2018-06-28T14:15:36-07:00 2017-12-31 680260103 Regalia & Associates CPAs 103 Town Country Dr Ste K Danville CA 94526 990 2017-01-01 473601782 The FTD Disorders Registry LLC FTDD 4156261501 637 Carolina Street San Francisco CA 94107 Rodney Pearlman Treasurer 4156261501 2018-06-28 true Douglas W Regalia P00186389 9253140390 2017 2022-09-23 18:48:47Z Rodney Pearlman 637 Carolina Street San Francisco CA 941072725 611229 false false X www.ftdregistry.org X 2015 DE 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. 6 1 0 0 234421 611074 0 119 155 0 234540 611229 0 0 0 0 3821 264834 303973 264834 303973 -30294 307256 515815 875990 14993 17912 500822 858078 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. false false 233823 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. 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. 233823 true true false false false false false false false false true false false false false true true false false false false false false false false false false false false false false false false false false false false false true false true false false false false false true false false false true 0 0 true 0 false false false false false false false false false 0 false false false false false false false false false false X 6 1 true false false false true true true true true false false true true true true true true true true false CA DE X X Rodney Pearlman 4156261501 637 Carolina Street San Francisco CA 941072725 X Jary Larsen President 4.00 0.00 X X 0 0 0 Rodney Pearlman Treasurer 4.00 0.00 X X 0 0 0 Suzanne Markel-Fox Secretary 4.00 0.00 X X 0 0 0 Patrick Brannelly Director 4.00 0.00 X 0 0 0 Susan Dickinson Director 4.00 0.00 X 0 0 0 Laura Mitic Director 4.00 0.00 X 0 0 0 0 false false false Association for Frontotemporal Degeneration 290 King of Prussia Road Radnor PA 19087 Consulting/HR Staff 154419 1 611074 10656 611074 0 155 155 0 0 0 0 0 0 0 0 611229 155 X 0 0 0 0 0 0 0 0 0 0 0 6837 6837 14506 13439 1067 0 0 0 34040 34040 29795 29795 11861 3954 7512 395 0 0 0 10607 8458 2149 0 0 0 0 26988 26988 4195 3985 210 FTD contracted expenses 154418 138976 15442 In kind expenses 10656 10656 Taxes and fees 70 70 0 303973 233823 66329 3821 329637 691154 0 0 0 0 0 0 0 36178 9416 202408 26988 150000 175420 0 0 0 0 0 515815 875990 14993 17912 14993 17912 X 500822 858078 500822 858078 515815 875990 X 307256 50000 X false true X true false X 350000 224341 600418 1174759 0 0 350000 224341 600418 1174759 1078835 95924 45 119 155 319 0 0 1175078 X 0.00000 RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 202408 26988 175420 175420 X 611229 611229 611229 303973 303973 303973 Part X : FIN48 Footnote 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. Assn Frontotemporal Degen Contract 154418 Consulting false Schedule L, Part V Supplemental Information 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. Form 990, Part VI, Line 2: Description of Business or Family Relationship of Officers, Directors, Et 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. 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 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 = $50000 Bluefield Project to Cure Frontotempral 637 Carolina Street San Francisco CA 94107 272444495 Medical Research and Funding CA 501c3 170(b)(1)(A)(vi) N/A false false false false false false false false false false false false false false true true false false false true Bluefield Project to Cure Frontotempral s 150000 Cash Basis