Alzheimer’s Disease Toolkit

The toolkit below is intended to support community advocates who wish to get involved with Alzheimer’s disease advocacy efforts at the federal level. Resources included in the toolkit are intended to be shared with elected officials and their staff and may include facts and statistics that are new or upsetting to some community members. To learn more about the co-occurrence of Down syndrome and Alzheimer’s disease, please visit our webpage here. If you would like to connect directly with a member of our health team about the information found in these resources, please email health@ndss.org.

Overview

The Down syndrome community lacks explicit and robust inclusion in federal initiatives around Alzheimer’s disease. Furthermore, individuals with Down syndrome and Alzheimer’s disease face barriers to accessing appropriate diagnosis, treatment, care, and caregiving supports. NDSS believes that all individuals with Down syndrome deserve access to care throughout their lifetime that assures them of their human rights and welcomes them into a more inclusive society. In line with this vision, NDSS champions several priorities related to Alzheimer’s disease at the federal level.

For more information, please contact our team at policy@ndss.org. To learn more about NDSS grassroots advocacy initiatives, please visit our DS-Ambassador page here.

NAPA Reauthorization

Overview – National Alzheimer’s Project Act (NAPA) Reauthorization

At the federal level, NDSS champions the National Alzheimer’s Project Act (NAPA) Reauthorization Act (H.R. 619/S. 133) which would improve the coordination of federal planning, programs, and other efforts to address Alzheimer’s disease. The bill, as amended by the Senate Health, Education, Labor, and Pensions (HELP) Committee, includes two key provisions that more explicitly and robustly include the Down syndrome community.

Advocates can use the action alert here and the resources below to advocate for the NAPA Reauthorization Act.

Advocacy Template Emails

Social media advocacy

NAPA Council

Overview – The National Alzheimer’s Project Act (NAPA) Council

The original National Alzheimer’s Project Act (NAPA), passed in 2011, established the NAPA council which convenes quarterly to coordinate federal planning and initiatives around Alzheimer’s disease. A representative of NDSS and/or the Down syndrome community has given public comment at every quarterly meeting since the end of 2021. Browse the transcripts of these comments below.

Diagnostic Tools

Overview – Diagnostic Tools

Objective diagnostic criterion based on clinical pathology is the cornerstone of an effective response to Alzheimer’s disease. Browse resources relevant to this topic below.

To keep up to date with advocacy opportunities related to access to diagnostic tools, make sure you are signed up for our action alerts here.

NIA-AA Proposed Clinical Guidelines (September 2023)

Medical Access

Overview – Access to Treatment, Care, and Caregiver Support

NDSS continues to advocate to appropriate departments and agencies to increase access to treatments and care for individuals with Down syndrome and Alzheimer's disease and support for caregivers caring for loved ones with Down syndrome and Alzheimer’s disease. Browse resources relevant to these topics below.

To keep up to date with advocacy opportunities related to access to treatment, care, and caregiver support, make sure you are signed up for our action alerts here.

Clinical Trial Participation Study (March 2021)
National Down Syndrome Organizations Response to CMS Coverage for New Class of Alzheimer’s Treatments (February 2022)
CMS Decision on Coverage (April 2022)
NDSS Response to Beta Amyloid PET Coverage (July 2022)
NDSS Statement for the Record in House Hearing on Innovation (July 2023)
NDSS Follow-Up Response to Beta Amyloid PET Coverage (August 2023)

For more information on these federal initiatives, please contact Anna Fedewa, Manager of Federal Government Relations at afedewa@ndss.org.

Additional Legislation We Support:

Click below to read NDSS letters of support for additional pieces of legislation that concern Alzheimer’s disease. Take action on these priorities here.