The scientific understanding of FTD has increased more in the past 10 years than in the previous 100. At AFTD’s 2023 Education Conference in May, Dr. Bruce Miller of the University of California, San Francisco predicted that “we will see effective therapies for the different forms of FTD” within the next decade, and just this month, the FDA cleared the way for clinical trials to begin on an innovative gene therapy that could halt FTD’s progression. One of the forces driving this recent momentum is the support and public attention that the National Alzheimer’s Project Act (NAPA) and the Alzheimer’s Accountability Act have brought to dementia research at the National Institutes of Health (NIH).

NAPA was signed into law in 2012, authorizing the Department of Health & Human Services (HHS) to create a National Plan to Address Alzheimer’s Disease. The National Plan uses the word “Alzheimer’s” to mean Alzheimer’s disease and related dementias and defines the “related dementias” to include FTD, Lewy body dementia, vascular contributions to cognitive impairment and dementia, and mixed dementias. The abbreviation AD/ADRD has become the default shorthand to refer to all the conditions covered by the National Plan. The plan sets forth six goals, along with the strategies by which the National Alzheimer’s Project will achieve them. The goals are to:

NAPA also authorized the creation of a public-private advisory council tasked with making annual recommendations to update and revise the National Plan. Since 2012, AFTD staff and volunteers have been attending the quarterly meetings of this advisory council – known formally as the Advisory Council on Alzheimer’s Research, Care and Services – to provide our own input and ensure that families with FTD are represented.

In 2015, Congress enacted the Alzheimer’s Accountability Act, which requires NIH to submit an annual Alzheimer’s research budget proposal directly to Congress, bypassing the usual budget procedures. This Alzheimer’s Bypass Budget allows NIH to set the funding levels it will need to complete the research recommendations and priorities established through the National Plan.

Over the last six years, funding for Alzheimer’s disease and related dementias research at NIH has increased by $3.1 billion. Prior to the creation of the Alzheimer’s Bypass Budget, the total funding for FTD research at NIH was an estimated $33 million. Since then, approximately $340 million has been requested for research on the “related dementias.”

NIH released its FY25 budget proposal in July, requesting an additional $318 million. If passed, this would bring the total amount allotted for AD/ADRD research at NIH to more than four billion dollars.

We must keep this progress going! The Alzheimer’s Accountability Act and the National Alzheimer’s Project Act are scheduled to sunset, or expire, in 2025. Bills to reauthorize the National Alzheimer’s Project and extend the Bypass Budget for another ten years have been introduced into Congress. House bills (H.R. 619 and 620) were introduced in January by New Jersey Representatives Paul Tonko and Chris Smith and are currently in the Subcommittee on Health. Senate bills (S. 133 and 134) are currently on the Senate calendar and could be acted on before it adjourns in December. These bills must be passed before they expire, or else all the momentum gained over the last decade will be lost.

With the first clinical trials for FTD currently underway, it is imperative that NIH not lose vital congressional support. Look for more information and opportunities to contact your U.S. senators on AFTD’s Advocacy Action Center soon and help maintain progress toward effective treatments for FTD.

Visit AFTD’s Advocacy Action Center