Posts by Mary Krause

The FTD Disorders Registry has launched a new Researcher Portal to accelerate study recruitment.

Learn how the FTD Disorders Registry helps accelerate research by connecting willing participants with studies focused on FTD disorders.

Understanding the genetic component of FTD can help families make informed health decisions and contribute to critical research that is paving the way toward earlier detection and better treatments.

The FTD Disorders Registry joined FTD community advocates for a behind-the-scenes tour of the Penn FTD Center,

The FTD Disorders Registry is a powerful resource for scientists studying FTD disorders. Learn more about how your de-identified data is used.

When people hear “ALS,” they often think of Lou Gehrig, ice bucket challenges, and the devastating loss of motor function that characterizes Amyotrophic Lateral Sclerosis. But there is another side to ALS that is lesser known, equally devastating, and deeply connected: Frontotemporal Degeneration (FTD).  FTD and ALS are closely related disorders that are part of…

The Association for Frontotemporal Degeneration (AFTD) has shared that two drugs have been selected for evaluation in a new platform trial aimed at accelerating the development of treatments for progressive supranuclear palsy (PSP).

Data from the FTD Disorders Registry was presented in three posters at the April 2025 Annual Meeting of the American Academy of Neurology (AAN) in San Diego, CA.

The FTD Insights Survey is the largest community survey of people with lived experience of FTD disorders. This survey queried on topics that included the diagnostic journey, disease symptoms, and their impacts on daily life. Shana Dodge, PhD, AFTD’s Director of Research Engagement, used data from the FTD Insights Survey in a poster session at…