Advocacy Action Center

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NY Senate Bill 7874

Senator Michelle Hinchey (41st district) has introduced Senate Bill 7874 to create an FTD Registry at the Dept. of Health to record all cases of FTD diagnosed by physicians and other healthcare professionals in the state.  We need more accurate data on the number of FTD cases to better understand the impact of the disease and provide optimal care and support. Senate bill 7874 would establish the first state based FTD registry in the U.S. and provide an example for other states to follow. Please contact your State Senator today and ask their support of S7874.

EMAIL YOUR SENATORS TODAY AND TELL THEM TO SUPPORT NY SENATE BILL 7874

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AFTD staff, Board and volunteers meet with Senator Michelle Hinchey in Albany to celebrate the NY State FTD Awareness Resolution. L-R: Matt Sharp, Susan Dickinson, NY State Senator Michelle Hinchey, Nancy Cummings, Kathy Mele, Ret. Lt General Michael Basla
AFTD staff, Board and volunteers meet with Senator Michelle Hinchey in Albany to celebrate the NY State FTD Awareness Resolution. L-R: Matt Sharp, Susan Dickinson, NY State Senator Michelle Hinchey, Nancy Cummings, Kathy Mele, Ret. Lt General Michael Basla

NAPA Reauthorization Act

The National Alzheimer’s Project Act (NAPA) is scheduled to sunset, or expire, in 2025. The National Alzheimer’s Project Reauthorization Act (H.R. 619 / S. 133) would extend NAPA for another ten years until 2035 and enable the momentum and progress we’ve seen over the last decade to continue. With the first clinical trials for FTD currently underway, it is imperative that the National Alzheimer’s Project continues until there is better care and treatment for FTD and all types of dementia included in NAPA. Please help maintain the momentum - contact your elected officials today and urge them to advance the NAPA Reauthorization Act in both the House and Senate.

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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. 

Why advocate? 

45 - 64 AGE RANGE

Although age of onset has ranged from 21 to 80, the majority of FTD cases occur in the 45 to 64 age range

3.6 YEARS

On average, it currently takes 3.6 years to get an accurate diagnosis.

$120,000 EACH YEAR

Overall, families dealing with FTD face an economic burden of around $120,000 each year – roughly twice the economic burden of Alzheimer’s

2 OUT OF 3

Two out of three FTD caregivers reported a notable decline in their own health, and more than half said that they had incurred increased personal health care costs

Become an AFTD Advocate! 

You don’t need to be an expert in policy to become an advocate – just your voice and a commitment to making a difference. By adding your voice to our efforts to inform legislators and policymakers about FTD, you can help influence policy and legislation related to medical research, caregiving, and dementia care and services that impact the FTD community.

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State Resolution Toolkit

Looking to raise FTD awareness in your state? A Resolution is a great way to start! A resolution is a non-legal declaration designating a period of time to commemorate an event or cause. Securing one 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! This 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.

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