Ten Years of NAPA: Ensuring That Families Facing FTD Have a Seat at the Table
The National Plan to Address Alzheimer’s Disease marked its 10th anniversary in 2022, and AFTD has consistently worked to ensure that the needs of families with FTD have been included throughout the plan’s decade of existence.
In early 2011, President Obama signed the National Alzheimer’s Project Act, or NAPA, into law, authorizing the U.S. Department of Health and Human Services (HHS) to develop the plan, which was released the following year.
According to the HHS website, the plan is designed to “prevent future cases of Alzheimer’s and related dementias” and “to better meet the needs of the millions of American families currently facing” dementia.
In a commemorative blog post, Richard J. Hodes, M.D., director of the National Institute on Aging, reflected on NAPA’s progress at the 10-year mark, noting specifically the work done to advance our understanding of the genetics of dementia, to expand research into biomarkers, and to increase participation in clinical trials for dementia therapeutics.
By participating in quarterly meetings of the NAPA Advisory Council, AFTD has been a consistent voice for families with FTD – for example, by encouraging members of our community to submit public comments and by ensuring that the phrase “Alzheimer’s and related dementias” includes FTD.
In 2019, AFTD volunteer Katie Brandt was named a co-chair of the NAPA Advisory Council, a “major step forward in representation for FTD on the national stage,” as AFTD noted at the time. AFTD had formally nominated Brandt to become a council member in 2017.
AFTD is a regular participant in the various summits convened under the auspices of NAPA. AFTD staff have been part of planning bodies and workgroups for the Alzheimer’s Disease-Related Dementias Summits, held every three years since 2013, and have also spoken at the 2017 and 2020 National Research Summits on Care, Services, and Supports for Persons with Dementia and Their Caregivers.
NAPA is set to expire in 2025. But a bill that would extend it to 2035 has been introduced in the U.S. Senate. AFTD anticipates working with lawmakers not only to make sure that bill is enacted, but to continue clarifying that not all dementia is Alzheimer’s, and that families living with FTD deserve a seat at the table.
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