Advocacy
Individual voices are powerful, and advocacy — whether personal or collective — is vital to AFTD’s work. By raising awareness and educating elected officials, we move closer to timely diagnosis, effective treatments, and an end to dementia stigma.
In January 2025, we announced our first-ever policy agenda. Developed with input from our Board, volunteers, and professional advocates, the agenda establishes four priorities to shape our engagement with legislators and policymakers to:
AFTD Advocacy
To learn more about AFTD’s advocacy priorities, visit theaftd.org/get-involved/advocate
Persons with FTD Advisory Council
The Council enables people living with FTD to connect with peers and ensure the lived experience informs AFTD’s work.
Several Council members contribute to Help & Hope: The Lived Experience, acknowledging the challenges a diagnosis can bring. Topics include navigating relationships, suicidal ideation following a diagnosis, living with hyperorality or food fixation, and anxiety.
Four members of the Council shared their insights on overcoming challenges of living with FTD during a moderated session at the 2025 Education Conference. (Deb Jobe and Seth Stern, MD)
Chris Tann speaking at a conference breakout session, Navigating Our Own Path as Persons Diagnosed.
Through our Advocacy Action Center, AFTD empowers volunteers and advocates nationwide to make their voices heard on the federal and state policies that shape FTD research, care, and caregiver support. Each year, staff provide toolkits and templates to help volunteers secure state and local proclamations and resolutions recognizing FTD Awareness Week.
In April 2025, New York State Senator Michelle Hinchey reintroduced S598B, a bill to create the first state-wide FTD registry. On October 17, 2025, it was signed into law, marking a historic milestone — the first-ever FTD-specific registry in the nation to collect and track FTD diagnoses in New York State.
This map reflects advocates’ progress in securing proclamations and resolutions to recognize FTD Awareness Week (as of 9/30/2025).
This July 2024 webinar guided participants on working with lawmakers, proclamations vs. resolutions, and building relationships to advance FTD policy.
Following the release of our policy agenda, this webinar outlined how to raise awareness with lawmakers to improve research funding and caregiver resources.
