Communities & Support

Organizations, podcasts, books, online groups, and the people who get it.

Organizations

AFTDLargest FTD organization. HelpLine: 866-507-7222. Support groups, conferences, research updates, and community resources. Cure MAPT FTDConnects families carrying MAPT mutations. 66 families across 12 countries. Peer support and research collaboration. CureGRNCommunity for families with GRN mutations. Family support and research participation. FTD Disorders RegistryConnects families with researchers conducting FTD studies and clinical trials. CurePSPFor PSP and CBD families. Conferences, respite grants, and community support. Brain Support NetworkCaregiver support groups and guidance on brain donation for research. FTD TalkBlogs, news, fact sheets, and resources for people living at risk of FTD. Rare Dementia SupportUK-based organization open to families worldwide. Specialized support for rare dementias.

Podcasts

Remember MeReal FTD family stories hosted by Maria Kent Beers and Rachael Martinez. Powerful, raw, and honest conversations. Losing My Mind — Kris Bowring on Shining BrightlyKris Bowring shares his personal FTD diagnosis and journey. Dementia MattersWisconsin Alzheimer’s Research Center. Includes FTD-specific episodes and expert interviews.

Books

What If It’s Not Alzheimer’s? — Gary & Lisa Radin (2022)The most complete guide for FTD caregivers. Practical, compassionate, grounded in family experience. When Love Meets Dementia — Ada AnbarPersonal story paired with practical advice for caregivers. Activities for the Family Caregiver — Frontal Temporal DementiaMeaningful activities to share with someone living with FTD. The Vanishing Family — Robert Kolker (2026)Follows an extended MAPT family journey. From the author of Hidden Valley Road.

Online communities

AFTD Support Groups DirectoryAFTD’s full directory of support groups — including private Facebook groups for families and caregivers. AFTD Young Adults GroupSupport for adult children of people with FTD. Request access by email: youngadults@theaftd.org FTD Info and SupportPublic Facebook group for information sharing and peer support. FTD Support ForumOnline discussion board for FTD families and caregivers.

Videos

AFTD YouTube ChannelEducational videos, personal stories from families, and conference recordings. 60 Minutes: The Cruelest Disease You’ve Never Heard Of (2019)Four family stories that bring FTD into sharp focus.