Advocacy organizations support people living with frontotemporal degeneration (FTD). Many offer ways for you to connect with others facing the same challenges. They also provide education materials, financial aid, and other helpful resources. Find the support you need through the organizations below.
For general support resources for caregivers, please visit our CAREGIVING page.
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 support resources, including:
- A Help Line (firstname.lastname@example.org or toll-free at 866-507-7222) for information on FTD, support resources, opportunities to get involved with AFTD, and research.
- Annual education conferences, live chat webinars, and other events.
- Support groups and other resources for FTD-diagnosed people and their caregivers and children.
CurePSP is an advocacy organization working to improve awareness, education, and care for prime of life neurodegenerative diseases. It offers:
- Family conferences across the country.
- A variety of in-person and online support groups for people diagnosed with progressive supranuclear palsy (PSP) or corticobasal degeneration (CBD) and their families.
- Financial grants for respite services.
The Brain Support Network is a nonprofit organization dedicated to the well-being of those challenged by neurodegenerative disorders. Its website offers resources, including:
- A caregiver support group meeting in Northern California.
- Email lists for people with progressive supranuclear palsy (PSP) or corticobasal degeneration (CBD) and their caregivers.
- Help with the brain donation process.
** 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.