FTD DISORDERS REGISTRY LLC: Form 990, tax year 2016
View the entire original 990 at ProPublica ↗
- Organization
- FTD DISORDERS REGISTRY LLC (EIN 47-3601782)
- Tax period
- 2016-01-01 to 2016-12-31
- Filed
- 2017-05-30
- IRS object ID
- 201721509349300037
- Schema version
- 2016v3.0
- 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
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return | 2017-05-30T09:41:12-07:00 | ReturnTs |
| Tax Period End | 2016-12-31 | TaxPeriodEndDt |
Preparer Firm PreparerFirmGrp
Preparer Firm Name PreparerFirmName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | Regalia & Associates CPAs | BusinessNameLine1Txt |
Preparer US Address PreparerUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 103 Town Country Dr Ste K | AddressLine1Txt |
| City | Danville | CityNm |
| State Abbreviation | CA | StateAbbreviationCd |
| ZIP | 94526 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return Type | 990 | ReturnTypeCd |
| Tax Period Begin | 2016-01-01 | TaxPeriodBeginDt |
Filer Filer
| Field | Value | IRS element (for citing) |
|---|---|---|
| EIN | 473601782 | EIN |
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | The FTD Disorders Registry LLC | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Control | FTDD | BusinessNameControlTxt |
| Phone | 4156261501 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 637 Carolina Street | AddressLine1Txt |
| City | San Francisco | CityNm |
| State Abbreviation | CA | StateAbbreviationCd |
| ZIP | 94107 | ZIPCd |
Business Officer BusinessOfficerGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | Rodney Pearlman | PersonNm |
| Person Title | Treasurer | PersonTitleTxt |
| Signature | 2017-05-30 | SignatureDt |
| Discuss With Paid Preparer | Yes (true) | DiscussWithPaidPreparerInd |
Preparer Person PreparerPersonGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Person | Douglas W Regalia | PreparerPersonNm |
| PTIN | P00186389 | PTIN |
| Phone | 9253140390 | PhoneNum |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Tax | 2016 | TaxYr |
| Build TS | 2021-01-29 14:40:06Z | BuildTS |
Form 990 IRS990
| Field | Value | IRS element (for citing) |
|---|---|---|
| Principal Officer | Rodney Pearlman | PrincipalOfficerNm |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 637 Carolina Street | AddressLine1Txt |
| City | San Francisco | CityNm |
| State Abbreviation | CA | StateAbbreviationCd |
| ZIP | 941072725 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Gross Receipts | $234,540 | GrossReceiptsAmt |
| Group Return For Affiliates | false | GroupReturnForAffiliatesInd |
| All Affiliates Included | false | AllAffiliatesIncludedInd |
| Organization501c3 | Yes (X) | Organization501c3Ind |
| Website Address | www.bluefieldproject.org | WebsiteAddressTxt |
| Type Of Organization Other | Yes (X) | TypeOfOrganizationOtherInd |
| Formation | 2015 | FormationYr |
| Legal Domicile State | DE | LegalDomicileStateCd |
| Activity Or Mission | The FTD Disorders Registry LLC pro- vides a patient registry for those afflicted with the devastating neurodegener- ative disease of Frontotemporal degeneration, for which currently, there is no cure. The Registry serves patients and advocacy groups seeking help & information. | ActivityOrMissionDesc |
| Voting Members Governing Body | 8 | VotingMembersGoverningBodyCnt |
| Voting Members Independent | 6 | VotingMembersIndependentCnt |
| Total Employee | 0 | TotalEmployeeCnt |
| Total Gross UBI | $0 | TotalGrossUBIAmt |
| PY Contributions Grants | $358,280 | PYContributionsGrantsAmt |
| CY Contributions Grants | $234,421 | CYContributionsGrantsAmt |
| CY Program Service Revenue | $0 | CYProgramServiceRevenueAmt |
| PY Investment Income | $45 | PYInvestmentIncomeAmt |
| CY Investment Income | $119 | CYInvestmentIncomeAmt |
| CY Other Revenue | $0 | CYOtherRevenueAmt |
| PY Total Revenue | $358,325 | PYTotalRevenueAmt |
| CY Total Revenue | $234,540 | CYTotalRevenueAmt |
| CY Grants And Similar Paid | $0 | CYGrantsAndSimilarPaidAmt |
| CY Benefits Paid To Members | $0 | CYBenefitsPaidToMembersAmt |
| CY Salaries Comp Emp Bnft Paid | $0 | CYSalariesCompEmpBnftPaidAmt |
| CY Total Prof Fndrsng Expns | $0 | CYTotalProfFndrsngExpnsAmt |
| CY Total Fundraising Expense | $0 | CYTotalFundraisingExpenseAmt |
| PY Other Expenses | $77,209 | PYOtherExpensesAmt |
| CY Other Expenses | $264,834 | CYOtherExpensesAmt |
| PY Total Expenses | $77,209 | PYTotalExpensesAmt |
| CY Total Expenses | $264,834 | CYTotalExpensesAmt |
| PY Revenues Less Expenses | $281,116 | PYRevenuesLessExpensesAmt |
| CY Revenues Less Expenses | -$30,294 | CYRevenuesLessExpensesAmt |
| Total Assets BOY | $472,062 | TotalAssetsBOYAmt |
| Total Assets EOY | $515,815 | TotalAssetsEOYAmt |
| Total Liabilities BOY | $15,946 | TotalLiabilitiesBOYAmt |
| Total Liabilities EOY | $14,993 | TotalLiabilitiesEOYAmt |
| Net Assets Or Fund Balances BOY | $456,116 | NetAssetsOrFundBalancesBOYAmt |
| Net Assets Or Fund Balances EOY | $500,822 | NetAssetsOrFundBalancesEOYAmt |
| Mission | The Registry also serves investigators conducting research, clinicians treating patients, epidemiologists analyzing disease data, and investigators seeking patients for new clinical trials and initiating natural history studies. | MissionDesc |
| Significant New Program Srvc | false | SignificantNewProgramSrvcInd |
| Significant Change | false | SignificantChangeInd |
| Expense | $223,312 | ExpenseAmt |
| Desc | Goals of the Registry are to:Provide a centralized registry effort across the frontotemporal disorders spectrum, making de-identified data available to a diversity of stakeholders to support health outcomes research and other studies of interest to patient advocacy groups, clinical and basic science researchers.Improve the understanding of disease genotype and phenotype; improve quality of care; and provide a better understanding of disease epidemiology.Provide a centralized resource that can facilitate clinical trial enrollment for FTD disorders and the utility of preventive strategies by providing high quality, aggregate data, and a means of alerting a base of volunteers to clinical trial and research study opportunities. | Desc |
Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Desc | Provide a mechanism for coordinating and querying registrant volunteers to inform on more patient-friendly clinical trial design and potentially regulatory and policy groups in aid of patient-focused drug development.Thrive as a dynamic resource that can adapt to the FTD (and related disorders) research landscape and needs of the lay community. | Desc |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Program Service Expenses | $223,312 | TotalProgramServiceExpensesAmt |
| Described In Section501c3 | Yes (true) | DescribedInSection501c3Ind |
| Schedule B Required | Yes (true) | ScheduleBRequiredInd |
| Political Campaign Acty | false | PoliticalCampaignActyInd |
| Lobbying Activities | false | LobbyingActivitiesInd |
| Subject To Proxy Tax | false | SubjectToProxyTaxInd |
| Donor Advised Fund | false | DonorAdvisedFundInd |
| Conservation Easements | false | ConservationEasementsInd |
| Collections Of Art | false | CollectionsOfArtInd |
| Credit Counseling | false | CreditCounselingInd |
| Temp Or Permanent Endowments | false | TempOrPermanentEndowmentsInd |
| Report Land Building Equipment | Yes (true) | ReportLandBuildingEquipmentInd |
| Report Investments Other Sec | false | ReportInvestmentsOtherSecInd |
| Report Program Related Invst | false | ReportProgramRelatedInvstInd |
| Report Other Assets | false | ReportOtherAssetsInd |
| Report Other Liabilities | false | ReportOtherLiabilitiesInd |
| Include FIN48 Footnote | Yes (true) | IncludeFIN48FootnoteInd |
| Independent Audit Fincl Stmt | Yes (true) | IndependentAuditFinclStmtInd |
| Consolidated Audit Fincl Stmt | false | ConsolidatedAuditFinclStmtInd |
| School Operating | false | SchoolOperatingInd |
| Foreign Office | false | ForeignOfficeInd |
| Foreign Activities | false | ForeignActivitiesInd |
| More Than5000 K To Org | false | MoreThan5000KToOrgInd |
| More Than5000 K To Individuals | false | MoreThan5000KToIndividualsInd |
| Professional Fundraising | false | ProfessionalFundraisingInd |
| Fundraising Activities | false | FundraisingActivitiesInd |
| Gaming Activities | false | GamingActivitiesInd |
| Operate Hospital | false | OperateHospitalInd |
| Grants To Organizations | false | GrantsToOrganizationsInd |
| Grants To Individuals | false | GrantsToIndividualsInd |
| Schedule J Required | false | ScheduleJRequiredInd |
| Tax Exempt Bonds | false | TaxExemptBondsInd |
| Invest Tax Exempt Bonds | false | InvestTaxExemptBondsInd |
| Escrow Account | false | EscrowAccountInd |
| On Behalf Of Issuer | false | OnBehalfOfIssuerInd |
| Engaged In Excess Benefit Trans | false | EngagedInExcessBenefitTransInd |
| PY Excess Benefit Trans | false | PYExcessBenefitTransInd |
| Loan Outstanding | false | LoanOutstandingInd |
| Grant To Related Person | false | GrantToRelatedPersonInd |
| Business Rln With Org Mem | false | BusinessRlnWithOrgMemInd |
| Business Rln With Fam Mem | false | BusinessRlnWithFamMemInd |
| Business Rln With Officer Ent | false | BusinessRlnWithOfficerEntInd |
| Deductible Non Cash Contri | false | DeductibleNonCashContriInd |
| Deductible Art Contribution | false | DeductibleArtContributionInd |
| Terminate Operations | false | TerminateOperationsInd |
| Partial Liquidation | false | PartialLiquidationInd |
| Disregarded Entity | false | DisregardedEntityInd |
| Related Entity | false | RelatedEntityInd |
| Related Organization Ctrl Ent | false | RelatedOrganizationCtrlEntInd |
| Transaction With Control Ent | false | TransactionWithControlEntInd |
| Trnsfr Exmpt Non Chrtbl Rltd Org | false | TrnsfrExmptNonChrtblRltdOrgInd |
| Activities Conducted Prtshp | false | ActivitiesConductedPrtshpInd |
| Schedule O Required | Yes (true) | ScheduleORequiredInd |
| IRP Document | 0 | IRPDocumentCnt |
| IRP Document W2 G | 0 | IRPDocumentW2GCnt |
| Backup Wthld Compliance | false | BackupWthldComplianceInd |
| Employee | 0 | EmployeeCnt |
| Employment Tax Returns Filed | false | EmploymentTaxReturnsFiledInd |
| Unrelated Bus Incm Over Limit | false | UnrelatedBusIncmOverLimitInd |
| Form990 T Filed | false | Form990TFiledInd |
| Foreign Financial Account | false | ForeignFinancialAccountInd |
| Prohibited Tax Shelter Trans | false | ProhibitedTaxShelterTransInd |
| Taxable Party Notification | false | TaxablePartyNotificationInd |
| Nondeductible Contributions | false | NondeductibleContributionsInd |
| Quid Pro Quo Contributions | false | QuidProQuoContributionsInd |
| Form8282 Property Disposed Of | false | Form8282PropertyDisposedOfInd |
| Form8282 Filed | 0 | Form8282FiledCnt |
| Rcv Fnds To Pay Prsnl Bnft Cntrct | false | RcvFndsToPayPrsnlBnftCntrctInd |
| Pay Premiums Prsnl Bnft Cntrct | false | PayPremiumsPrsnlBnftCntrctInd |
| Form8899 Filedind | false | Form8899Filedind |
| Form1098 C Filed | false | Form1098CFiledInd |
| DAF Excess Business Holdings | false | DAFExcessBusinessHoldingsInd |
| Taxable Distributions | false | TaxableDistributionsInd |
| Distribution To Donor | false | DistributionToDonorInd |
| Org Filed In Lieu Of Form1041 | false | OrgFiledInLieuOfForm1041Ind |
| Licensed More Than One State | false | LicensedMoreThanOneStateInd |
| Indoor Tanning Services | false | IndoorTanningServicesInd |
| Info In Schedule O Part VI | Yes (X) | InfoInScheduleOPartVIInd |
| Governing Body Voting Members | 8 | GoverningBodyVotingMembersCnt |
| Independent Voting Member | 6 | IndependentVotingMemberCnt |
| Family Or Business Rln | Yes (true) | FamilyOrBusinessRlnInd |
| Delegation Of Mgmt Duties | false | DelegationOfMgmtDutiesInd |
| Change To Org Documents | false | ChangeToOrgDocumentsInd |
| Material Diversion Or Misuse | false | MaterialDiversionOrMisuseInd |
| Members Or Stockholders | Yes (true) | MembersOrStockholdersInd |
| Election Of Board Members | Yes (true) | ElectionOfBoardMembersInd |
| Decisions Subject To Approva | Yes (true) | DecisionsSubjectToApprovaInd |
| Minutes Of Governing Body | Yes (true) | MinutesOfGoverningBodyInd |
| Minutes Of Committees | Yes (true) | MinutesOfCommitteesInd |
| Officer Mailing Address | false | OfficerMailingAddressInd |
| Local Chapters | false | LocalChaptersInd |
| Form990 Provided To Gvrn Body | Yes (true) | Form990ProvidedToGvrnBodyInd |
| Conflict Of Interest Policy | Yes (true) | ConflictOfInterestPolicyInd |
| Annual Disclosure Covered Prsn | Yes (true) | AnnualDisclosureCoveredPrsnInd |
| Regular Monitoring Enfrc | Yes (true) | RegularMonitoringEnfrcInd |
| Whistleblower Policy | Yes (true) | WhistleblowerPolicyInd |
| Document Retention Policy | Yes (true) | DocumentRetentionPolicyInd |
| Compensation Process CEO | Yes (true) | CompensationProcessCEOInd |
| Compensation Process Other | Yes (true) | CompensationProcessOtherInd |
| Investment In Joint Venture | false | InvestmentInJointVentureInd |
| States Where Copy Of Return Is Fld | CA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | DE | StatesWhereCopyOfReturnIsFldCd |
| Other Website | Yes (X) | OtherWebsiteInd |
| Upon Request | Yes (X) | UponRequestInd |
Books In Care Of Detail BooksInCareOfDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | Rodney Pearlman | PersonNm |
| Phone | 4156261501 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 637 Carolina Street | AddressLine1Txt |
| City | San Francisco | CityNm |
| State Abbreviation | CA | StateAbbreviationCd |
| ZIP | 941072725 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| No Listed Persons Compensated | Yes (X) | NoListedPersonsCompensatedInd |
Form990 Part VII Section A Form990PartVIISectionAGrp (4 entries)
| TitleTitleTxt | Average Hours Per WeekAverageHoursPerWeekRt | Average Hours Per Week Rltd OrgAverageHoursPerWeekRltdOrgRt | Individual Trustee Or DirectorIndividualTrusteeOrDirectorInd | OfficerOfficerInd | Reportable Comp From OrgReportableCompFromOrgAmt | Reportable Comp From Rltd OrgReportableCompFromRltdOrgAmt | Other CompensationOtherCompensationAmt |
|---|---|---|---|---|---|---|---|
| Emily Levy | |||||||
| President | 4.00 | 0.00 | Yes (X) | Yes (X) | $0 | $0 | $0 |
| Rodney Pearlman | |||||||
| Treasurer | 4.00 | 0.00 | Yes (X) | Yes (X) | $0 | $0 | $0 |
| Suzanne Markel-Fox | |||||||
| Director | 4.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |
| Patrick Brannelly | |||||||
| Director | 4.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Indiv Rcvd Greater Than100 K | 0 | IndivRcvdGreaterThan100KCnt |
| Former Ofcr Employees Listed | false | FormerOfcrEmployeesListedInd |
| Total Comp Greater Than150 K | false | TotalCompGreaterThan150KInd |
| Compensation From Other Srcs | false | CompensationFromOtherSrcsInd |
Contractor Compensation ContractorCompensationGrp
Contractor Name ContractorName
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | Association for Frontotemporal Degeneration | BusinessNameLine1Txt |
Contractor Address ContractorAddress
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 290 King of Prussia Road | AddressLine1Txt |
| City | Radnor | CityNm |
| State Abbreviation | PA | StateAbbreviationCd |
| ZIP | 19087 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Services | Consulting | ServicesDesc |
| Compensation | $139,844 | CompensationAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Cntrct Rcvd Greater Than100 K | 1 | CntrctRcvdGreaterThan100KCnt |
| All Other Contributions | $234,421 | AllOtherContributionsAmt |
| Noncash Contributions | $10,080 | NoncashContributionsAmt |
| Total Contributions | $234,421 | TotalContributionsAmt |
| Total Program Service Revenue | $0 | TotalProgramServiceRevenueAmt |
Investment Income InvestmentIncomeGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $119 | TotalRevenueColumnAmt |
| Exclusion | $119 | ExclusionAmt |
Incm From Invest Bond Proceeds IncmFromInvestBondProceedsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $0 | TotalRevenueColumnAmt |
Royalties Revenue RoyaltiesRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $0 | TotalRevenueColumnAmt |
Net Rental Income Or Loss NetRentalIncomeOrLossGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $0 | TotalRevenueColumnAmt |
Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $0 | TotalRevenueColumnAmt |
Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $0 | TotalRevenueColumnAmt |
Net Income From Gaming NetIncomeFromGamingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $0 | TotalRevenueColumnAmt |
Net Income Or Loss NetIncomeOrLossGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $0 | TotalRevenueColumnAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Revenue Total | $0 | OtherRevenueTotalAmt |
Total Revenue TotalRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $234,540 | TotalRevenueColumnAmt |
| Exclusion | $119 | ExclusionAmt |
Grants To Domestic Orgs GrantsToDomesticOrgsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Grants To Domestic Individuals GrantsToDomesticIndividualsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Foreign Grants ForeignGrantsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Benefits To Members BenefitsToMembersGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Comp Disqual Persons CompDisqualPersonsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Other Salaries And Wages OtherSalariesAndWagesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Pension Plan Contributions PensionPlanContributionsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Other Employee Benefits OtherEmployeeBenefitsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Payroll Taxes PayrollTaxesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Fees For Services Management FeesForServicesManagementGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Fees For Services Legal FeesForServicesLegalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Fees For Services Accounting FeesForServicesAccountingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $24,131 | TotalAmt |
| Management And General | $24,131 | ManagementAndGeneralAmt |
Fees For Services Lobbying FeesForServicesLobbyingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Fees For Services Prof Fundraising FeesForServicesProfFundraising
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Fees For Srvc Invst Mgmnt Fees FeesForSrvcInvstMgmntFeesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Fees For Services Other FeesForServicesOtherGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $10,366 | TotalAmt |
| Program Services | $10,366 | ProgramServicesAmt |
Advertising AdvertisingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $66,025 | TotalAmt |
| Program Services | $66,025 | ProgramServicesAmt |
Office Expenses OfficeExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $9,715 | TotalAmt |
| Program Services | $5,735 | ProgramServicesAmt |
| Management And General | $3,980 | ManagementAndGeneralAmt |
Information Technology InformationTechnologyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Royalties RoyaltiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Occupancy OccupancyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Travel TravelGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $6,110 | TotalAmt |
| Program Services | $6,110 | ProgramServicesAmt |
Pymt Travel Entrtnmnt Pub Ofcl PymtTravelEntrtnmntPubOfclGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Conferences Meetings ConferencesMeetingsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Interest InterestGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Payments To Affiliates PaymentsToAffiliatesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Depreciation Depletion DepreciationDepletionGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Insurance InsuranceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $3,069 | TotalAmt |
| Management And General | $3,069 | ManagementAndGeneralAmt |
Other Expenses OtherExpensesGrp (3 entries)
| DescDesc | TotalTotalAmt | Program ServicesProgramServicesAmt | Management And GeneralManagementAndGeneralAmt |
|---|---|---|---|
| FTD contracted expenses | $135,053 | $135,053 | |
| In kind expenses | $10,080 | $10,080 | |
| Taxes and fees | $285 | $23 | $262 |
All Other Expenses AllOtherExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Total Functional Expenses TotalFunctionalExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $264,834 | TotalAmt |
| Program Services | $223,312 | ProgramServicesAmt |
| Management And General | $41,522 | ManagementAndGeneralAmt |
| Fundraising | $0 | FundraisingAmt |
Cash Non Interest Bearing CashNonInterestBearingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $471,604 | BOYAmt |
| EOY | $329,637 | EOYAmt |
Savings And Temp Cash Invst SavingsAndTempCashInvstGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | $0 | EOYAmt |
Pledges And Grants Receivable PledgesAndGrantsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | $0 | EOYAmt |
Accounts Receivable AccountsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | $0 | EOYAmt |
Receivables From Officers Etc ReceivablesFromOfficersEtcGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | $0 | EOYAmt |
Rcvbl From Disqualified Prsn RcvblFromDisqualifiedPrsnGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | $0 | EOYAmt |
Oth Notes Loans Receivable Net OthNotesLoansReceivableNetGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | $0 | EOYAmt |
Inventories For Sale Or Use InventoriesForSaleOrUseGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | $0 | EOYAmt |
Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $458 | BOYAmt |
| EOY | $36,178 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Land Bldg Equip Cost Or Other Bss | $150,000 | LandBldgEquipCostOrOtherBssAmt |
Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | $150,000 | EOYAmt |
Investments Pub Traded Sec InvestmentsPubTradedSecGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | $0 | EOYAmt |
Investments Other Securities InvestmentsOtherSecuritiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | $0 | EOYAmt |
Investments Program Related InvestmentsProgramRelatedGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | $0 | EOYAmt |
Intangible Assets IntangibleAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | $0 | EOYAmt |
Other Assets Total OtherAssetsTotalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | $0 | EOYAmt |
Total Assets TotalAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $472,062 | BOYAmt |
| EOY | $515,815 | EOYAmt |
Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $15,946 | BOYAmt |
| EOY | $14,993 | EOYAmt |
Total Liabilities TotalLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $15,946 | BOYAmt |
| EOY | $14,993 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Organization Follows SFAS117 | Yes (X) | OrganizationFollowsSFAS117Ind |
Unrestricted Net Assets UnrestrictedNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $456,116 | BOYAmt |
| EOY | $500,822 | EOYAmt |
Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $456,116 | BOYAmt |
| EOY | $500,822 | EOYAmt |
Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $472,062 | BOYAmt |
| EOY | $515,815 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Info In Schedule O Part XI | Yes (X) | InfoInScheduleOPartXIInd |
| Reconcilation Revenue Expnss | -$30,294 | ReconcilationRevenueExpnssAmt |
| Other Changes In Net Assets | $75,000 | OtherChangesInNetAssetsAmt |
| Method Of Accounting Accrual | Yes (X) | MethodOfAccountingAccrualInd |
| Accountant Compile Or Review | false | AccountantCompileOrReviewInd |
| FS Audited | Yes (true) | FSAuditedInd |
FS Audited Basis FSAuditedBasisGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Separate Basis Fincl Stmt | Yes (X) | SeparateBasisFinclStmtInd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Audit Committee | Yes (true) | AuditCommitteeInd |
| Federal Grant Audit Required | false | FederalGrantAuditRequiredInd |
Schedule A IRS990ScheduleA
| Field | Value | IRS element (for citing) |
|---|---|---|
| Public Organization170 | Yes (X) | PublicOrganization170Ind |
Gifts Grants Contri Rcvd170 GiftsGrantsContriRcvd170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus1 Year | $350,000 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $224,341 | CurrentTaxYearAmt |
| Total | $574,341 | TotalAmt |
Tax Rev Levied Orgnztnl Bnft170 TaxRevLeviedOrgnztnlBnft170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Govt Furn Srvc Fclts Vl170 GovtFurnSrvcFcltsVl170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Total Calendar Year170 TotalCalendarYear170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus1 Year | $350,000 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $224,341 | CurrentTaxYearAmt |
| Total | $574,341 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Substantial Contributors Tot | $527,020 | SubstantialContributorsTotAmt |
| Public Support Total170 | $47,321 | PublicSupportTotal170Amt |
Gross Investment Income170 GrossInvestmentIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus1 Year | $45 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $119 | CurrentTaxYearAmt |
| Total | $164 | TotalAmt |
Unrelated Business Net Incm170 UnrelatedBusinessNetIncm170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Other Income170 OtherIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Support | $574,505 | TotalSupportAmt |
| First5 Years170 | Yes (X) | First5Years170Ind |
| Public Support CY170 | 0.00000 | PublicSupportCY170Pct |
Schedule B IRS990ScheduleB
Contributor Information ContributorInformationGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Contributor | RESTRICTED | ContributorNum |
Contributor Business Name ContributorBusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | RESTRICTED | BusinessNameLine1 |
Contributor US Address ContributorUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | RESTRICTED | AddressLine1 |
| Address Line2 | RESTRICTED | AddressLine2 |
| City | RESTRICTED | City |
| State | RESTRICTED | State |
| ZIP Code | RESTRICTED | ZIPCode |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Contributions | RESTRICTED | TotalContributionsAmt |
Schedule D IRS990ScheduleD
Other Land Buildings OtherLandBuildingsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | $150,000 | OtherCostOrOtherBasisAmt |
| Book Value | $150,000 | BookValueAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Land Buildings | $150,000 | TotalBookValueLandBuildingsAmt |
| Footnote Text | Yes (X) | FootnoteTextInd |
| Total Rev Etc Audited Fincl Stmt | $234,540 | TotalRevEtcAuditedFinclStmtAmt |
| Revenue Subtotal | $234,540 | RevenueSubtotalAmt |
| Total Revenue Per Form990 | $234,540 | TotalRevenuePerForm990Amt |
| Tot Expns Etc Audited Fincl Stmt | $264,834 | TotExpnsEtcAuditedFinclStmtAmt |
| Expenses Subtotal | $264,834 | ExpensesSubtotalAmt |
| Total Expenses Per Form990 | $264,834 | TotalExpensesPerForm990Amt |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | Part X : FIN48 Footnote | FormAndLineReferenceDesc |
| Explanation | Income TaxesFinancial statement presentation follows the recommendations of ASC 740, Income Taxes. Under ASC 740, the Registry is required to report information regarding its exposure to various tax positions taken by the organization and requires a two-step process that separates recognition from measurement. The first step is determining whether a tax position has met the recognition threshold; the second step is measuring a tax position that meets the recognition threshold. Management believes that the Registry has adequately evaluated its current tax positions and has concluded that as of December 31, 2016, the Registry does not have any uncertain tax positions for which a reserve or an accrual for a tax liability would be necessary.The Registry has received notification from the Internal Revenue Service and the State of California that it qualifies for tax-exempt status under Section 501(c)(3) of the Internal Revenue Code and Section 23701d of the California Revenue and Taxation Code. This exemption is subject to periodic review by the federal and state taxing authorities and management is confident that the organization continues to satisfy all federal and state statutes in order to qualify for continued tax exemption status. The Registry may periodically receive unrelated business income requiring the organization to file separate tax returns under federal and state statutes. Under such conditions, the Registry calculates and accrues the applicable taxes payable. | ExplanationTxt |
Schedule L IRS990ScheduleL
Bus Tr Involve Interested Prsn BusTrInvolveInterestedPrsnGrp
Name Of Interested NameOfInterested
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | Assn Frontotemporal Degen | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Relationship Description | Contract | RelationshipDescriptionTxt |
| Transaction | $139,844 | TransactionAmt |
| Transaction | Consulting | TransactionDesc |
| Sharing Of Revenues | false | SharingOfRevenuesInd |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | Schedule L, Part V Supplemental Information | FormAndLineReferenceDesc |
| Explanation | The FTD Disorders Registry LLC ("FTD") utilizes services provided by Association for Frontotemporal Degeneration ("AFD" - a 501.C.3 exempt organization). A Board member of FTB is also a Director on the Board of AFD. During the year ended December 31, 2015, FTB remitted payments totaling $31,657 to AFD. | ExplanationTxt |
Schedule O IRS990ScheduleO
Supplemental Information Detail SupplementalInformationDetail (9 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| Form 990, Part VI, Line 2: Description of Business or Family Relationship of Officers, Directors, Et | Three of the directors have a family relationship. |
| Form 990, Part VI, Line 6: Explanation of Classes of Members or Shareholder | The FTD Disorders Registry LLC (the Registry) was formed as a Delaware Limited Liability Company in 2015 by two founding members: (1) the Association for Frontotemporal Degeneration and (2) The Bluefield Project To Cure Frontotemporal Dementia, both of which are 501(c)(3) nonprofit exempt organizations. |
| Form 990, Part VI, Line 7a: How Members or Shareholders Elect Governing Body | Members control appointment of respective Management Committee and Board members. |
| Form 990, Part VI, Line 11b: Form 990 Review Process | FORM 990 IS PREPARED BY AN OUTSIDE TAX PROFESSIONAL. THE FORM IS THEN REVIEWED BYAT LEAST ONE OF THE ORGANIZATION'S THE BOARD MEMBERS. AFTER A FULL REVIEW, THE FINAL VERSION OF THE TAX RETURN IS PROVIDED TO ALL MEMBERS OF THE ORGANIZATION'S VOTING BODY. A REPRESENTATIVE OF MANAGEMENT AUTHORIZES THE FINAL FORM 990 WHICH IS THEN E-FILED WITH THE INTERNAL REVENUE SERVICE. |
| Form 990, Part VI, Line 12c: Explanation of Monitoring and Enforcement of Conflicts | MEMBERS OF THE BOARD OF DIRECTORS REVIEW ALL POTENTIAL CONFLICTS OF INTEREST AT LEAST ANNUALLY. ALL BOARD MEMBERS ARE REQUIRED TO DISCLOSE POTENTIAL CONFLICTS AND ANY RELATED PARTY AFFILIATIONS. LOANS BETWEEN THE ORGANIZATION AND MEMBERS OF MANAGEMENT AND THE BOARD ARE STRICTLY PROHIBITED. THE ORGANIZATION SEEKS FULL TRANSPARENCY ON ALL RELATIONSHIPS. ANY POTENTIAL CONFLICTS (IN FACT OR APPEARANCE) ARE DISCUSSED OPENLY AND RESOLVED IN ACCORDANCE WITH THE ORGANIZATION'S POLICIES AND PROCEDURES. |
| Form 990, Part VI, Line 15a: Compensation Review & Approval Process - CEO, Top Management | The organization does not have any employees. |
| Form 990, Part VI, Line 15b: Compensation Review and Approval Process for Officers and Key Employees | The organization does not have any employees. |
| Form 990, Part VI, Line 19: Other Organization Documents Publicly Available | ALL OF THE ORGANIZATION'S GOVERNING DOCUMENTS, FINANCIAL STATEMENTS AND OTHER LEGALFILINGS ARE MAINTAINED IN A SECURE ENVIRONMENT AND HELD AVAILABLE FOR INSPECTION BYTAX AUTHORITIES AND THE GENERAL PUBLIC. TAX RETURNS ARE POSTED ANNUALLY TOWWW.GUIDESTAR.ORG (WHERE THEY ARE AVAILABLE FOR VIEWING AS ELECTRONIC COPIES) AND ARE ALSO AVAILABLE FOR A PHYSICAL INSPECTION AT THE ORGANIZATION'S OFFICE IN SAN FRANCISCO, CALIFORNIA. |
| Other Changes In Net Assets Or Fund Balances - Other Increases | Investment from Members = $75000 |
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