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About FTD

Frontotemporal degeneration (FTD) is a group of rare conditions that can affect a person’s behavior and ability to move or speak. Together, they are the most common cause of dementia in people under the age of 60.

The symptoms of FTD steadily, and sometimes rapidly, become worse overtime. There are currently no treatments to cure or slow FTD. However, lifestyle changes, certain drugs, and other tools may improve daily life. Most people with FTD live about 7 to 13 years after the start of symptoms.

Looking for more information about FTD? The following patient-friendly resources are a great place to start.

Association For Frontotemporal DeGeneration

The Association for Frontotemporal Degeneration (AFTD) is an advocacy organization with a mission to improve the lives of people affected by FTD. The AFTD website offers the following resources:

  • Syndrome-specific factsheets for behavioral variant FTD (bvFTD), the primary progressive aphasias (PPA), progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), and FTD with motor neuron disease (also called FTD-ALS).
  • A "Recommended Reading/Viewing" page with a list of relevant educational webinars, books, DVDs, and more.
  • A glossary of medical terms related to FTD.

CurePSP

CurePSP is an advocacy organization working to improve awareness, education, and care for prime of life neurodegenerative diseases. Its website has many resources, including:

FTD Talk

FTD Talk aims to serve as a home for the FTD community, providing up-to-date information and support for affected people throughout their journey. It offers:

  • FTD factsheets developed in collaboration with healthcare providers, FTD-diagnosed people, and caregivers.

National Aphasia Association

National Aphasia Association (NAA) is a nonprofit organization that promotes public awareness and understanding of aphasia. It also offers support for affected people and their caregivers. Visit the NAA's website to access:

  • Information pages on primary progressive aphasia (PPA) in both English and Spanish.

National Institutes of Health

The National Institute of Neurological Disorders and Stroke (NINDS) and the National Institute of Aging (NIA) conduct and fund research on FTD. They offer:

 

** Any resources that the FTD Disorders Registry (FTDDR) provides are for informational purposes only. FTDDR is not responsible for and does not endorse the materials at the linked sites. Advice regarding your personal medical management should be obtained through consultation with a healthcare provider who is familiar with your medical history.