When it comes to advocacy, AFTD uses a variety of channels to be a voice for the community, advocating 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, a equipe e os voluntários do AFTD têm participado das reuniões do Conselho do NAPA e fornecido contribuições a partir da perspectiva das pessoas afetadas pelo FTD. As reuniões são realizadas trimestralmente em Washington, DC e são abertas ao público. Ao longo dos anos, vários voluntários levantaram a mão e apresentaram comentários.

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

“A experiência foi extremamente gratificante”, continuou Beil. “Senti que estava fazendo a diferença. É nosso trabalho contar nossas histórias e garantir que os membros do Congresso e outros funcionários do governo nos ouçam. Eles não podem saber o quão devastadora é a doença, a menos que falemos e nos defendamos”.

Se você estiver interessado em se voluntariar para fazer comentários em uma reunião do Conselho NAPA, entre em contato com o gerente do programa AFTD, Matt Sharp, em msharp@theaftd.org.