The Association for Frontotemporal Degeneration

FTD is caused by
degeneration of the frontal
and/or temporal lobes of the brain.

It's the most common form of dementia for people under 60.

What is FTD?

Learn More

Download a Diagnostic Checklist

You don't have to take
this journey alone.

AFTD offers reliable information, resources,
and support for families facing FTD.

Find Support Managing FTD Newly Diagnosed

Bruce Willis & FTD

The Willis' Unexpected Journey

Initial Family Statement

Read about Emma Heming Willis' book tour

Learn more about FTD

September 25, 2025 | 12 p.m. ET

aftd helpline WEBINAR

The Lived Experience with FTD:

The Road to an FTD Diagnosis

13 Years of Food for Thought

Host an Event

Celebrate 13 years of turning meals into moments of awareness, connection, and hope.

Join us this September 21 – October 5

Read the Host Toolkit Donate Today

Read the Full Plan

2025-2028

Paving the Path Forward:

Strategic Plan

Diagnosis and Treatment

Quality Care and Support

Advocacy and Awareness

Infrastructure and Sustainability

Since research is expanding so rapidly, AFTD is pleased to offer two ways for you to stay informed based on your level of scientific understanding.

Are you interested in staying up to date on FTD research?

Written for People on the FTD Journey Written for Researchers & Professionals

News & Events

Advancing Hope: AFTD Helps Organize C9orf72 Prevention Trial Workshop

A recent publication, Design considerations for C9orf72 disease prevention trials, arose from a two-day workshop that was led by Adam Boxer, MD, PhD, (UCSF) and Michael Benatar, MD, PhD, (University…

Dear Helpline: What Comes After an FTD Diagnosis?

When a doctor first says the words frontotemporal degeneration (FTD), everything changes. Some describe it as feeling like the ground drops out from under them — fear, grief, and endless…

Title Banner: Genetic FTD Trials Update: Approaching a Phase 3 Milestone

Partners in FTD Care: Genetic FTD Trials Update – Approaching a Phase 3 Milestone

The FTD research landscape is on the verge of major developments. For the first time, a Phase 3 trial has been completed for a potentially disease-modifying treatment for genetic FTD,…

Comedian Shares Her FTD Caregiving Journey on Podcast

Obviously there’s nothing funny about an FTD diagnosis—even for someone who makes their living finding the humor in everyday life. But Kelsey Cook, a nationally touring comedian known for her…

People at Potential Risk of Developing FTD Share Views on Effects of Predictive Biomarker Testing

People at risk, or potentially at risk, of developing FTD from a genetic mutation shared their perspectives on the potential effects the results of predictive biomarker testing would have on…

Tips & Advice: The Hidden Economic Cost of an FTD Diagnosis

World FTD Awareness Week is highlighting the financial impact of FTD today. When families receive an FTD diagnosis, they face more than the emotional upheaval of a progressive neurological condition—they…

ALLFTD2 Study Receives Notice of Award for NIH Grant for Five Years of Funding

In exciting news for the FTD research community, the ALLFTD study has received funding from the National Institutes of Health for the next phase, currently referred to as ALLFTD2. ALLFTD…

Advocacy Update: FTD Research at NIH Highlighted in FY26 LHHS Appropriations Reports

AFTD is excited to share that congressional reports for the Fiscal Year (FY) 2026 Labor, Health and Human Services, Education, and Related Agencies (LHHS) appropriations bills in the Senate and…

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