When it comes to advocacy, AFTD uses a variety of channels to be a voice for the community, sostenendo for research and appropriate, affordable services. Volunteers play a key role in this mission area by partnering with AFTD and sharing their stories at the National Alzheimer’s Project Act (NAPA) Advisory Council meetings. These courageous volunteers present comments to ensure that FTD remains a part of the dementia conversation on a federal level.

NAPA became law in 2011. It authorizes the Department of Health and Human Services to develop and maintain a National Plan for Alzheimer’s disease and related dementias, with input from a public-private council on Alzheimer’s Research, Care and Services. The NAPA Advisory Council recommends ways to expand, coordinate and condense programs in order to improve the health outcomes of people with dementia.

Dal 2012, il personale ei volontari dell'AFTD partecipano alle riunioni del Consiglio NAPA e forniscono input dal punto di vista delle persone colpite dall'FTD. Gli incontri si tengono trimestralmente a Washington, DC e sono aperti al pubblico. Nel corso degli anni, diversi volontari hanno alzato la mano e presentato commenti.

Middle Atlantic Regional Coordinator Volunteer Sarah Sozansky Beil [Sopra] shared why she provided comments to the Council last summer. “I felt that having been directly impacted, I was obligated to tell my story so that FTD is recognized by lawmakers and other community members — so they don’t forget the devastating effects it can have on families,” she said. “It was important for me to show the members that people affected by FTD can be younger, and that they may even have young kids.

"L'esperienza è stata estremamente gratificante", ha continuato Beil. “Mi sentivo come se stessi facendo la differenza. È nostro compito raccontare le nostre storie e assicurarci che i membri del Congresso e altri funzionari governativi ci ascoltino. Non possono sapere quanto sia devastante la malattia a meno che non parliamo e difendiamo noi stessi ".

Se sei interessato a fare volontariato per fare commenti a una riunione del Consiglio NAPA, contatta il responsabile del programma AFTD Matt Sharp all'indirizzo msharp@theaftd.org.