue Column$29,969TotalRevenueColumnAmt
Related Or Exempt Func Income$29,969RelatedOrExemptFuncIncomeAmt
FieldValueIRS element (for citing)
Total Program Service Revenue$29,969TotalProgramServiceRevenueAmt

Investment Income InvestmentIncomeGrp

FieldValueIRS element (for citing)
Total Revenue Column$6,468TotalRevenueColumnAmt
Exclusion$6,468ExclusionAmt

Miscellaneous Revenue MiscellaneousRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$6,700TotalRevenueColumnAmt
Exclusion$6,700ExclusionAmt
FieldValueIRS element (for citing)
Other Revenue Total$6,700OtherRevenueTotalAmt

Total Revenue TotalRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$676,224TotalRevenueColumnAmt
Related Or Exempt Func Income$29,969RelatedOrExemptFuncIncomeAmt
Unrelated Business Revenue$0UnrelatedBusinessRevenueAmt
Exclusion$13,168ExclusionAmt

Grants To Domestic Individuals GrantsToDomesticIndividualsGrp

FieldValueIRS element (for citing)
Total$43,910TotalAmt
Program Services$43,910ProgramServicesAmt

Foreign Grants ForeignGrantsGrp

FieldValueIRS element (for citing)
Total$158TotalAmt
Program Services$158ProgramServicesAmt

Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp

FieldValueIRS element (for citing)
Total$94,067TotalAmt
Program Services$67,159ProgramServicesAmt
Management And General$18,098ManagementAndGeneralAmt
Fundraising$8,810FundraisingAmt

Other Salaries And Wages OtherSalariesAndWagesGrp

FieldValueIRS element (for citing)
Total$87,732TotalAmt
Program Services$63,461ProgramServicesAmt
Management And General$16,587ManagementAndGeneralAmt
Fundraising$7,684FundraisingAmt

Other Employee Benefits OtherEmployeeBenefitsGrp

FieldValueIRS element (for citing)
Total$8,100TotalAmt
Program Services$5,820ProgramServicesAmt
Management And General$1,545ManagementAndGeneralAmt
Fundraising$735FundraisingAmt

Payroll Taxes PayrollTaxesGrp

FieldValueIRS element (for citing)
Total$14,566TotalAmt
Program Services$10,466ProgramServicesAmt
Management And General$2,779ManagementAndGeneralAmt
Fundraising$1,321FundraisingAmt

Fees For Services Accounting FeesForServicesAccountingGrp

FieldValueIRS element (for citing)
Total$32,493TotalAmt
Management And General$32,493ManagementAndGeneralAmt

Fees For Services Other FeesForServicesOtherGrp

FieldValueIRS element (for citing)
Total$29,324TotalAmt
Program Services$7,222ProgramServicesAmt
Management And General$20,283ManagementAndGeneralAmt
Fundraising$1,819FundraisingAmt

Office Expenses OfficeExpensesGrp

FieldValueIRS element (for citing)
Total$15,705TotalAmt
Program Services$2,733ProgramServicesAmt
Management And General$1,455ManagementAndGeneralAmt
Fundraising$11,517FundraisingAmt

Information Technology InformationTechnologyGrp

FieldValueIRS element (for citing)
Total$12,615TotalAmt
Program Services$7,225ProgramServicesAmt
Management And General$1,927ManagementAndGeneralAmt
Fundraising$3,463FundraisingAmt

Occupancy OccupancyGrp

FieldValueIRS element (for citing)
Total$970TotalAmt
Program Services$696ProgramServicesAmt
Management And General$186ManagementAndGeneralAmt
Fundraising$88FundraisingAmt

Travel TravelGrp

FieldValueIRS element (for citing)
Total$30,594TotalAmt
Program Services$25,816ProgramServicesAmt
Management And General$4,725ManagementAndGeneralAmt
Fundraising$53FundraisingAmt

Conferences Meetings ConferencesMeetingsGrp

FieldValueIRS element (for citing)
Total$202,311TotalAmt
Program Services$200,532ProgramServicesAmt
Management And General$1,653ManagementAndGeneralAmt
Fundraising$126FundraisingAmt

Interest InterestGrp

FieldValueIRS element (for citing)
Total$50TotalAmt
Management And General$50ManagementAndGeneralAmt

Depreciation Depletion DepreciationDepletionGrp

FieldValueIRS element (for citing)
Total$2,337TotalAmt
Management And General$2,337ManagementAndGeneralAmt

Insurance InsuranceGrp

FieldValueIRS element (for citing)
Total$4,538TotalAmt
Program Services$3,258ProgramServicesAmt
Management And General$869ManagementAndGeneralAmt
Fundraising$411FundraisingAmt

Other Expenses OtherExpensesGrp

FieldValueIRS element (for citing)
DescMEMBERSHIP DUESDesc
Total$5,689TotalAmt
Program Services$5,000ProgramServicesAmt
Management And General$689ManagementAndGeneralAmt

All Other Expenses AllOtherExpensesGrp

FieldValueIRS element (for citing)
Total$4,181TotalAmt
Program Services$248ProgramServicesAmt
Management And General$3,933ManagementAndGeneralAmt

Total Functional Expenses TotalFunctionalExpensesGrp

FieldValueIRS element (for citing)
Total$589,340TotalAmt
Program Services$443,704ProgramServicesAmt
Management And General$109,609ManagementAndGeneralAmt
Fundraising$36,027FundraisingAmt

Cash Non Interest Bearing CashNonInterestBearingGrp

FieldValueIRS element (for citing)
BOY$468,386BOYAmt
EOY$270,741EOYAmt

Savings And Temp Cash Invst SavingsAndTempCashInvstGrp

FieldValueIRS element (for citing)
BOY$72,229BOYAmt
EOY$310,687EOYAmt

Pledges And Grants Receivable PledgesAndGrantsReceivableGrp

FieldValueIRS element (for citing)
BOY$12,563BOYAmt
EOY$21,606EOYAmt

Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp

FieldValueIRS element (for citing)
BOY$8,666BOYAmt
EOY$4,130EOYAmt
FieldValueIRS element (for citing)
Land Bldg Equip Cost Or Other Bss$17,848LandBldgEquipCostOrOtherBssAmt
Land Bldg Equip Accum Deprec$17,848LandBldgEquipAccumDeprecAmt

Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp

FieldValueIRS element (for citing)
BOY$2,337BOYAmt
EOY$0EOYAmt

Other Assets Total OtherAssetsTotalGrp

FieldValueIRS element (for citing)
BOY$17,197BOYAmt
EOY$0EOYAmt

Total Assets TotalAssetsGrp

FieldValueIRS element (for citing)
BOY$581,378BOYAmt
EOY$607,164EOYAmt

Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp

FieldValueIRS element (for citing)
BOY$78,047BOYAmt
EOY$20,768EOYAmt

Grants Payable GrantsPayableGrp

FieldValueIRS element (for citing)
BOY$3,819BOYAmt
EOY$0EOYAmt

Total Liabilities TotalLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$81,866BOYAmt
EOY$20,768EOYAmt
FieldValueIRS element (for citing)
Organization Follows FASB117Yes (X)OrganizationFollowsFASB117Ind

No Donor Restriction Net Assets NoDonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$317,015BOYAmt
EOY$453,273EOYAmt

Donor Restriction Net Assets DonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$182,497BOYAmt
EOY$133,123EOYAmt

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$499,512BOYAmt
EOY$586,396EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$581,378BOYAmt
EOY$607,164EOYAmt
FieldValueIRS element (for citing)
Reconcilation Revenue Expnss$86,884ReconcilationRevenueExpnssAmt
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$663,734CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$490,047CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$526,689CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$552,816CurrentTaxYearMinus1YearAmt
Current Tax Year$633,087CurrentTaxYearAmt
Total$2,866,373TotalAmt

Total Calendar Year170 TotalCalendarYear170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$663,734CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$490,047CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$526,689CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$552,816CurrentTaxYearMinus1YearAmt
Current Tax Year$633,087CurrentTaxYearAmt
Total$2,866,373TotalAmt
FieldValueIRS element (for citing)
Substantial Contributors Tot$1,331,041SubstantialContributorsTotAmt
Public Support Total170$1,535,332PublicSupportTotal170Amt

Gross Investment Income170 GrossInvestmentIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$1,511CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$328CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$1,551CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$4,934CurrentTaxYearMinus1YearAmt
Current Tax Year$6,468CurrentTaxYearAmt
Total$14,792TotalAmt
FieldValueIRS element (for citing)
Total Support$2,881,165TotalSupportAmt
Gross Receipts Rltd Activities$116,997GrossReceiptsRltdActivitiesAmt
Public Support CY1700.53290PublicSupportCY170Pct
Public Support PY1700.51340PublicSupportPY170Pct
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$9,435OtherCostOrOtherBasisAmt
Depreciation$9,435DepreciationAmt
Book Value$0BookValueAmt

Other Land Buildings OtherLandBuildingsGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$8,413OtherCostOrOtherBasisAmt
Depreciation$8,413DepreciationAmt
Book Value$0BookValueAmt
FieldValueIRS element (for citing)
Total Book Value Land Buildings$0TotalBookValueLandBuildingsAmt
Total Rev Etc Audited Fincl Stmt$680,149TotalRevEtcAuditedFinclStmtAmt
Donated Services And Use Fclts$3,925DonatedServicesAndUseFcltsAmt
Revenue Not Reported$3,925RevenueNotReportedAmt
Revenue Subtotal$676,224RevenueSubtotalAmt
Revenue Not Reported Fincl Stmt$0RevenueNotReportedFinclStmtAmt
Total Revenue Per Form990$676,224TotalRevenuePerForm990Amt
Tot Expns Etc Audited Fincl Stmt$593,265TotExpnsEtcAuditedFinclStmtAmt
Donated Services Use Fclts$3,925DonatedServicesUseFcltsAmt
Expenses Not Reported$3,925ExpensesNotReportedAmt
Expenses Subtotal$589,340ExpensesSubtotalAmt
Expenses Not Rpt Fincl Stmt$0ExpensesNotRptFinclStmtAmt
Total Expenses Per Form990$589,340TotalExpensesPerForm990Amt

Schedule I IRS990ScheduleI

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

Grants Other Asst To Indiv In US GrantsOtherAsstToIndivInUSGrp (5 entries)

Grant TypeGrantTypeTxtRecipientRecipientCntCash GrantCashGrantAmtNon Cash AssistanceNonCashAssistanceAmtValuation Method UsedValuationMethodUsedDescNon Cash AssistanceNonCashAssistanceDesc
FAMILY ASSISTANCE AND SUPPORT PROGRAM19$16,735
HOLIDAY GIFT PROGRAM110$12,962PURCHASE COST OF THE GIFT.TOYS PURCHASED FOR KIDS IMPACTED BY NPD THAT ARE GIVEN OUT DURING THE HOLIDAYS
FAMILY ADVISORY WORKING GROUP STIPENDS33$11,550
ADVOCACY STIPENDS FOR RARE DISEASE WEEK4$2,000
SCHOLARSHIPS2$663

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. NNPDF ALSO PROVIDES VARIOUS TYPES OF ASSISTANCE TO FAMILIES IN OUR PROGRAM. RECIPIENTS ARE SELECTED BY MANAGEMENT BASED ON CRITERIA ESTABLISHED BY THE BOARD FOR EACH TYPE OF ASSISTANCE.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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