Posts by Mary Krause
How Registry Data Is Advancing FTD Research—and Why It Matters
The FTD Disorders Registry is a powerful resource for scientists studying FTD disorders. Learn more about how your de-identified data is used.
Read MoreFTD: The Other Side of ALS
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…
Read MoreTwo Drugs Selected for New PSP Platform Trial
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).
Read MoreRegistry Data in Focus: Three Posters at AAN 2025
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.
Read MoreVirtual Panel: Power in Numbers
Virtual Breakout Panel | Friday, May 3rd | 3:45 PM MT
Power in Numbers: How the FTD Disorders Registry Drives Groundbreaking Research
Research Highlight: Experiences with Comorbid FTD and ALS
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…
Read MoreResearch Highlight: Exploring Families’ Interest in Understanding Genetic FTD
Kim Jenny, Manager of Genetic Initiatives for the Association for Frontotemporal Degeneration (AFTD), presented the results as a poster at the International Society for Frontotemporal Dementias (ISFTD)’s annual conference.
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