Press

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.

673 participants responded to the FTD Disorders Registry’s May Quick Question on their diagnosis journey.

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).

548 participants responded to the FTD Disorders Registry’s April Quick Question on accessing respite care.

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.

576 people answered the FTD Disorders Registry’s March Quick Question where we asked about what types of FTD-related research content respondents would find most valuable. The information will be used to help develop new content for our Registry dashboard, website, and printed materials.

629 people answered the FTD Disorders Registry’s February Quick Question asking how often they feel socially isolated due to their or their loved one’s symptoms from a frontotemporal degeneration (FTD) disorder.