Overview

Frontotemporal dementia (FTD) describes brain conditions characterized by progressive degeneration of the brain’s frontal and temporal lobes. Worldwide, an estimated 1.5 million people are thought to be living with FTD. However, the disease is widely believed to be underdiagnosed and undercounted, and little is known about FTD diagnosis rates across distinct racial and ethnic groups.

Diagnosing FTD is challenging and requires a combination of methods, including physical examination, behavioral assessments, brain imaging, genetic testing, and family medical history. Like most other neurodegenerative diseases, a definitive diagnosis of FTD can only be made upon death after autopsy. 

FTD tends to affect people earlier in life than other forms of dementia, which can lead to misdiagnosed psychiatric conditions and inadequate treatments. FTD 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.

 

About the Kissick Family Foundation FTD Grant Program 

The Kissick Family Foundation partnered with MI Philanthropy’s Science and Health team in 2022 to analyze and understand the state of the FTD research ecosystem and identify where philanthropic investments could be deployed to overcome barriers to scientific progress. 

Using the data and insights from this analysis, which are published in Frontotemporal Dementia, a Giving Smarter Guide, the Kissick Family Foundation aims to make investments in research that accelerate basic discoveries, expedite novel treatment options, and improve patient outcomes for people living with FTD. 

The first-ever request for funding proposals of the grant program, announced in November 2023, will make up to $2.5 million in total funding and be made available to researchers from around the world whose work aims to increase scientific understanding of FTD. 

Please view the RFP for more details. The submissions for this cycle are now closed and applications are under review. Awardees for this funding cycle should expect to be notified in May 2024.
 

CSP Frontotemporal Dementia Web Timeline

Frontotemporal Dementia
Program Resources

Science Advisory Board

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Li Gan

Kissick Family Foundation FTD Science Advisory Board Member
Director, Helen and Robert Appel Alzheimer’s Disease Research Institute, Weill Cornell Medical College
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Stephen J. Haggarty

Kissick Family Foundation FTD Science Advisory Board Member
Associate Professor, Harvard Medical School; Associate in Neuroscience, Massachusetts General Hospital
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Bruce Miller

Kissick Family Foundation FTD Science Advisory Board Member
A.W. and Mary Margaret Clausen Distinguished Professor in Neurology; Director, Memory and Aging Center; Founding Director, Global Brain Health Institute, UCSF
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Rosa Rademakers

Kissick Family Foundation FTD Science Advisory Board Member
Scientific Director, VIB-UA Center for Molecular Neurology; Professor, Department of Biomedical Sciences, University of Antwerp
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Erik Roberson

Kissick Family Foundation FTD Science Advisory Board Member
Professor, University of Alabama at Birmingham
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Rita Sattler

Kissick Family Foundation FTD Science Advisory Board Member
Professor, Department of Translational Neuroscience, Barrow Neurological Institute