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

Desde 2012, el personal y los voluntarios de la AFTD han asistido a las reuniones del Consejo de la NAPA y han brindado opiniones desde la perspectiva de los afectados por la FTD. Las reuniones se llevan a cabo trimestralmente en Washington, DC y están abiertas al público. A lo largo de los años, varios voluntarios levantaron la mano y presentaron comentarios.

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

"La experiencia fue extremadamente gratificante", continuó Beil. “Sentí que estaba haciendo una diferencia. Nuestro trabajo es contar nuestras historias y asegurarnos de que los miembros del Congreso y otros funcionarios gubernamentales nos escuchen. No pueden saber cuán devastadora es la enfermedad a menos que hablemos y defendamos a nosotros mismos”.

Si está interesado en ofrecerse como voluntario para hacer comentarios en una reunión del Consejo de NAPA, comuníquese con el Gerente del Programa AFTD, Matt Sharp, en msharp@theaftd.org.