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

Sinds 2012 wonen AFTD-medewerkers en vrijwilligers de vergaderingen van de NAPA-raad bij en leveren ze input vanuit het perspectief van degenen die door FTD zijn getroffen. De vergaderingen worden elk kwartaal gehouden in Washington, DC en zijn openbaar. In de loop der jaren hebben verschillende vrijwilligers hun hand opgestoken en commentaar geleverd.

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

"De ervaring was buitengewoon lonend", vervolgde Beil. “Ik had het gevoel dat ik een verschil maakte. Het is onze taak om onze verhalen te vertellen en ervoor te zorgen dat leden van het Congres en andere overheidsfunctionarissen ons horen. Ze kunnen niet weten hoe verwoestend de ziekte is, tenzij we ons uitspreken en voor onszelf opkomen.”

Als u geïnteresseerd bent in vrijwilligerswerk om opmerkingen te maken tijdens een NAPA Council-vergadering, neem dan contact op met AFTD-programmamanager Matt Sharp op msharp@theaftd.org.