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FTD remains too little known and too often misdiagnosed, leaving people and families affected to face years of uncertainty and isolation. As awareness grows among medical and care professionals, community partners, policymakers, and the public, we can bring forward earlier and more accurate diagnosis, better options for care and support, and more funding to advance research.
As a member of World FTD United, AFTD encouraged people to take one daily action to raise awareness and provide support during World FTD Awareness Week in 2023. Additionally, Emma Heming Willis spoke with leaders in the FTD community – including neurologists, social workers, care providers, and advocates – who addressed multiple aspects of diagnosis and the care partner journey. Find each interview on Mrs. Willis’s YouTube channel: youtube.com/@EmmaHeming-Willis
Following the February 2024 announcement by Wendy Williams’ family about her FTD diagnosis, AFTD CEO Susan Dickinson provided insight into the disease for an article in The Daily Beast, and a post on AFTD’s website highlighted resources to assist our community in managing this emotional news.
AFTD CEO Susan Dickinson and Emma Heming Willis joined Hoda Kotb on TODAY in September 2023 to kick off World FTD Awareness Week.
AFTD in the News
To mark Brain Awareness Week (March 11-17, 2024) AFTD launched the #EndDementiaStigma campaign to shine a light on how stigma affects timely, accurate diagnosis and access to care. Nearly 5,000 people engaged in the campaign, sharing their stories and FTD facts.
AFTD's Growing Audience
A July 2023 New York Times Magazine article by Robert Kolker profiled a family that has lived with the threat of inheriting genetic FTD for generations. AFTD staff contributed information on the disease’s symptoms and recent advances in research.
Illustration by Najeebah Al-Ghadban via New York Times Magazine
The ALTER program is one of many peer nonprofit organizations AFTD partners with to expand our programs and raise awareness in under-resourced communities. In April 2024, AFTD attended the inaugural ALTER Dementia Summit. Convening faith leaders, advocates, researchers, and healthcare professionals, the summit focused on strategies for increasing dementia care and improving health outcomes in African American and Black communities.
Board member Rita Choula, MA (second from left), and AFTD staff at the ALTER Dementia Summit.
In July 2023, AFTD staff and Board members attended the inaugural performance of UnRavelled at the San Francisco Conservatory of Music. The play examines how Canadian scientist Anne Adams’ creativity flourished following her diagnosis with primary progressive aphasia, compared to French composer Maurice Ravel and his journey with a similar diagnosis. AFTD and the Global Brain Health Institute co-sponsored the event to elevate the stories of people living with FTD.
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