2020-11-14T08:08:02-08:00 2019-12-31 680260103 Regalia & Associates CPAs 103 Town Country Dr Ste K Danville CA 94526 990 2019-01-01 473601782 The FTD Disorders Registry LLC FTDD 4156261501 2700 Horizon Drive King of Prussia PA 19406 Rodney Pearlman Treasurer 4156261501 2020-11-14 true Douglas W Regalia P00186389 9253140390 2019 2022-09-23 18:48:47Z X Rodney Pearlman 637 Carolina Street San Francisco CA 941072725 762008 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 collects data from persons diagnosed, their care (cont. pg 2) 6 6 0 0 486811 761664 0 313 344 2032 0 489156 762008 0 0 0 0 0 369382 537839 369382 537839 119774 224169 1008189 1250745 30337 48724 977852 1202021 partners, and those at risk for FTD to advance research and understanding of this condition. See additional information on Schedule O. false false 480681 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. 480681 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 true false false false true 0 0 true 0 false false false false false false false 0 false false false false false false false X 6 6 true false true false true true true true true false false true true true true true true false true false CA DE X 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 151673 1 171604 590060 761664 0 344 344 0 0 0 0 0 0 0 Other income 621500 0 762008 344 0 0 0 0 0 0 0 0 0 0 0 68 68 15573 15573 0 0 0 8592 8449 143 63603 63603 14137 6140 7997 236931 234835 2096 0 0 12075 12042 33 0 0 0 0 40482 40482 4712 4712 FTD contracted expenses 141092 115130 25962 Taxes and fees 574 574 0 537839 480681 57158 0 792959 1057835 0 0 66812 73260 0 0 0 0 13480 25194 202408 107952 134938 94456 0 0 0 0 0 1008189 1250745 30337 48724 30337 48724 X 977852 1202021 977852 1202021 1008189 1250745 224169 X false true X true false X 350000 224341 600418 486811 761664 2423234 0 0 350000 224341 600418 486811 761664 2423234 1873766 549468 45 119 155 313 344 976 0 2032 2032 2426242 0.22650 0.20430 X Current Year Facts and Circumstances: As a nonprofit organization, The FTD Disorders Registry must be able to demonstrate that it "normally" receives at least 33 1/3% of its support from the general public. In calculating this support test, Form 990 Schedule A reflects a support percentage of almost 23%. The FTD Disorders Registry believes that other factors provide sufficient evidence that the organization is a valid publicly supported nonprofit charity. The other test is a facts and circumstances test. Under this test, the organization is treated as publicly supported if it normally receives a substantial part of its support from governmental units, from direct or indirect contributions from the general public, and if it is organized and operated to attract new and additional public or governmental support on a continuous basis [Reg. Section 1.170A-9(e)(3)]. The organization will be treated as normally receiving substantial public support if at least 10 percent of the total support normally received by the organization is governmental or public support [Reg. Section 1.170A-9(e)(3)(i)]. An organization meets the requirement of attracting new and additional public or governmental support if it maintains a continuous and bona fide program for soliciting funds from the general public or it carries on activities designed to attract support from governmental units, churches, educational organizations, or other publicly supported charitable or cultural organizations [Reg. Section 1.170A-9(e)(3)(ii)].The FTD Disorders Registry reflects a cumulative public support test of 22% only because it received early funding from a narrow group of donors. However, the organization has recently expanded its donor base and continues to receive funding from a wider segment of society. Additionally, the organization principally spends its funds on medical research activities at a variety of domestic and international medical facilities, with the goal of improving medical services to all of humanity.The FTD Disorders Registry has a diverse Board of Directors, with representatives from a variety of backgrounds providing guidance, support and foresight. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 202408 107952 94456 94456 X 773000 10992 10992 762008 762008 548831 10992 10992 537839 537839 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, 2019, 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 141092 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, 2019, FTDDR remitted payments totaling $141,092 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, which is an organization with a 33.4% member interest in the Registry. The Registry received $100,000 in funding from The Bluefield Project to Cure FTD during the year ended December 31, 2019. In addition, The Bluefield Project to Cure FTD donated $10,992 of in-kind services to the Registry during the year ended December 31, 2019. Susan Dickinson is CEO of The Association for Frontotemporal Degeneration (AFTD). AFTD has a 33.3% 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 year ended December 31, 2019, the Registry remitted payments totaling $151,673 to AFTD for services rendered. At December 31, 2019, accounts payable to AFTD amounted to $22,097. AFTD contributed $150,000 to The FTD Disorders Registry LLC during the year ended December 31, 2019.* During 2019, The Association for Frontotemporal Degeneration and The Bluefield Project to Cure Frontotemporal Dementia, each owing a fifty percent (50%) membership interest in The FTD Disorders Registry, collectively transferred and delivered a thirty-three and three-tenths percent (33.3%) membership interest in The FTD Disorders Registry to The Rainwater Charitable Foundation. At December 31, 2019, The Rainwater Charitable Foundation held a 33.3% member interest in the Registry. The Registry received $200,000 in funding from The Rainwater Charitable Foundation for the year ended December 31, 2019. Patrick Brannelly is Program Director of the Tau Consortium, of the Rainwater Charitable Trust, a donor organization which contributed $200,000 during the year ended December 31, 2019, as noted above. Laura Mitic is an employee of The Bluefield Project to Cure FTD. Form 990, Part VI, Line 4: Description of Significant Changes to Organizational Documents The Association for Frontotemporal Degeneration and The Bluefield Project to Cure Frontotemporal Dementia, each owing a fifty percent (50%) membership interest in The FTD Disorders Registry, collectively transferred and delivered a thirty-three and three-tenths percent (33.3%) membership interest in The FTD Disorders Registry during 2019. 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 each appoint one representative to the Management Committee; the Management Committee has authority to elect additional members to the 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 AND CAN BE ACCESSED DIGITALLY FROM ITS WEBSITE. Additional Mission Activities 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. 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 2700 Horizon Drive Suite 120 King of Prussia PA 19406 412073220 Medical Research and Funding PA 501c3 170(b)(1)(A)(vi) N/A false Rainwater Charitable Foundation 777 Main Street Suite 2250 Forth Worth TX 76102 800870036 Charitable Giving TX 501c3 170(b)(1)(A)(vi) N/A false false false true false false false false false false false false false true true true false 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 m 151673 Cash Basis Rainwater Charitable Foundation c 200000 Cash Basis