Overview

Frontotemporal dementia is a family of neurodegenerative conditions that cause changes in behavior, mood, executive function, language, memory, and motor function. Based on brain pathology, FTD could account for as many as 10-20 percent of all dementia cases. The disease is underdiagnosed, and a true global prevalence estimate is hindered by a general lack of awareness and the complex nature of its detection. The hallmark trait of FTD is a progressive deterioration of the brain’s frontal and temporal lobes, but specific biomarkers or treatments for FTD have not been developed.

FTD tends to affect people earlier in life than other forms of dementia and is thought to be the most common form of dementia in people under the age of 60, with the average age of onset between ages 45 and 65. Although not fatal, FTD symptoms progress to the point where patients need full-time care. The average life expectancy is about 7.5 years after symptom onset. There are no definitive diagnostic tools, no disease modifying therapies, and most patients do not receive distinct care for FTD.

With these challenges top-of-mind, Milken Institute Science Philanthropy Accelerator for Research and Collaboration (SPARC) is working to bring more attention and strategic funding into the FTD field to change the experience and trajectory for people experiencing this disease.  As part of this initiative and in partnership with the Kissick Family Foundation, SPARC is leading a new effort to infuse research dollars into the ecosystem to drive accelerated discovery.

Kissick Family Foundation FTD Grant Program

The first-ever cycle of funding for the grant program awarded $3 million in total funding to 13 researchers from around the world whose work aims to increase scientific understanding of FTD.

Frontotemporal Dementia: A Giving Smarter Guide

The Frontotemporal Dementia (FTD) Giving Smarter Guide outlines key areas of investment needed across the FTD research and care ecosystem to drive scientific progress for patients.

Frontotemporal Dementia
Program Resources