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.

Since 2012, AFTD staff and volunteers have been attending NAPA Council meetings and providing input from the perspective of those affected by FTD. The meetings are held quarterly in Washington, DC and are open to the public. Over the years, several volunteers have raised their hand and presented comments.

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

“The experience was extremely rewarding,” Beil continued. “I felt like I was making a difference. It is our job to tell our stories and ensure that members of Congress and other government officials hear us. They cannot know how devastating the disease is unless we speak up and advocate for ourselves.”

If you are interested in volunteering to make comments at a NAPA Council meeting, please contact AFTD Program Manager Matt Sharp at msharp@theaftd.org.