Advocacy Action Center
Help Increase Awareness of FTD Today!
Looking to raise FTD awareness in your state? State Resolutions and Proclamations are a great way to get started! A resolution is a non-legal declaration designating a period of time to commemorate an event or cause. A proclamation is an official public statement that may not require a legislative vote. Securing either or both in your state would help increase awareness of FTD, foster working relationships with your local politicians, and build the groundwork for shaping policies that will increase funding and improve care.
You can help make this happen! The Resolution Toolkit will tell you how to advocate for your legislators to commemorate September 22-29, 2024 as FTD Awareness Week in your state. In this kit you will find: Information on Resolutions, Steps to Secure a Resolution, A Sample Outreach Email, and Sample Resolution Text.
The Proclamation Toolkit will help you secure one in your state, city or town to recognize FTD Awareness Week. This kit includes information about Proclamations, Steps to Obtain a Proclamation, Sample Emails and Text.
Pursuing a resolution or a proclamation is a great way to increase awareness and get started advocating for FTD. The first step for either one is to contact AFTD at advocacy@theaftd.org to let us know your plans.
Our Current Campaigns
NAPA Reauthorization and Alzheimer’s Bypass Budget
Last month the US Senate passed two critical bills for continuing the progress in diagnosing and treating dementia - the National Alzheimer’s Project Reauthorization Act (S. 133 / H.R. 619) and the Alzheimer’s Accountability and Investment Act (S. 134 / H.R. 620).
Update September 24, 2024: Both the NAPA Reauthorization Act and the Alzheimer's Accountability and Investment Act (AAIA) passed unanimously in Congress on Tuesday, September 24. AFTD would like to extend our gratitude to all who contacted their elected officials about these two critical pieces of legislation.
Thanks to your efforts, and the efforts of all dementia advocates, Alzheimer’s disease and related dementias like FTD will remain a top priority for our nation for the next 10 years. Use the link below to send a thank you letter to your Senators and Representatives:
Older Americans Act (OAA)
Current funding for OAA programs and services expires in FY24 and must be reauthorized by the current Congress.
The OAA provides funding for programs and services for older adults, but some, like the National Family Caregiver Support Program (NFCSP) and the Alzheimer’s Disease Programs Initiative (ADPI), serve adult family members or other informal caregivers aged 18 and older who provide care to individuals of any age with Alzheimer’s disease and related disorders.
Continued funding for OAA programs is critical, and funding for the NFCSP and the ADPI — which have direct benefits individuals and families living with FTD — must not be cut.
Healthy Brains Act (HBA)
On August 1, U.S. Representatives Jennifer Wexton (D, Va.) and Gus Bilirakis (R, Fla.) introduced the Harmonizing Environmental Analyses and Launching Therapeutic Hubs to Yield Bolstered Research And Innovation in Neurological Science Act, otherwise known as the HEALTHY BRAINS Act (HBA).
The HBA would create the Collaborative Centers for Neurodegenerative Disease Environmental Research at the National Institutes of Health (NIH), where researchers would focus on the environmental and occupational risk factors for neurodegenerative diseases like PSP, CBD, ALS, and Parkinson’s disease.
Passage of the HEALTHY BRAINS Act (HBA) could lead to important advances in our understanding of the causes of these diseases and how to prevent them.
What is an advocate?
An advocate engages and educates elected officials on key issues. Whatever your political affiliation, our advocates are just like you – people who care about FTD, who want their elected officials to do more to address the impact of this disease, and who are ready to make a difference.
We advocate for legislative, policy, and regulatory changes to improve quality of care and quality of life for people with FTD and their families through:
- improving dementia care and services; ensuring they are inclusive of FTD disorders
- increasing access to dementia diagnosis and community-based care
- expanding funding for medical research and public programs serving people with dementia and their caregivers
Now is the time to join us in persuading our policymakers to take direct action on these crucial matters.
Comments from AFTD on Policy
August 30, 2023: AFTD provides input to CMS on GUIDE Model for dementia care
August 15, 2023: AFTD submits comments to ACL on updated regulations of the Older Americans Act advocating for expanded access for people under 60 with FTD
August 11, 2023: AFTD Ambassadors Offer Insights at July NAPA Meeting
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