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, 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.”

“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.”

“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.”