Advocacia AFTD

The U.S. Congress plays a key role in determining federal funding for biomedical research on FTD by appropriating funds to agencies like the National Institutes of Health (NIH). Legislators also pass laws that affect access to health care, disability benefits, caregiving support, and insurance coverage for people with FTD. There are many opportunities to shape legislators’ awareness of an issue and influence the policymaking process, such as educating a member’s office on an issue, informing the discussion during congressional hearings, and urging your elected officials to vote a particular way during a committee markup or floor consideration of a piece of legislation. By engaging with members of Congress, we help ensure that FTD is a priority on Capitol Hill.

The executive branch implements and enforces the laws passed by Congress, directly impacting how policies affect people with FTD and their loved ones. Federal agencies such as the NIH, the Centers for Medicare & Medicaid Services (CMS), and the Administration for Community Living (ACL) develop programs and administer grants that fund research, care, and services. Engaging with federal officials within the executive branch helps make sure that FTD remains visible in national health strategies and programs.

State and local governments make decisions that have a significant impact on daily life for people living with FTD. States administer Medicaid, operate aging and disability programs, and fund caregiver support and respite services. Local agencies help provide community-based resources, transportation, and housing that can help people with FTD remain safe and supported. Advocating at the state and local level ensures that policies and services are inclusive of the unique needs of the FTD community.