AFTD has unveiled a robust and ambitious advocacy agenda for 2025, emphasizing the urgent need to better support families facing FTD while pushing for deeper public investments into FTD research and drug development.

“This year, AFTD is poised to have a greater impact than ever before in advancing federal and state policies that provide real, concrete help to our community,” said AFTD Director of Advocacy and Volunteer Engagement Meghan Buzby, MBA. “Our advocacy team will work throughout 2025 to ensure that families facing FTD are well represented in key policy discussions with lawmakers, regulators, and similar high-level decision makers.”

The policy priorities on the 2025 AFTD advocacy agenda – the organization’s first – include:

• Supporting the search for AFTD biomarkers and more sophisticated diagnostic tools, so that families facing FTD can more quickly find comprehensive medical care and the support they need.
• Encouraging the development of therapies and medicines that will mitigate FTD symptoms and slow – or even prevent – disease progression.
• Pushing for FTD to be specifically included in all dementia-focused policies and models of care.
• Advocating for the collection of data on FTD’s prevalence and incidence to better understand the FTD community and to help identify potential environmental risk factors.
• Promoting tax-relief programs and paid family leave policies to alleviate the significant financial burden that families with FTD face.
• Introducing resolutions formally recognizing FTD Awareness Week, held each year at the end of September, to increase FTD’s visibility in individual states and throughout the U.S.

A full list of AFTD’s 2025 policy positions can be found on AFTD’s website.

“Taken together, this advocacy agenda envisions a landscape that prioritizes both innovative FTD research and more equitable access to effective FTD care,” Buzby said. To hasten the accomplishment of our goals, AFTD has partnered with the Washington, DC lobbying form Innovation Policy Solutions, which has specialized in furthering healthcare and medical-research policy for over 20 years.

Next Tuesday at 4 p.m. ET, experts from Innovation Policy Solutions will join Buzby for a special AFTD Advocacy Webinar, “Paving the Path Forward: Advancing AFTD’s Public Policy Priorities.” If you want to learn more about how AFTD will achieve our advocacy agenda – and how you can help us make a difference for families living with FTD – we encourage you to register for this free event. And if you cannot make it to the live webinar, the recording will be available to view at AFTD’s webinar archive.