News & Events
FTD, Genetic Risk, and Stigma: Lessons from Ray Howell’s Case
Update: This article’s perspective raised many questions and sparked conversation within our community—discussions that will continue to advance the science and deepen our understanding of the causes and effects of FTD, moving us closer to a future free of FTD. A letter to the editor by statistician Daniel Brickman, titled “Perilous Predictions,” was published on…
Guest Feature: Reduce Stigma for Those on the FTD Journey
AFTD Ambassador, former care partner and mental health advocate Liz Zadnik shares her insights on how the FTD community can enhance the quality and access of appropriate care for all. Part of my care partner experience was advocating for my mom within health and memory care spaces, as misdiagnoses are a common part of the…
The Rare Disease Hiding Behind Misdiagnosis
The BBC featured an article on their website about progressive supranuclear palsy (PSP), a rare disease and FTD disorder commonly associated with movement, but also a commonly misdiagnosed one. Gillian Manitara and Clive Hughes are among the 60% of people who initially received a misdiagnosis for PSP early on their journey. Furthermore, for one in…
AFTD Responds to an OMB Proposed Rule on Federal Financial Assistance
The White House Office of Management and Budget (OMB) has proposed sweeping changes to the Uniform Guidance for Federal Financial Assistance, the rules that govern how federal grants are awarded and managed. According to OMB, the proposal is intended to increase oversight and align federal funding decisions with Administration priorities. However, many researchers, universities, patient advocacy organizations,…
Community Connection: Join a Community United in Hope with Walk for FTD
Walk for FTD is more than an event – its a powerful movement fueled by community, connection, and purpose. When you join, you become part of a united effort grounded in hope and determination for a future free from FTD. By working together with friends, family, and neighbors, you can support AFTD’s mission and raise awareness…
The Harder Path: One Student’s Mission to Honor Her Father and Advocate for FTD Globally
Lehigh University’s The Brown and White published an article featuring AFTD volunteer Liz Matthews. When Matthews was a young child, her father—a resilient man who overcame a difficult childhood to become a successful dentist, musician, and amateur pilot—suddenly began to change. Not long after, he was diagnosed with frontotemporal degeneration (FTD) and passed away when…
FTD and Young Age of Onset Can Lengthen Time to Dementia Diagnosis, Study Finds
A systematic review published last year in the International Journal of Geriatric Psychiatry by University College London (UCL) researchers explores the factors influencing the time to diagnosis faced by people living with FTD and Alzheimer’s disease. While the factors were varied, the study highlighted that younger age at onset and FTD were associated with a…
Dear HelpLine: Navigating Financial Resources in FTD
Dear HelpLine, My husband was recently diagnosed with FTD, and we are now in a very difficult financial situation. He is no longer able to work and was the primary earner. How do we learn about financial resources, health insurance, and disability benefits? An FTD diagnosis can significantly impact financial stability, often when families are…