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Living with FTD

Daily life can be a challenge for people living with frontotemporal degeneration (FTD). There are resources available to help you and your family cope. The following will help you learn to manage symptoms, handle day-to-day issues, plan for the future, and more.

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. Its website offers resources for living with FTD:

CurePSP

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

  • A list of books and personal stories that share what is like to live with progressive supranuclear palsy (PSP), corticobasal degeneration (CBD).
  • An Estate Planning Guide (PDF) that includes step-by-step instructions to help you create and manage an estate plan.
  • The CurePSPTV YouTube channel that offers webinars on topics such as "How to Prepare for Your Appointments," "The Benefits of Staying Active," "Building a Support Network," and more.

Weill Institute for Neurosciences

The University of California, San Francisco's Weill Institute for Neurosciences is a medical center dedicated to the diagnosis and care of people with degenerative brain diseases. Its website offers:

FTD Disorders Registry

The FTD Disorders Registry has published articles on living with FTD, such as:

 

** 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.