The Ftd Disorders Registry LLC

“The bluefield project to cure frontotemporal dementia llc member, 50% interest, co-founder: rodney pearlman is president of bluefield and served as the treasurer of the registry and a member of the management committee until it was dissolved in september 2020. The registry received $150,000 in contributed income from bluefield in the year ended december 31, 2020. In addition, bluefield donated $16,805 of in-kind services to the registry during the year ended december 31, 2020. Laura mitic is an employee of bluefield and served as a member of the dissolved management committee. The association for frontotemporal degeneration llc managing member, 50% interest, co-founder: the registry has a contract with aftd to provide day-to-day oversight and operations for the registry. During the year ended december 31, 2020, the registry remitted payments totaling $56,605, to aftd for services rendered. As of december 31, 2020, accounts payable to aftd was $1,222. Aftd contributed $150,000 to the registry during the year ended december 31, 2020 and accounts receivable from aftd was $2,530 as of december 31, 2020. Susan dickinson is the chief executive officer of aftd and was appointed secretary of the registry in october 2020. Ms. Dickinson served as a member of the dissolved management committee and is chief executive officer of aftd, a co-founder with a 50% interest in the registry. The association for frontotemporal degeneration llc managing member, 50% interest, co-founder: (continued) penny dacks is the senior scientific initiatives director of aftd and was appointed president of the registry in october 2020. Christine stevens is the chief financial officer of aftd and was appointed chief financial officer of the registry in october 2020.”

“The ftd registry is governed by a limited liability company agreement which was amended and restated as of september 10, 2020 ("llc agreement") which defines the roles and responsibilities of the members and management of the registry. From inception through september 9, 2020 the llc agreement stipulated that the registry's day to day activities were to be managed by a management committee consisting of appointees of bluefield, aftd, and rainwater. The llc agreement executed in september 2020 appointed aftd as the managing member with responsibilities for oversight of all the registry's day to day activities.”

“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.”

“Each member delegates voting rights to one appointed representative. Susan dickinson has voting power for aftd and rodney pearlman has voting power for bluefield.”

“Form 990 is prepared by an outside tax professional. The form is then reviewed by all members of the organization's voting body. 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 the managing member authorizes the final form 990 which is then e-filed with the internal revenue service.”

“Members of the governing body 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 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.”

“Key employee salary is based upon comparable data and is approved by the members.”

“All of the organization's governing documents, financial statements and other legal filings are maintained in a secure environment and held available for inspection by tax authorities and the general public. Tax returns are posted annually to www.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 king of prussia, pa and can be accessed digitally from its website.”