When it comes to advocacy, AFTD uses a variety of channels to be a voice for the community, fortaler 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.

Siden 2012 har AFTD-medarbejdere og frivillige deltaget i NAPA-rådets møder og givet input fra perspektivet af dem, der er berørt af FTD. Møderne afholdes hvert kvartal i Washington, DC og er åbne for offentligheden. Igennem årene har flere frivillige rakt hånden op og givet kommentarer.

Middle Atlantic Regional Coordinator Volunteer Sarah Sozansky Beil [over] 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.

"Oplevelsen var ekstremt givende," fortsatte Beil. "Jeg følte, at jeg gjorde en forskel. Det er vores opgave at fortælle vores historier og sikre, at medlemmer af Kongressen og andre embedsmænd hører os. De kan ikke vide, hvor ødelæggende sygdommen er, medmindre vi taler op og taler for os selv."

Hvis du er interesseret i at melde dig frivilligt til at komme med kommentarer til et NAPA-rådsmøde, bedes du kontakte AFTD Program Manager Matt Sharp på msharp@theaftd.org.