On July 30, Sarah Sozansky Beil, an AFTD Regional Coordinator Volunteer for the Middle Atlantic region, delivered remarks before a meeting of the National Alzheimer’s Project Act (NAPA) Advisory Council. She spoke about her personal experiences with FTD — her father was diagnosed at age 58 — and urged the advisory council to consider the unique needs of persons diagnosed with FTD and their care partners, who tend to be younger compared with other forms of dementia.

Sarah’s full statement, plus a video of her remarks, can be found below.

Remarks by Sarah Sozansky Beil to the National Alzheimer’s Project Act (NAPA) Advisory Council in Washington, DC

First, I would like to thank the Advisory Council for giving me the opportunity to address them today. I am here on behalf of The Association for Frontotemporal Degeneration (also known as AFTD), as well as the FTD community as a whole.

I will start by saying that I have been directly impacted by FTD. My father was diagnosed with the disease in 2008 at the age of 58. His symptoms became noticeable when it was discovered that he had difficulty typing on a computer, putting words together, and when he began to exhibit unusual behavior. I would be remiss not to include the fact that my father was a well-known attorney with aspirations of becoming a judge. He was a brilliant man who had a passion for social issues.

My father’s battle with FTD was long and arduous, and lasted eight years before his death in 2016. I watched him decline little by little until he was a shell of a man with nothing left but the emptiness in his eyes. There is nothing more devastating than watching a person slowly lose their personality, their memory, and their ability to speak until all that remains is their physical presence.

And while this experience was devastating, I know my family is not alone in this journey. There are thousands of individuals, caregivers, and families battling FTD on a daily basis without any access to resources. As a lead volunteer for AFTD, I frequently receive phone calls from family members of individuals diagnosed with FTD who have nowhere to turn. The desperation and confusion in their voices haunts me as I struggle to offer them my knowledge or connect them to AFTD.

I am here today to ensure that you remember FTD and my father by asking that you continue to improve upon and expand the resources that are included in the National Plan. Specifically, that you take the needs of younger caregivers and patients, the financial impact of FTD, and the need for better long-term support service options into consideration when updating the National Plan. It is imperative that other individuals and families battling FTD have unrestricted access to the necessary resources that can assist them.

Thank you for your time today.