SPASTIC PARAPLEGIA FOUNDATION INC: Form 990, tax year 2023

View the entire original 990 at ProPublica ↗

Organization
SPASTIC PARAPLEGIA FOUNDATION INC (EIN 04-3594491)
Tax period
2023-01-01 to 2023-12-31
Filed
2024-10-24
IRS object ID
202402989349302050
Schema version
2023v5.0
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)
Return2024-10-24T14:10:02-07:00ReturnTs
Tax Period End2023-12-31TaxPeriodEndDt
Return Type990ReturnTypeCd
Tax Period Begin2023-01-01TaxPeriodBeginDt

Filer Filer

FieldValueIRS element (for citing)
EIN043594491EIN

Business Name BusinessName

FieldValueIRS element (for citing)
Business Name Line1SPASTIC PARAPLEGIA FOUNDATION INCBusinessNameLine1Txt
FieldValueIRS element (for citing)
Business Name ControlSPASBusinessNameControlTxt
Phone8777734483PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line16952 Clayborne DriveAddressLine1Txt
CityO FallonCityNm
State AbbreviationMOStateAbbreviationCd
ZIP63368ZIPCd

Business Officer BusinessOfficerGrp

FieldValueIRS element (for citing)
PersonLorri SteinerPersonNm
Person TitleAssistant TreasurerPersonTitleTxt
Phone6152600559PhoneNum
Signature2024-10-24SignatureDt
FieldValueIRS element (for citing)
IRS Responsible Prty Info CurrYes (1)IRSResponsiblePrtyInfoCurrInd
Tax2023TaxYr
Build TS2024-10-15 13:58:12ZBuildTS

Form 990 IRS990

FieldValueIRS element (for citing)
Address ChangeYes (X)AddressChangeInd

Doing Business As Name DoingBusinessAsName

FieldValueIRS element (for citing)
Business Name Line1Spastic Paraplegia FoundationBusinessNameLine1Txt
FieldValueIRS element (for citing)
Principal OfficerGreg PruittPrincipalOfficerNm

US Address USAddress

FieldValueIRS element (for citing)
Address Line11801 Byrd RoadAddressLine1Txt
CityMayfieldCityNm
State AbbreviationKYStateAbbreviationCd
ZIP420167801ZIPCd
FieldValueIRS element (for citing)
Gross Receipts$1,324,845GrossReceiptsAmt
Group Return For Affiliates0GroupReturnForAffiliatesInd
Organization501c3Yes (X)Organization501c3Ind
Website Addresswww.sp-foundation.orgWebsiteAddressTxt
Type Of Organization CorpYes (X)TypeOfOrganizationCorpInd
Formation2002FormationYr
Legal Domicile StateMALegalDomicileStateCd
Activity Or Mission1. To fund scientific research to discover the cures for hereditary spastic paraplegia and primary lateral sclerosis. 2. To provide information about the disorders to patients and their loved ones, and to the general public. 3. To provide emotional support to patients and their loved ones.ActivityOrMissionDesc
Voting Members Governing Body12VotingMembersGoverningBodyCnt
Voting Members Independent12VotingMembersIndependentCnt
Total Employee0TotalEmployeeCnt
Total Volunteers100TotalVolunteersCnt
Total Gross UBI$0TotalGrossUBIAmt
Net Unrelated Bus Txbl Incm$0NetUnrelatedBusTxblIncmAmt
PY Contributions Grants$1,281,413PYContributionsGrantsAmt
CY Contributions Grants$1,244,568CYContributionsGrantsAmt
PY Program Service Revenue$31,365PYProgramServiceRevenueAmt
CY Program Service Revenue$49,773CYProgramServiceRevenueAmt
PY Investment Income-$63,697PYInvestmentIncomeAmt
CY Investment Income$30,504CYInvestmentIncomeAmt
CY Other Revenue$0CYOtherRevenueAmt
PY Total Revenue$1,249,081PYTotalRevenueAmt
CY Total Revenue$1,324,845CYTotalRevenueAmt
PY Grants And Similar Paid$575,189PYGrantsAndSimilarPaidAmt
CY Grants And Similar Paid$1,930,438CYGrantsAndSimilarPaidAmt
CY Benefits Paid To Members$0CYBenefitsPaidToMembersAmt
CY Salaries Comp Emp Bnft Paid$0CYSalariesCompEmpBnftPaidAmt
CY Total Prof Fndrsng Expns$0CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense$4,384CYTotalFundraisingExpenseAmt
PY Other Expenses$173,211PYOtherExpensesAmt
CY Other Expenses-$1,824CYOtherExpensesAmt
PY Total Expenses$748,400PYTotalExpensesAmt
CY Total Expenses$1,928,614CYTotalExpensesAmt
PY Revenues Less Expenses$500,681PYRevenuesLessExpensesAmt
CY Revenues Less Expenses-$603,769CYRevenuesLessExpensesAmt
Total Assets BOY$2,855,492TotalAssetsBOYAmt
Total Assets EOY$3,308,442TotalAssetsEOYAmt
Total Liabilities BOY$1,331,690TotalLiabilitiesBOYAmt
Total Liabilities EOY$2,277,085TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY$1,523,802NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY$1,031,357NetAssetsOrFundBalancesEOYAmt
Mission1. To fund scientific research to discover the cures for hereditary spastic paraplegia and primary lateral sclerosis. 2. To provide information about the disorders to patients and their loved ones, and to the general public. 3. To provide emotional support to patients and their loved onesMissionDesc
Significant New Program Srvc0SignificantNewProgramSrvcInd
Significant Change0SignificantChangeInd
Expense$1,769,938ExpenseAmt
Grant$1,769,938GrantAmt
Revenue$0RevenueAmt
DescScientific research grants were awarded to academic researchers in universities both in the United States and internationally. A Scientific Advisory Board reviews and ranks all grant proposals received each year. The Foundation funds only the top ranked proposals. Grants are divided into up to five installments. The first installment is issued after a countersigned Research Grant Agreement is returned to the Foundation. Each of the remaining installments are issued after a satisfactory progress report or final report from the researcher. The amount above reflects the amount of grant payments made in 2023.Desc

Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp

FieldValueIRS element (for citing)
Expense$93,964ExpenseAmt
Grant$0GrantAmt
Revenue$30,651RevenueAmt
DescThe Foundation holds an annual conference each year for individuals suffering from the disease, their families, and caregivers. Researchers speak about primary lateral sclerosis and hereditary spastic paraplegia, including updates on the current state of their research. Attendees meet others affected by the disorders, typically the first time these individuals have met others with the same condition in person. Attendees pay a registration fee to attend.Desc

Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp

FieldValueIRS element (for citing)
Expense$24,117ExpenseAmt
Grant$0GrantAmt
Revenue$0RevenueAmt
DescThe Foundation prints and distributes "Synapse", a periodical about the disorders, activities of the Foundation, and articles about research.Desc

Prog Srvc Accom Acty Other ProgSrvcAccomActyOtherGrp

FieldValueIRS element (for citing)
Expense$8,233ExpenseAmt
Grant$0GrantAmt
Revenue$0RevenueAmt
DescEducational expenses to conduct and promote SPF talksDesc
FieldValueIRS element (for citing)
Total Other Prog Srvc Expense$8,233TotalOtherProgSrvcExpenseAmt
Total Other Prog Srvc Grant$0TotalOtherProgSrvcGrantAmt
Total Other Prog Srvc Revenue$0TotalOtherProgSrvcRevenueAmt
Total Program Service Expenses$1,896,252TotalProgramServiceExpensesAmt
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 Equipment0ReportLandBuildingEquipmentInd
Report Investments Other SecYes (1)ReportInvestmentsOtherSecInd
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 OrganizationsYes (1)GrantsToOrganizationsInd
Grants To Individuals0GrantsToIndividualsInd
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 ContriYes (1)DeductibleNonCashContriInd
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 Document0IRPDocumentCnt
IRP Document W2 G0IRPDocumentW2GCnt
Employee0EmployeeCnt
Unrelated Bus Incm Over Limit0UnrelatedBusIncmOverLimitInd
Foreign Financial Account0ForeignFinancialAccountInd
Prohibited Tax Shelter Trans0ProhibitedTaxShelterTransInd
Taxable Party Notification0TaxablePartyNotificationInd
Nondeductible Contributions0NondeductibleContributionsInd
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 Members12GoverningBodyVotingMembersCnt
Independent Voting Member12IndependentVotingMemberCnt
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 CommitteesYes (1)MinutesOfCommitteesInd
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 Policy0DocumentRetentionPolicyInd
Compensation Process CEO0CompensationProcessCEOInd
Compensation Process Other0CompensationProcessOtherInd
Investment In Joint Venture0InvestmentInJointVentureInd
States Where Copy Of Return Is FldALStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldARStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldCAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldCOStatesWhereCopyOfReturnIsFldCd
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States Where Copy Of Return Is FldILStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldKSStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldKYStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMDStatesWhereCopyOfReturnIsFldCd
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States Where Copy Of Return Is FldNYStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldOHStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldOKStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldORStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldPAStatesWhereCopyOfReturnIsFldCd
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States Where Copy Of Return Is FldWIStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldWVStatesWhereCopyOfReturnIsFldCd
Own WebsiteYes (X)OwnWebsiteInd

Books In Care Of Detail BooksInCareOfDetail

FieldValueIRS element (for citing)
PersonLorri SteinerPersonNm
Phone6152600559PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line16952 Clayborne DriveAddressLine1Txt
CityO FallonCityNm
State AbbreviationMOStateAbbreviationCd
ZIP63368ZIPCd
FieldValueIRS element (for citing)
No Listed Persons CompensatedYes (X)NoListedPersonsCompensatedInd

Form990 Part VII Section A Form990PartVIISectionAGrp (11 entries)

TitleTitleTxtAverage Hours Per WeekAverageHoursPerWeekRtAverage Hours Per Week Rltd OrgAverageHoursPerWeekRltdOrgRtIndividual Trustee Or DirectorIndividualTrusteeOrDirectorIndReportable Comp From OrgReportableCompFromOrgAmtReportable Comp From Rltd OrgReportableCompFromRltdOrgAmtOther CompensationOtherCompensationAmtOfficerOfficerInd
Corey Braastad
Director50Yes (X)$0$0$0
Hank Chiuppi
Secretary/Director300Yes (X)$0$0$0Yes (X)
John Cobb
Director10.000Yes (X)$0$0$0
Tina Croghan
Director10.000Yes (X)$0$0$0
Frank Davis
Director50Yes (X)$0$0$0
Dina Landphair
Director100Yes (X)$0$0$0
David Lewis
Treasurer50Yes (X)$0$0$0Yes (X)
Greg Pruitt
President/Director300Yes (X)$0$0$0Yes (X)
Jim Sheorn
Vice President/Director300Yes (X)$0$0$0Yes (X)
Carina Thurgood
Director50Yes (X)$0$0$0
Jackie Wellman
Director100Yes (X)$0$0$0
FieldValueIRS element (for citing)
Total Reportable Comp From Org$0TotalReportableCompFromOrgAmt
Tot Reportable Comp Rltd Org$0TotReportableCompRltdOrgAmt
Total Other Compensation$0TotalOtherCompensationAmt
Indiv Rcvd Greater Than100 K0IndivRcvdGreaterThan100KCnt
Former Ofcr Employees Listed0FormerOfcrEmployeesListedInd
Total Comp Greater Than150 K0TotalCompGreaterThan150KInd
Compensation From Other Srcs0CompensationFromOtherSrcsInd
Cntrct Rcvd Greater Than100 K0CntrctRcvdGreaterThan100KCnt
Federated Campaigns$2,100FederatedCampaignsAmt
Membership Dues$0MembershipDuesAmt
Fundraising$0FundraisingAmt
Related Organizations$0RelatedOrganizationsAmt
Government Grants$0GovernmentGrantsAmt
All Other Contributions$1,242,468AllOtherContributionsAmt
Noncash Contributions$219,534NoncashContributionsAmt
Total Contributions$1,244,568TotalContributionsAmt

Program Service Revenue ProgramServiceRevenueGrp

FieldValueIRS element (for citing)
DescAnnual ConferenceDesc
Business900099BusinessCd
Total Revenue Column$30,651TotalRevenueColumnAmt
Related Or Exempt Func Income$30,651RelatedOrExemptFuncIncomeAmt
Unrelated Business Revenue$0UnrelatedBusinessRevenueAmt
Exclusion$0ExclusionAmt

Total Oth Program Service Rev TotalOthProgramServiceRevGrp

FieldValueIRS element (for citing)
Total Revenue Column$19,122TotalRevenueColumnAmt
Related Or Exempt Func Income$19,122RelatedOrExemptFuncIncomeAmt
Unrelated Business Revenue$0UnrelatedBusinessRevenueAmt
Exclusion$0ExclusionAmt
FieldValueIRS element (for citing)
Total Program Service Revenue$49,773TotalProgramServiceRevenueAmt

Investment Income InvestmentIncomeGrp

FieldValueIRS element (for citing)
Total Revenue Column$30,504TotalRevenueColumnAmt
Related Or Exempt Func Income$30,504RelatedOrExemptFuncIncomeAmt
Unrelated Business Revenue$0UnrelatedBusinessRevenueAmt
Exclusion$0ExclusionAmt

Incm From Invest Bond Proceeds IncmFromInvestBondProceedsGrp

FieldValueIRS element (for citing)
Total Revenue Column$0TotalRevenueColumnAmt
Related Or Exempt Func Income$0RelatedOrExemptFuncIncomeAmt
Unrelated Business Revenue$0UnrelatedBusinessRevenueAmt
Exclusion$0ExclusionAmt

Royalties Revenue RoyaltiesRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$0TotalRevenueColumnAmt
Related Or Exempt Func Income$0RelatedOrExemptFuncIncomeAmt
Unrelated Business Revenue$0UnrelatedBusinessRevenueAmt
Exclusion$0ExclusionAmt

Rental Income Or Loss RentalIncomeOrLossGrp

FieldValueIRS element (for citing)
Real$0RealAmt
Personal$0PersonalAmt

Gain Or Loss GainOrLossGrp

FieldValueIRS element (for citing)
Securities$0SecuritiesAmt
Other$0OtherAmt
FieldValueIRS element (for citing)
Contri Rpt Fundraising Event$0ContriRptFundraisingEventAmt

Miscellaneous Revenue MiscellaneousRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$0TotalRevenueColumnAmt
Related Or Exempt Func Income$0RelatedOrExemptFuncIncomeAmt
Unrelated Business Revenue$0UnrelatedBusinessRevenueAmt
Exclusion$0ExclusionAmt
FieldValueIRS element (for citing)
Other Revenue Total$0OtherRevenueTotalAmt

Total Revenue TotalRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$1,324,845TotalRevenueColumnAmt
Related Or Exempt Func Income$80,277RelatedOrExemptFuncIncomeAmt
Unrelated Business Revenue$0UnrelatedBusinessRevenueAmt
Exclusion$0ExclusionAmt

Grants To Domestic Orgs GrantsToDomesticOrgsGrp

FieldValueIRS element (for citing)
Total$1,276,000TotalAmt
Program Services$1,276,000ProgramServicesAmt

Grants To Domestic Individuals GrantsToDomesticIndividualsGrp

FieldValueIRS element (for citing)
Total$0TotalAmt
Program Services$0ProgramServicesAmt

Foreign Grants ForeignGrantsGrp

FieldValueIRS element (for citing)
Total$654,438TotalAmt
Program Services$654,438ProgramServicesAmt

Benefits To Members BenefitsToMembersGrp

FieldValueIRS element (for citing)
Total$0TotalAmt
Program Services$0ProgramServicesAmt

Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp

FieldValueIRS element (for citing)
Total$0TotalAmt
Program Services$0ProgramServicesAmt
Management And General$0ManagementAndGeneralAmt
Fundraising$0FundraisingAmt

Comp Disqual Persons CompDisqualPersonsGrp

FieldValueIRS element (for citing)
Total$0TotalAmt
Program Services$0ProgramServicesAmt
Management And General$0ManagementAndGeneralAmt
Fundraising$0FundraisingAmt

Other Salaries And Wages OtherSalariesAndWagesGrp

FieldValueIRS element (for citing)
Total$0TotalAmt
Program Services$0ProgramServicesAmt
Management And General$0ManagementAndGeneralAmt
Fundraising$0FundraisingAmt

Pension Plan Contributions PensionPlanContributionsGrp

FieldValueIRS element (for citing)
Total$0TotalAmt
Program Services$0ProgramServicesAmt
Management And General$0ManagementAndGeneralAmt
Fundraising$0FundraisingAmt

Other Employee Benefits OtherEmployeeBenefitsGrp

FieldValueIRS element (for citing)
Total$0TotalAmt
Program Services$0ProgramServicesAmt
Management And General$0ManagementAndGeneralAmt
Fundraising$0FundraisingAmt

Payroll Taxes PayrollTaxesGrp

FieldValueIRS element (for citing)
Total$0TotalAmt
Program Services$0ProgramServicesAmt
Management And General$0ManagementAndGeneralAmt
Fundraising$0FundraisingAmt

Fees For Services Management FeesForServicesManagementGrp

FieldValueIRS element (for citing)
Total$0TotalAmt
Program Services$0ProgramServicesAmt
Management And General$0ManagementAndGeneralAmt
Fundraising$0FundraisingAmt

Fees For Services Legal FeesForServicesLegalGrp

FieldValueIRS element (for citing)
Total$0TotalAmt
Program Services$0ProgramServicesAmt
Management And General$0ManagementAndGeneralAmt
Fundraising$0FundraisingAmt

Fees For Services Accounting FeesForServicesAccountingGrp

FieldValueIRS element (for citing)
Total$0TotalAmt
Program Services$0ProgramServicesAmt
Management And General$0ManagementAndGeneralAmt
Fundraising$0FundraisingAmt

Fees For Services Lobbying FeesForServicesLobbyingGrp

FieldValueIRS element (for citing)
Total$0TotalAmt
Program Services$0ProgramServicesAmt
Management And General$0ManagementAndGeneralAmt
Fundraising$0FundraisingAmt

Fees For Services Prof Fundraising FeesForServicesProfFundraising

FieldValueIRS element (for citing)
Total$0TotalAmt
Fundraising$0FundraisingAmt

Fees For Srvc Invst Mgmnt Fees FeesForSrvcInvstMgmntFeesGrp

FieldValueIRS element (for citing)
Total$0TotalAmt
Program Services$0ProgramServicesAmt
Management And General$0ManagementAndGeneralAmt
Fundraising$0FundraisingAmt

Fees For Services Other FeesForServicesOtherGrp

FieldValueIRS element (for citing)
Total$22,455TotalAmt
Program Services$7,588ProgramServicesAmt
Management And General$13,572ManagementAndGeneralAmt
Fundraising$1,295FundraisingAmt

Advertising AdvertisingGrp

FieldValueIRS element (for citing)
Total$0TotalAmt
Program Services$0ProgramServicesAmt
Management And General$0ManagementAndGeneralAmt
Fundraising$0FundraisingAmt

Office Expenses OfficeExpensesGrp

FieldValueIRS element (for citing)
Total$31,135TotalAmt
Program Services$24,762ProgramServicesAmt
Management And General$3,284ManagementAndGeneralAmt
Fundraising$3,089FundraisingAmt

Information Technology InformationTechnologyGrp

FieldValueIRS element (for citing)
Total$8,961TotalAmt
Program Services$0ProgramServicesAmt
Management And General$8,961ManagementAndGeneralAmt
Fundraising$0FundraisingAmt

Royalties RoyaltiesGrp

FieldValueIRS element (for citing)
Total$0TotalAmt
Program Services$0ProgramServicesAmt
Management And General$0ManagementAndGeneralAmt
Fundraising$0FundraisingAmt

Occupancy OccupancyGrp

FieldValueIRS element (for citing)
Total$0TotalAmt
Program Services$0ProgramServicesAmt
Management And General$0ManagementAndGeneralAmt
Fundraising$0FundraisingAmt

Travel TravelGrp

FieldValueIRS element (for citing)
Total$0TotalAmt
Program Services$0ProgramServicesAmt
Management And General$0ManagementAndGeneralAmt
Fundraising$0FundraisingAmt

Pymt Travel Entrtnmnt Pub Ofcl PymtTravelEntrtnmntPubOfclGrp

FieldValueIRS element (for citing)
Total$0TotalAmt
Program Services$0ProgramServicesAmt
Management And General$0ManagementAndGeneralAmt
Fundraising$0FundraisingAmt

Conferences Meetings ConferencesMeetingsGrp

FieldValueIRS element (for citing)
Total$93,964TotalAmt
Program Services$93,964ProgramServicesAmt
Management And General$0ManagementAndGeneralAmt
Fundraising$0FundraisingAmt

Interest InterestGrp

FieldValueIRS element (for citing)
Total$0TotalAmt
Program Services$0ProgramServicesAmt
Management And General$0ManagementAndGeneralAmt
Fundraising$0FundraisingAmt

Payments To Affiliates PaymentsToAffiliatesGrp

FieldValueIRS element (for citing)
Total$0TotalAmt
Program Services$0ProgramServicesAmt
Management And General$0ManagementAndGeneralAmt
Fundraising$0FundraisingAmt

Depreciation Depletion DepreciationDepletionGrp

FieldValueIRS element (for citing)
Total$0TotalAmt
Program Services$0ProgramServicesAmt
Management And General$0ManagementAndGeneralAmt
Fundraising$0FundraisingAmt

Insurance InsuranceGrp

FieldValueIRS element (for citing)
Total$0TotalAmt
Program Services$0ProgramServicesAmt
Management And General$0ManagementAndGeneralAmt
Fundraising$0FundraisingAmt

Other Expenses OtherExpensesGrp (2 entries)

DescDescTotalTotalAmtProgram ServicesProgramServicesAmtManagement And GeneralManagementAndGeneralAmtFundraisingFundraisingAmt
adjustments to grant payable balances-$160,500-$160,500$0$0
license and permits$2,161$0$2,161$0

All Other Expenses AllOtherExpensesGrp

FieldValueIRS element (for citing)
Total$0TotalAmt
Program Services$0ProgramServicesAmt
Management And General$0ManagementAndGeneralAmt
Fundraising$0FundraisingAmt

Total Functional Expenses TotalFunctionalExpensesGrp

FieldValueIRS element (for citing)
Total$1,928,614TotalAmt
Program Services$1,896,252ProgramServicesAmt
Management And General$27,978ManagementAndGeneralAmt
Fundraising$4,384FundraisingAmt

Cash Non Interest Bearing CashNonInterestBearingGrp

FieldValueIRS element (for citing)
BOY$1,076,477BOYAmt
EOY$1,733,763EOYAmt

Savings And Temp Cash Invst SavingsAndTempCashInvstGrp

FieldValueIRS element (for citing)
BOY$0BOYAmt

Pledges And Grants Receivable PledgesAndGrantsReceivableGrp

FieldValueIRS element (for citing)
BOY$30,000BOYAmt
EOY$30,000EOYAmt

Accounts Receivable AccountsReceivableGrp

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

Receivables From Officers Etc ReceivablesFromOfficersEtcGrp

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

Rcvbl From Disqualified Prsn RcvblFromDisqualifiedPrsnGrp

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

Oth Notes Loans Receivable Net OthNotesLoansReceivableNetGrp

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

Inventories For Sale Or Use InventoriesForSaleOrUseGrp

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

Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp

FieldValueIRS element (for citing)
BOY$0BOYAmt
EOY$14,800EOYAmt

Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp

FieldValueIRS element (for citing)
BOY$0BOYAmt

Investments Pub Traded Sec InvestmentsPubTradedSecGrp

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

Investments Other Securities InvestmentsOtherSecuritiesGrp

FieldValueIRS element (for citing)
BOY$1,749,015BOYAmt
EOY$1,529,879EOYAmt

Investments Program Related InvestmentsProgramRelatedGrp

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

Intangible Assets IntangibleAssetsGrp

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

Other Assets Total OtherAssetsTotalGrp

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

Total Assets TotalAssetsGrp

FieldValueIRS element (for citing)
BOY$2,855,492BOYAmt
EOY$3,308,442EOYAmt

Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp

FieldValueIRS element (for citing)
BOY$9,000BOYAmt
EOY$9,000EOYAmt

Grants Payable GrantsPayableGrp

FieldValueIRS element (for citing)
BOY$1,322,690BOYAmt
EOY$2,268,085EOYAmt

Deferred Revenue DeferredRevenueGrp

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

Tax Exempt Bond Liabilities TaxExemptBondLiabilitiesGrp

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

Escrow Account Liability EscrowAccountLiabilityGrp

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

Loans From Officers Directors LoansFromOfficersDirectorsGrp

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

Mortg Notes Pybl Scrd Invst Prop MortgNotesPyblScrdInvstPropGrp

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

Unsecured Notes Loans Payable UnsecuredNotesLoansPayableGrp

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

Other Liabilities OtherLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$0BOYAmt

Total Liabilities TotalLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$1,331,690BOYAmt
EOY$2,277,085EOYAmt
FieldValueIRS element (for citing)
Organization Follows FASB117Yes (X)OrganizationFollowsFASB117Ind

No Donor Restriction Net Assets NoDonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$1,523,802BOYAmt
EOY$1,031,357EOYAmt

Donor Restriction Net Assets DonorRestrictionNetAssetsGrp

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

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$1,523,802BOYAmt
EOY$1,031,357EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$2,855,492BOYAmt
EOY$3,308,442EOYAmt
FieldValueIRS element (for citing)
Reconcilation Revenue Expnss-$603,769ReconcilationRevenueExpnssAmt
Net Unrlzd Gains Losses Invst$111,324NetUnrlzdGainsLossesInvstAmt
Donated Services And Use Fclts$0DonatedServicesAndUseFcltsAmt
Investment Expense$0InvestmentExpenseAmt
Prior Period Adjustments$0PriorPeriodAdjustmentsAmt
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)
Consolidated Basis Fincl StmtYes (X)ConsolidatedBasisFinclStmtInd
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$966,989CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$901,504CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$1,123,514CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$1,281,413CurrentTaxYearMinus1YearAmt
Current Tax Year$1,244,568CurrentTaxYearAmt
Total$5,517,988TotalAmt

Total Calendar Year170 TotalCalendarYear170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$966,989CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$901,504CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$1,123,514CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$1,281,413CurrentTaxYearMinus1YearAmt
Current Tax Year$1,244,568CurrentTaxYearAmt
Total$5,517,988TotalAmt
FieldValueIRS element (for citing)
Substantial Contributors Tot$1,310,712SubstantialContributorsTotAmt
Public Support Total170$4,207,276PublicSupportTotal170Amt

Gross Investment Income170 GrossInvestmentIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$20,022CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$27,553CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$29,866CurrentTaxYearMinus2YearsAmt
Current Tax Year$30,504CurrentTaxYearAmt
Total$107,945TotalAmt
FieldValueIRS element (for citing)
Total Support$5,625,933TotalSupportAmt
Gross Receipts Rltd Activities$81,138GrossReceiptsRltdActivitiesAmt
Public Support CY1700.74784PublicSupportCY170Pct
Public Support PY1700.8114PublicSupportPY170Pct
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

Financial Derivatives FinancialDerivativesGrp

FieldValueIRS element (for citing)
Book Value$0BookValueAmt

Closely Held Equity Interests CloselyHeldEquityInterestsGrp

FieldValueIRS element (for citing)
Book Value$0BookValueAmt

Other Securities OtherSecuritiesGrp

FieldValueIRS element (for citing)
DescCertificates of DepositDesc
Book Value$1,529,879BookValueAmt
Method ValuationFMethodValuationCd
FieldValueIRS element (for citing)
Total Book Value Securities$1,529,879TotalBookValueSecuritiesAmt
Total Rev Etc Audited Fincl Stmt$1,472,929TotalRevEtcAuditedFinclStmtAmt
Net Unrealized Gains Invst$111,324NetUnrealizedGainsInvstAmt
Donated Services And Use Fclts$36,760DonatedServicesAndUseFcltsAmt
Recoveries Prior Year Grants$0RecoveriesPriorYearGrantsAmt
Other Revenue$0OtherRevenueAmt
Revenue Not Reported$148,084RevenueNotReportedAmt
Revenue Subtotal$1,324,845RevenueSubtotalAmt
Investment Expenses Not Incld$0InvestmentExpensesNotIncldAmt
Other Revenues Not Included$0OtherRevenuesNotIncludedAmt
Revenue Not Reported Fincl Stmt$0RevenueNotReportedFinclStmtAmt
Total Revenue Per Form990$1,324,845TotalRevenuePerForm990Amt
Tot Expns Etc Audited Fincl Stmt$1,965,374TotExpnsEtcAuditedFinclStmtAmt
Donated Services Use Fclts$36,760DonatedServicesUseFcltsAmt
Prior Year Adjustments$0PriorYearAdjustmentsAmt
Losses Reported$0LossesReportedAmt
Other Expenses Included$0OtherExpensesIncludedAmt
Expenses Not Reported$36,760ExpensesNotReportedAmt
Expenses Subtotal$1,928,614ExpensesSubtotalAmt
Investment Expenses Not Incld2$0InvestmentExpensesNotIncld2Amt
Other Expenses Not Included$0OtherExpensesNotIncludedAmt
Expenses Not Rpt Fincl Stmt$0ExpensesNotRptFinclStmtAmt
Total Expenses Per Form990$1,928,614TotalExpensesPerForm990Amt

Schedule F IRS990ScheduleF

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

Account Activities Outside US AccountActivitiesOutsideUSGrp

FieldValueIRS element (for citing)
RegionEurope (including Iceland and Greenland)RegionTxt
Offices0OfficesCnt
Employee0EmployeeCnt
Type Of Activities ConductedGrantmakingTypeOfActivitiesConductedTxt
Specific Services ProvidedGrants were awarded to fund medical research towards the cure and therapies for the specific diseases of HSP and PLS.SpecificServicesProvidedTxt
Region Total Expenditures$654,438RegionTotalExpendituresAmt
FieldValueIRS element (for citing)
Total Office0TotalOfficeCnt
Total Employee0TotalEmployeeCnt
Total Spent$654,438TotalSpentAmt

Grants To Org Outside US GrantsToOrgOutsideUSGrp

FieldValueIRS element (for citing)
RegionEurope (including Iceland and Greenland)RegionTxt
Purpose Of GrantThe organization made 5 grants to institutions within Europe. Each of these grants was for the purpose of medical research seeking a cure and therapies for the specific rare diseases of HSP and PLS.PurposeOfGrantTxt
Cash Grant$654,438CashGrantAmt
Manner Of Cash Disbursementwire transferMannerOfCashDisbursementTxt
Non Cash Assistance$0NonCashAssistanceAmt
Valuation Method UsedUSDValuationMethodUsedDesc
FieldValueIRS element (for citing)
Total501c3 Org0Total501c3OrgCnt
Total Other Org5TotalOtherOrgCnt
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 ReferenceSchedule F, Part I, Line 2FormAndLineReferenceDesc
ExplanationThe Organization has a Scientific Advisory Board that reviews and ranks the proposals according to their alignment with the mission of SPF. The Board of Directors reviews this ranking and makes awards based upon the availability of funds from donations. Awards typically are paid in 5 installments. The first installment is made upon receipt of a countersigned research grant agreement. The second through fourth installment payments are made upon receipt of an interim progress report describing the research conducted under the award to date. The fifth installment payment is made upon receipt of a final report of clinical findings and a financial report detailing how the funds of the award were utilized.ExplanationTxt

Schedule I IRS990ScheduleI

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

Recipient Table RecipientTable (6 entries)

Address Line1USAddress/AddressLine1TxtCityUSAddress/CityNmState AbbreviationUSAddress/StateAbbreviationCdZIPUSAddress/ZIPCdRecipient EINRecipientEINCash GrantCashGrantAmtNon Cash AssistanceNonCashAssistanceAmtValuation Method UsedValuationMethodUsedDescNon Cash AssistanceNonCashAssistanceDescPurpose Of GrantPurposeOfGrantTxtAddress Line2USAddress/AddressLine2Txt
Columbia University
PO Box 29789New YorkNY10087135598093$76,000$0cashNAmedical research - additional support for the previously awarded "Establishing the natural history of PLS for future clinical trials: Analyzing disease progress in patients with PLS to develop historical controls which can be used for the first clinical trial in PLS in the near future". Led by Dr. Mitsumoto.
Drexel University
1505 15th StreetPhiladelphiaPA19102231352630$150,000$0bookmedical research led by Dr. Piermarini
Mayo Clinic
4500 San Pablo RoadJacksonvilleFL32224416011702$150,000$0bookmedical research let by Dr. Blitterswijk.
Drexel University
1505 15th StreetPhiladelphiaPA19102231352630$150,000$0bookmedical research led by Dr. Baas.
Northwestern University
633 Clark StreetEvanstonIL60208362167817$150,000$0bookmedical research led by Dr. Gautam.Suite G-547
Boston Children's Hospital
300 Longwood AvenueBostonMA02115042774441$600,000$0bookresearch collaboration - Centers of Excellence - led by Dr. Fahkari.
FieldValueIRS element (for citing)
Total501c3 Org0Total501c3OrgCnt
Total Other Org6TotalOtherOrgCnt

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferenceSchedule I, Part I, Line 2FormAndLineReferenceDesc
ExplanationThe Organization has a Scientific Advisory Board that reviews and ranks the proposals according to their alignment with the mission of SPF. The Board of Directors reviews this ranking and makes awards based upon the availability of funds from donations. Awards typically are paid in 5 installments. The first installment is made upon receipt of a countersigned research grant agreement. The second through fourth installment payments are made upon receipt of an interim progress report describing the research conducted under the award to date. The fifth installment payment is made upon receipt of a final report of clinical findings and a financial report detailing how the funds of the award were utilized.ExplanationTxt

Schedule M IRS990ScheduleM

Securities Miscellaneous SecuritiesMiscellaneousGrp

FieldValueIRS element (for citing)
Non Cash CheckboxYes (X)NonCashCheckboxInd
Contribution3ContributionCnt
Noncash Contributions Rpt F990$182,774NoncashContributionsRptF990Amt
Method Of Determining Revenuesfair value at saleMethodOfDeterminingRevenuesTxt
FieldValueIRS element (for citing)
Any Property That Must Be Held0AnyPropertyThatMustBeHeldInd
Review Process Unusual NC Gifts0ReviewProcessUnusualNCGiftsInd
Third Parties UsedYes (1)ThirdPartiesUsedInd

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferenceSchedule M, Part I, Line 32bFormAndLineReferenceDesc
ExplanationThe organization holds a brokerage account with Synovus Securities for the purpose of converting donated equity to cash through a sale of the publicly traded security (stock) that was donated.ExplanationTxt

Schedule O IRS990ScheduleO

Supplemental Information Detail SupplementalInformationDetail (3 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
Form 990, Part VI, Section B, Line 11bA draft was provided to all Board members via email prior to filing with the IRS. The Board was given time to ask questions of the SPF Co-Treasurers: David Lewis and Lorri Steiner.
Form 990, Part VI, Section B, Line 12cThe policy has always been written into the bylaws and articles of incorporation. The organization's Statement of Expectation for Board Members addresses conflicts of interests as well and is posted on the organization's website creating public oversight and accountability for existing Board Members as well as expectations for prospective Board Members.
Form 990, Part VI, Section C, Line 19The audited financial statements and the 990 are posted on the organization's website.

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