The Ftd Disorders Registry LLC

“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.”

“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.”

“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 each appoint one representative to the Management Committee; the Management Committee has authority to elect additional members to the Management Committee.”

“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.”

“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.”

“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 and can be accessed digitally from its website.”

“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.”