The Ftd Disorders Registry LLC

“The association for frontotemporal degeneration is the llc's 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 june 30, 2025, the registry incurred $138,504 related to services rendered. Aftd contributed $287,374 to the registry during the year ended june 30, 2025. Susan dickinson is the chief executive officer of aftd and as such will retain ultimate responsibility for management of the llc and for ensuring that the aftd board of directors is informed on a regular basis.”

“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 laura mitic 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.”

“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.”

“The organization's payroll is processed and paid by a related organization, the association for frontotemporal degeneration ("aftd"). All employment tax returns and w-2's are filed by the aftd and reimbursed by the organization.”

“Other professional fees: program service expenses 10,000. Management and general expenses 165,786. Fundraising expenses 0. Total expenses 175,786.”