Liabilities / Assets
44th percentile
Higher debt load relative to assets than 44% of similar nonprofits.
990 • Fiscal year 2017 • EIN 47-3601782
Precomputed percentiles for this filing year versus similar nonprofits in the same peer cohort.
Liabilities / Assets
44th percentile
Higher debt load relative to assets than 44% of similar nonprofits.
Liabilities / Revenue
48th percentile
Higher debt load relative to revenue than 48% of similar nonprofits.
Net Margin
92nd percentile
Higher net margin than 92% of similar nonprofits.
Top Officer Pay
49th percentile
Higher top officer pay than 49% of similar nonprofits.
Top officer pay equals 0.0% of source-year revenue.
Asset Growth
92nd percentile
Faster asset growth than 92% of similar nonprofits.
Revenue Growth
95th percentile
Faster revenue growth than 95% of similar nonprofits.
Assets
Up$875,990
Up $360,175 (+70%) from 2016
Net Assets
Up$858,078
Up $357,256 (+71%) from 2016
Liabilities
Up$17,912
Up $2,919 (+19%) from 2016
Revenue
Up$611,229
Up $376,689 (+161%) from 2016
Expenses
Up$303,973
Up $39,139 (+15%) from 2016
Net Income
Up$307,256
Up $337,550 (+1114%) from 2016
The registry's mission is to facilitate research and advance research to accelerate treatment development for all types of ftd, a devastating neurodegenerative disease that strikes people in the prime of life and for which, currently, there is no cure.
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.
| Line | Beginning | End | Change |
|---|---|---|---|
| Assets | |||
| Cash and Non-Interest-Bearing Accounts | $329,637 | $691,154 | ▲ $361,517 |
| Land, Buildings, and Equipment, Net | $150,000 | $175,420 | ▲ $25,420 |
| Prepaid Expenses and Deferred Charges | $36,178 | $9,416 | ▼ $26,762 |
| Savings and Temporary Cash Investments | - | $0 | - |
| Accounts Receivable | - | $0 | - |
| Other Notes and Loans Receivable, Net | - | $0 | - |
| Pledges and Grants Receivable | - | $0 | - |
| Receivable From Disqualified Prsn | - | $0 | - |
| Receivables From Officers Etc | - | $0 | - |
| Investments Other Securities | - | $0 | - |
| Investments Program Related | - | $0 | - |
| Investments in Publicly Traded Securities | - | $0 | - |
| Intangible Assets | - | $0 | - |
| Inventories for Sale or Use | - | $0 | - |
| Total Assets | $515,815 | $875,990 | ▲ $360,175 |
| Other Assets Total | - | $0 | - |
| Liabilities | |||
| Accounts Payable and Accrued Expenses | $14,993 | $17,912 | ▲ $2,919 |
| Total Liabilities | $14,993 | $17,912 | ▲ $2,919 |
| Net Assets / Fund Balance | |||
| Unrestricted Net Assets | $500,822 | $858,078 | ▲ $357,256 |
| Total Net Assets Fund Balance | $500,822 | $858,078 | ▲ $357,256 |
| Total Liabilities and Net Assets / Fund Balance | $515,815 | $875,990 | ▲ $360,175 |
| Asset | Book Value | Depreciation | Basis |
|---|---|---|---|
| Other Land Buildings | $175,420 | $26,988 | $202,408 |
| Name | Title |
|---|---|
| Jary Larsen | President |
| Laura Mitic | Director |
| Patrick Brannelly | Director |
| Susan Dickinson | Director |
| Suzanne Markel-Fox | Secretary |
| Rodney Pearlman | Treasurer |
| Contractor | Services | Location | Compensation |
|---|---|---|---|
| Association for Frontotemporal Degeneration | Consulting/HR Staff | 290 King of Prussia Road, Radnor, PA 19087 | $154,419 |
| Line Item | Amount |
|---|---|
| Other Expenses | $303,973 |
| Total Fundraising Expense | $3,821 |
| Grants and Similar Amounts Paid | $0 |
| Professional Fundraising Fees | $0 |
| Salaries, Compensation, and Employee Benefits | $0 |
| Line Item | Program | Management | Fundraising | Total |
|---|---|---|---|---|
| Fees for Services Other | $34,040 | - | - | $34,040 |
| Advertising | $29,795 | - | - | $29,795 |
| Depreciation Depletion | $26,988 | - | - | $26,988 |
| Fees for Services Accounting | - | $13,439 | $1,067 | $14,506 |
| Office Expenses | $3,954 | $7,512 | $395 | $11,861 |
| Travel | - | $8,458 | $2,149 | $10,607 |
| Fees for Services Legal | - | $6,837 | - | $6,837 |
| Insurance | - | $3,985 | $210 | $4,195 |
| Other Expenses | $70 | $10,656 | - | $70 |
| Total Functional Expenses | $233,823 | $66,329 | $3,821 | $303,973 |
| Line Item | Amount |
|---|---|
| Expenses per Audited Statements | $303,973 |
| Total Expenses per Audited Statements | $303,973 |
| Total Expenses per Form 990 | $303,973 |
| Line Item | Amount |
|---|---|
| Professional Fundraising Fees | $0 |
| Interested Party | Relationship | Description | Shared Revenue | Amount |
|---|---|---|---|---|
| - | Contract | Consulting | No | $154,418 |
| Line Item | Beginning | End | Change |
|---|---|---|---|
| Receivables from Disqualified Persons | - | $0 | - |
| Receivables from Officers, Directors, Trustees, and Key Employees | - | $0 | - |
“The following members of the Board of Directors of The FTD Disorders Registry LLC have relationships with certain related parties: Rodney Pearlman is also President of The Bluefield Project to Cure FTD, A donor organization and co-founder of The FTD Disorders Registry LLC. Susan Dickinson is CEO of The Association for Frontotemporal Degeneration, A donor organization and co-founder of The FTD Disorders Registry LLC. Staff at The Association for Frontotemporal Degeneration perform sub-contract work for The FTD Disorders Registry LLC. Jary Larsen is a past Chair and former Board member of The Association for Frontotemporal Degeneration Board of Directors. Patrick Brannelly is Program Director of the Tau Consortium, of the Rainwater Charitable Trust, a donor organization to The Association for Frontotemporal Degeneration, which contributed $299,341 during the year ended December 31, 2017. Laura Mitic is a part-time employee of The Bluefield Project to Cure FTD.”
“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.”
“Members control appointment of respective Management Committee and Board members.”
“Form 990 is prepared by an outside tax professional. The form is then reviewed byat least one of the organization's 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.”
“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.”
“The organization does not have any employees.”
“The organization does not have any employees.”
“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.”
“Investment from Members = $50000”
“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, 2017, 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.”
This appendix keeps the raw XML leaves available for debugging and edge-case review. The human report above is the primary experience.
| Path | # | Value |
|---|---|---|
| IRS990/AccountantCompileOrReviewInd | 0 | false |
| IRS990/AccountsPayableAccrExpnssGrp/BOYAmt | 0 | 14993 |
| IRS990/AccountsPayableAccrExpnssGrp/EOYAmt | 0 | 17912 |
| IRS990/AccountsReceivableGrp/EOYAmt | 0 | 0 |
| IRS990/ActivitiesConductedPrtshpInd | 0 | false |
| IRS990/ActivityOrMissionDesc | 0 | 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. |
| IRS990/AdvertisingGrp/ProgramServicesAmt | 0 | 29795 |
| IRS990/AdvertisingGrp/TotalAmt | 0 | 29795 |
| IRS990/AllAffiliatesIncludedInd | 0 | false |
| IRS990/AllOtherContributionsAmt | 0 | 611074 |
| IRS990/AllOtherExpensesGrp/TotalAmt | 0 | 0 |
| IRS990/AnnualDisclosureCoveredPrsnInd | 0 | true |
| IRS990/AuditCommitteeInd | 0 | true |
| IRS990/BackupWthldComplianceInd | 0 | true |
| IRS990/BenefitsToMembersGrp/TotalAmt | 0 | 0 |
| IRS990/BooksInCareOfDetail/PersonNm | 0 | Rodney Pearlman |
| IRS990/BooksInCareOfDetail/PhoneNum | 0 | 4156261501 |
| IRS990/BooksInCareOfDetail/USAddress/AddressLine1Txt | 0 | 637 Carolina Street |
| IRS990/BooksInCareOfDetail/USAddress/CityNm | 0 | San Francisco |
| IRS990/BooksInCareOfDetail/USAddress/StateAbbreviationCd | 0 | CA |
| IRS990/BooksInCareOfDetail/USAddress/ZIPCd | 0 | 941072725 |
| IRS990/BusinessRlnWithFamMemInd | 0 | false |
| IRS990/BusinessRlnWithOfficerEntInd | 0 | true |
| IRS990/BusinessRlnWithOrgMemInd | 0 | true |
| IRS990/CashNonInterestBearingGrp/BOYAmt | 0 | 329637 |
| IRS990/CashNonInterestBearingGrp/EOYAmt | 0 | 691154 |
| IRS990/ChangeToOrgDocumentsInd | 0 | false |
| IRS990/CntrctRcvdGreaterThan100KCnt | 0 | 1 |
| IRS990/CollectionsOfArtInd | 0 | false |
| IRS990/CompCurrentOfcrDirectorsGrp/TotalAmt | 0 | 0 |
| IRS990/CompDisqualPersonsGrp/TotalAmt | 0 | 0 |
| IRS990/CompensationFromOtherSrcsInd | 0 | false |
| IRS990/CompensationProcessCEOInd | 0 | true |
| IRS990/CompensationProcessOtherInd | 0 | true |
| IRS990/ConferencesMeetingsGrp/TotalAmt | 0 | 0 |
| IRS990/ConflictOfInterestPolicyInd | 0 | true |
| IRS990/ConservationEasementsInd | 0 | false |
| IRS990/ConsolidatedAuditFinclStmtInd | 0 | false |
| IRS990/ContractorCompensationGrp/CompensationAmt | 0 | 154419 |
| IRS990/ContractorCompensationGrp/ContractorAddress/USAddress/AddressLine1Txt | 0 | 290 King of Prussia Road |
| IRS990/ContractorCompensationGrp/ContractorAddress/USAddress/CityNm | 0 | Radnor |
| IRS990/ContractorCompensationGrp/ContractorAddress/USAddress/StateAbbreviationCd | 0 | PA |
| IRS990/ContractorCompensationGrp/ContractorAddress/USAddress/ZIPCd | 0 | 19087 |
| IRS990/ContractorCompensationGrp/ContractorName/BusinessName/BusinessNameLine1Txt | 0 | Association for Frontotemporal Degeneration |
| IRS990/ContractorCompensationGrp/ServicesDesc | 0 | Consulting/HR Staff |
| IRS990/CreditCounselingInd | 0 | false |
| IRS990/CYBenefitsPaidToMembersAmt | 0 | 0 |
| IRS990/CYContributionsGrantsAmt | 0 | 611074 |
| IRS990/CYGrantsAndSimilarPaidAmt | 0 | 0 |
| IRS990/CYInvestmentIncomeAmt | 0 | 155 |
| IRS990/CYOtherExpensesAmt | 0 | 303973 |
| IRS990/CYOtherRevenueAmt | 0 | 0 |
| IRS990/CYProgramServiceRevenueAmt | 0 | 0 |
| IRS990/CYRevenuesLessExpensesAmt | 0 | 307256 |
| IRS990/CYSalariesCompEmpBnftPaidAmt | 0 | 0 |
| IRS990/CYTotalExpensesAmt | 0 | 303973 |
| IRS990/CYTotalFundraisingExpenseAmt | 0 | 3821 |
| IRS990/CYTotalProfFndrsngExpnsAmt | 0 | 0 |
| IRS990/CYTotalRevenueAmt | 0 | 611229 |
| IRS990/DAFExcessBusinessHoldingsInd | 0 | false |
| IRS990/DecisionsSubjectToApprovaInd | 0 | true |
| IRS990/DeductibleArtContributionInd | 0 | false |
| IRS990/DeductibleNonCashContriInd | 0 | false |
| IRS990/DelegationOfMgmtDutiesInd | 0 | false |
| IRS990/DepreciationDepletionGrp/ProgramServicesAmt | 0 | 26988 |
| IRS990/DepreciationDepletionGrp/TotalAmt | 0 | 26988 |
| IRS990/Desc | 0 | 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. |
| IRS990/DescribedInSection501c3Ind | 0 | true |
| IRS990/DisregardedEntityInd | 0 | false |
| IRS990/DistributionToDonorInd | 0 | false |
| IRS990/DocumentRetentionPolicyInd | 0 | true |
| IRS990/DonorAdvisedFundInd | 0 | false |
| IRS990/ElectionOfBoardMembersInd | 0 | true |
| IRS990/EmployeeCnt | 0 | 0 |
| IRS990/EmploymentTaxReturnsFiledInd | 0 | false |
| IRS990/EngagedInExcessBenefitTransInd | 0 | false |
| IRS990/EscrowAccountInd | 0 | false |
| IRS990/ExpenseAmt | 0 | 233823 |
| IRS990/FamilyOrBusinessRlnInd | 0 | true |
| IRS990/FederalGrantAuditRequiredInd | 0 | false |
| IRS990/FeesForServicesAccountingGrp/FundraisingAmt | 0 | 1067 |
| IRS990/FeesForServicesAccountingGrp/ManagementAndGeneralAmt | 0 | 13439 |
| IRS990/FeesForServicesAccountingGrp/TotalAmt | 0 | 14506 |
| IRS990/FeesForServicesLegalGrp/ManagementAndGeneralAmt | 0 | 6837 |
| IRS990/FeesForServicesLegalGrp/TotalAmt | 0 | 6837 |
| IRS990/FeesForServicesLobbyingGrp/TotalAmt | 0 | 0 |
| IRS990/FeesForServicesManagementGrp/TotalAmt | 0 | 0 |
| IRS990/FeesForServicesOtherGrp/ProgramServicesAmt | 0 | 34040 |
| IRS990/FeesForServicesOtherGrp/TotalAmt | 0 | 34040 |
| IRS990/FeesForServicesProfFundraising/TotalAmt | 0 | 0 |
| IRS990/FeesForSrvcInvstMgmntFeesGrp/TotalAmt | 0 | 0 |
| IRS990/ForeignActivitiesInd | 0 | false |
| IRS990/ForeignFinancialAccountInd | 0 | false |
| IRS990/ForeignGrantsGrp/TotalAmt | 0 | 0 |
| IRS990/ForeignOfficeInd | 0 | false |
| IRS990/Form1098CFiledInd | 0 | false |
| IRS990/Form8282FiledCnt | 0 | 0 |
| IRS990/Form8282PropertyDisposedOfInd | 0 | false |
| IRS990/Form8899Filedind | 0 | false |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRltdOrgRt | 0 | 0.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRltdOrgRt | 1 | 0.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRltdOrgRt | 2 | 0.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRltdOrgRt | 3 | 0.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRltdOrgRt | 4 | 0.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRltdOrgRt | 5 | 0.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 0 | 4.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 1 | 4.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 2 | 4.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 3 | 4.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 4 | 4.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 5 | 4.00 |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 0 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 1 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 2 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 3 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 4 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 5 | X |
| IRS990/Form990PartVIISectionAGrp/OfficerInd | 0 | X |
| IRS990/Form990PartVIISectionAGrp/OfficerInd | 1 | X |
| IRS990/Form990PartVIISectionAGrp/OfficerInd | 2 | X |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 0 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 1 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 2 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 3 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 4 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 5 | 0 |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 0 | Jary Larsen |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 1 | Rodney Pearlman |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 2 | Suzanne Markel-Fox |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 3 | Patrick Brannelly |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 4 | Susan Dickinson |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 5 | Laura Mitic |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 0 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 1 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 2 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 3 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 4 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 5 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 0 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 1 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 2 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 3 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 4 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 5 | 0 |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 0 | President |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 1 | Treasurer |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 2 | Secretary |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 3 | Director |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 4 | Director |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 5 | Director |
| IRS990/Form990ProvidedToGvrnBodyInd | 0 | true |
| IRS990/Form990TFiledInd | 0 | false |
| IRS990/FormationYr | 0 | 2015 |
| IRS990/FormerOfcrEmployeesListedInd | 0 | false |
| IRS990/FSAuditedBasisGrp/SeparateBasisFinclStmtInd | 0 | X |
| IRS990/FSAuditedInd | 0 | true |
| IRS990/FundraisingActivitiesInd | 0 | false |
| IRS990/GamingActivitiesInd | 0 | false |
| IRS990/GoverningBodyVotingMembersCnt | 0 | 6 |
| IRS990/GrantsToDomesticIndividualsGrp/TotalAmt | 0 | 0 |
| IRS990/GrantsToDomesticOrgsGrp/TotalAmt | 0 | 0 |
| IRS990/GrantsToIndividualsInd | 0 | false |
| IRS990/GrantsToOrganizationsInd | 0 | false |
| IRS990/GrantToRelatedPersonInd | 0 | false |
| IRS990/GrossReceiptsAmt | 0 | 611229 |
| IRS990/GroupReturnForAffiliatesInd | 0 | false |
| IRS990/IncludeFIN48FootnoteInd | 0 | true |
| IRS990/IncmFromInvestBondProceedsGrp/TotalRevenueColumnAmt | 0 | 0 |
| IRS990/IndependentAuditFinclStmtInd | 0 | true |
| IRS990/IndependentVotingMemberCnt | 0 | 1 |
| IRS990/IndivRcvdGreaterThan100KCnt | 0 | 0 |
| IRS990/IndoorTanningServicesInd | 0 | false |
| IRS990/InfoInScheduleOPartIXInd | 0 | X |
| IRS990/InfoInScheduleOPartVIInd | 0 | X |
| IRS990/InfoInScheduleOPartXIInd | 0 | X |
| IRS990/InformationTechnologyGrp/TotalAmt | 0 | 0 |
| IRS990/InsuranceGrp/FundraisingAmt | 0 | 210 |
| IRS990/InsuranceGrp/ManagementAndGeneralAmt | 0 | 3985 |
| IRS990/InsuranceGrp/TotalAmt | 0 | 4195 |
| IRS990/IntangibleAssetsGrp/EOYAmt | 0 | 0 |
| IRS990/InterestGrp/TotalAmt | 0 | 0 |
| IRS990/InventoriesForSaleOrUseGrp/EOYAmt | 0 | 0 |
| IRS990/InvestmentIncomeGrp/ExclusionAmt | 0 | 155 |
| IRS990/InvestmentIncomeGrp/TotalRevenueColumnAmt | 0 | 155 |
| IRS990/InvestmentInJointVentureInd | 0 | false |
| IRS990/InvestmentsOtherSecuritiesGrp/EOYAmt | 0 | 0 |
| IRS990/InvestmentsProgramRelatedGrp/EOYAmt | 0 | 0 |
| IRS990/InvestmentsPubTradedSecGrp/EOYAmt | 0 | 0 |
| IRS990/InvestTaxExemptBondsInd | 0 | false |
| IRS990/IRPDocumentCnt | 0 | 0 |
| IRS990/IRPDocumentW2GCnt | 0 | 0 |
| IRS990/LandBldgEquipAccumDeprecAmt | 0 | 26988 |
| IRS990/LandBldgEquipBasisNetGrp/BOYAmt | 0 | 150000 |
| IRS990/LandBldgEquipBasisNetGrp/EOYAmt | 0 | 175420 |
| IRS990/LandBldgEquipCostOrOtherBssAmt | 0 | 202408 |
| IRS990/LegalDomicileStateCd | 0 | DE |
| IRS990/LicensedMoreThanOneStateInd | 0 | false |
| IRS990/LoanOutstandingInd | 0 | false |
| IRS990/LobbyingActivitiesInd | 0 | false |
| IRS990/LocalChaptersInd | 0 | false |
| IRS990/MaterialDiversionOrMisuseInd | 0 | false |
| IRS990/MembersOrStockholdersInd | 0 | true |
| IRS990/MethodOfAccountingAccrualInd | 0 | X |
| IRS990/MinutesOfCommitteesInd | 0 | true |
| IRS990/MinutesOfGoverningBodyInd | 0 | true |
| IRS990/MissionDesc | 0 | 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. |
| IRS990/MoreThan5000KToIndividualsInd | 0 | false |
| IRS990/MoreThan5000KToOrgInd | 0 | false |
| IRS990/NetAssetsOrFundBalancesBOYAmt | 0 | 500822 |
| IRS990/NetAssetsOrFundBalancesEOYAmt | 0 | 858078 |
| IRS990/NetGainOrLossInvestmentsGrp/TotalRevenueColumnAmt | 0 | 0 |
| IRS990/NetIncmFromFundraisingEvtGrp/TotalRevenueColumnAmt | 0 | 0 |
| IRS990/NetIncomeFromGamingGrp/TotalRevenueColumnAmt | 0 | 0 |
| IRS990/NetIncomeOrLossGrp/TotalRevenueColumnAmt | 0 | 0 |
| IRS990/NetRentalIncomeOrLossGrp/TotalRevenueColumnAmt | 0 | 0 |
| IRS990/NoListedPersonsCompensatedInd | 0 | X |
| IRS990/NoncashContributionsAmt | 0 | 10656 |
| IRS990/NondeductibleContributionsInd | 0 | false |
| IRS990/OccupancyGrp/TotalAmt | 0 | 0 |
| IRS990/OfficeExpensesGrp/FundraisingAmt | 0 | 395 |
| IRS990/OfficeExpensesGrp/ManagementAndGeneralAmt | 0 | 7512 |
| IRS990/OfficeExpensesGrp/ProgramServicesAmt | 0 | 3954 |
| IRS990/OfficeExpensesGrp/TotalAmt | 0 | 11861 |
| IRS990/OfficerMailingAddressInd | 0 | false |
| IRS990/OnBehalfOfIssuerInd | 0 | false |
| IRS990/OperateHospitalInd | 0 | false |
| IRS990/Organization501c3Ind | 0 | X |
| IRS990/OrganizationFollowsSFAS117Ind | 0 | X |
| IRS990/OrgFiledInLieuOfForm1041Ind | 0 | false |
| IRS990/OtherAssetsTotalGrp/EOYAmt | 0 | 0 |
| IRS990/OtherChangesInNetAssetsAmt | 0 | 50000 |
| IRS990/OtherEmployeeBenefitsGrp/TotalAmt | 0 | 0 |
| IRS990/OtherExpensesGrp/Desc | 0 | FTD contracted expenses |
| IRS990/OtherExpensesGrp/Desc | 1 | In kind expenses |
| IRS990/OtherExpensesGrp/Desc | 2 | Taxes and fees |
| IRS990/OtherExpensesGrp/ManagementAndGeneralAmt | 0 | 15442 |
| IRS990/OtherExpensesGrp/ManagementAndGeneralAmt | 1 | 10656 |
| IRS990/OtherExpensesGrp/ProgramServicesAmt | 0 | 138976 |
| IRS990/OtherExpensesGrp/ProgramServicesAmt | 1 | 70 |
| IRS990/OtherExpensesGrp/TotalAmt | 0 | 154418 |
| IRS990/OtherExpensesGrp/TotalAmt | 1 | 10656 |
| IRS990/OtherExpensesGrp/TotalAmt | 2 | 70 |
| IRS990/OtherRevenueTotalAmt | 0 | 0 |
| IRS990/OtherSalariesAndWagesGrp/TotalAmt | 0 | 0 |
| IRS990/OtherWebsiteInd | 0 | X |
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| IRS990/PrincipalOfficerNm | 0 | Rodney Pearlman |
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| IRS990/ProgSrvcAccomActy2Grp/Desc | 0 | 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. |
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| IRS990ScheduleD/SupplementalInformationDetail/ExplanationTxt | 0 | 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, 2017, 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. |
| IRS990ScheduleD/SupplementalInformationDetail/FormAndLineReferenceDesc | 0 | Part X : FIN48 Footnote |
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| IRS990ScheduleL/BusTrInvolveInterestedPrsnGrp/NameOfInterested/BusinessName/BusinessNameLine1Txt | 0 | Assn Frontotemporal Degen |
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| IRS990ScheduleL/SupplementalInformationDetail/ExplanationTxt | 0 | The FTD Disorders Registry LLC ("FTDDR") utilizes services provided by Association for Frontotemporal Degeneration ("AFTD" - a 501.C.3 exempt organization). A Board member of AFTD is also a Director on the Board of FTDDR. During the year ended December 31, 2017, FTDDR remitted payments totaling $154,419 to AFTD. |
| IRS990ScheduleL/SupplementalInformationDetail/FormAndLineReferenceDesc | 0 | Schedule L, Part V Supplemental Information |
| IRS990/ScheduleORequiredInd | 0 | true |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 0 | The following members of the Board of Directors of The FTD Disorders Registry LLC have relationships with certain related parties: Rodney Pearlman is also President of The Bluefield Project to Cure FTD, A donor organization and co-founder of The FTD Disorders Registry LLC. Susan Dickinson is CEO of The Association for Frontotemporal Degeneration, A donor organization and co-founder of The FTD Disorders Registry LLC. Staff at The Association for Frontotemporal Degeneration perform sub-contract work for The FTD Disorders Registry LLC. Jary Larsen is a past Chair and former Board member of The Association for Frontotemporal Degeneration Board of Directors. Patrick Brannelly is Program Director of the Tau Consortium, of the Rainwater Charitable Trust, a donor organization to The Association for Frontotemporal Degeneration, which contributed $299,341 during the year ended December 31, 2017. Laura Mitic is a part-time employee of The Bluefield Project to Cure FTD. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 1 | 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. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 2 | Members control appointment of respective Management Committee and Board members. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 3 | FORM 990 IS PREPARED BY AN OUTSIDE TAX PROFESSIONAL. THE FORM IS THEN REVIEWED BYAT LEAST ONE OF THE ORGANIZATION'S 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. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 4 | 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. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 5 | The organization does not have any employees. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 6 | The organization does not have any employees. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 7 | 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. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 8 | Investment from Members = $50000 |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 0 | Form 990, Part VI, Line 2: Description of Business or Family Relationship of Officers, Directors, Et |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 1 | Form 990, Part VI, Line 6: Explanation of Classes of Members or Shareholder |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 2 | Form 990, Part VI, Line 7a: How Members or Shareholders Elect Governing Body |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 3 | Form 990, Part VI, Line 11b: Form 990 Review Process |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 4 | Form 990, Part VI, Line 12c: Explanation of Monitoring and Enforcement of Conflicts |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 5 | Form 990, Part VI, Line 15a: Compensation Review & Approval Process - CEO, Top Management |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 6 | Form 990, Part VI, Line 15b: Compensation Review and Approval Process for Officers and Key Employees |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 7 | Form 990, Part VI, Line 19: Other Organization Documents Publicly Available |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 8 | Other Changes In Net Assets Or Fund Balances - Other Increases |
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Displayed year
2017 • Form 990Detailed filing. Detailed filing data is available for this year.