2019-08-09T15:10:53-07:00 2018-12-31 680260103 Regalia & Associates CPAs 103 Town Country Dr Ste K Danville CA 94526 990 2018-01-01 473601782 The FTD Disorders Registry LLC FTDD 4156261501 637 Carolina Street San Francisco CA 94107 Rodney Pearlman Treasurer 4156261501 2019-08-09 true Douglas W Regalia P00186389 9253140390 2018 2019-02-21 02:37:17Z Rodney Pearlman 637 Carolina Street San Francisco CA 941072725 489156 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 611074 486811 0 155 313 2032 611229 489156 0 0 0 0 0 303973 369382 303973 369382 307256 119774 875990 1008189 17912 30337 858078 977852 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 312020 2032 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. 312020 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 false false false 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 false false X 6 1 true false false false true true true true true false false true true true true true true false 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 Laura Mitic 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 Diana Shineman 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 Services 153143 1 66811 420000 486811 0 313 313 0 0 0 0 0 0 0 Other income 621500 2032 2032 2032 489156 2032 313 0 0 0 0 0 0 0 0 0 0 0 2425 700 1725 14670 14670 0 0 0 28861 28440 421 0 9328 5607 3721 104327 103690 637 0 0 11295 11057 238 0 0 0 0 40482 40482 4476 4476 FTD contracted expenses 153143 122044 31099 Taxes and fees 375 375 0 369382 312020 57362 0 691154 792959 0 0 66812 0 0 0 0 9416 13480 202408 67470 175420 134938 0 0 0 0 0 875990 1008189 17912 30337 17912 30337 X 858078 977852 858078 977852 875990 1008189 119774 X false true X true false X 350000 224341 600418 486811 1661570 0 0 350000 224341 600418 486811 1661570 1469486 192084 45 119 155 313 632 0 2032 2032 1664234 X 0.00000 202408 67470 134938 134938 X 499812 10656 10656 489156 489156 380038 10656 10656 369382 369382 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, 2018, 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 153143 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). During the year ended December 31, 2018, FTDDR remitted payments totaling $153,143 to AFTD. Form 990, Part VI, Line 2: Description of Business or Family Relationship of Officers, Directors, Et The following members of the Management Committee of The FTD Disorders Registry LLC have relationships with certain related parties:Rodney Pearlman is President of The Bluefield Project to Cure FTD, a co-founder with 50% member interest in the Registry. The Registry received $100,000 and $150,000 in funding from The Bluefield Project to Cure FTD in the years ended December 31, 2018 and 2017, respectively. In addition, The Bluefield Project to Cure FTD donated $10,656 of in-kind services to the Registry during both years ended December 31, 2018 and 2017.Susan Dickinson is CEO of The Association for Frontotemporal Degeneration (AFTD). AFTD is a co-founder with a 50% member interest in the Registry. The Registry has a contract with AFTD to provide day-to-day oversight and operations for the Registry. During the years ended December 31, 2018 and 2017, the Registry remitted payments totaling $153,143 and $154,418, respectively to AFTD for services rendered. At December 31, 2018 and 2017, accounts payable to AFTD were $20,509 and $15,650, respectively. AFTD contributed $150,000 to The FTD Disorders Registry LLC during the each of the years ended December 31, 2018 and 2017.Jary Larsen is a past Chair and former Board member of The Association for Frontotemporal Degeneration Management Committee.Patrick Brannelly is Program Director of the Tau Consortium, of the Rainwater Charitable Trust, a donor organization which contributed $170,000 and $299,341 during the years ended December 31, 2018 and 2017, respectively.Laura Mitic is an 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. 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 TWO MEMBERS OF THE MANAGEMENT COMMITTEE. 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 MANAGEMENT COMMITTEE REVIEW ALL POTENTIAL CONFLICTS OF INTEREST AT LEAST ANNUALLY. ALL MEMBERS ARE REQUIRED TO DISCLOSE POTENTIAL CONFLICTS AND ANY RELATED PARTY AFFILIATIONS. LOANS BETWEEN THE ORGANIZATION AND MEMBERS OF MANAGEMENT AND THE MANAGEMENT COMMITTEE 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 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. 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 The Assn for Frontotemporal Degeneration 290 King of Prussia Road Suite 320 Radnor PA 19087 412073220 Medical Research and Funding PA 501c3 170(b)(1)(A)(vi) N/A false false false true false false false false false false false false false false true true true false false false Bluefield Project to Cure Frontotempral c 100000 Cash Basis The Assn for Frontotemporal Degeneration c 150000 Cash Basis The Assn for Frontotemporal Degeneration p 153143 Cash Basis