Earlier this year, actor Bruce Willis and his family announced his diagnosis of frontotemporal dementia (FTD), a neurodegenerative disorder that includes cognitive, neurological, and psychiatric symptoms. The family’s statement echoed the experience of many others who face FTD, lamenting the length of time to get to the correct diagnosis, the lack of awareness and research, and the helplessness of watching their loved one slip away.

At the onset of neurodegenerative diseases, patients exhibit memory loss, unusual behavior, and personality changes. Frustration accompanies those symptoms as one loses a sense of self, awareness, and identity. Families are left to speculate and pinpoint what feels amiss without any biological confirmation. Even after careful testing and discussions with doctors, there is little families and caretakers can do. Brain diseases are unlike those of any other organ—they impact the core of who a patient is. 

As a neurodegenerative disease, FTD leads to a combination of changes in behavior, mood, executive function, language, and motor function that progress over time. Eventually, most patients require full-time care, with the average life expectancy after diagnosis being 7.5 years. Though not everyone living with FTD will experience the same symptoms, caretaking quickly becomes a priority for most spouses and families, which takes a significant financial and emotional toll. Understanding how to treat and care for people with FTD and other dementias will become especially vital as many countries face aging populations.

Approximately 20,000-30,000 people in the US live with FTD. Experts suggest that the actual prevalence is higher; the disease is likely underdiagnosed and can be misdiagnosed as another form of dementia or psychiatric illness. In most cases, arriving at a diagnosis requires over a year of medical appointments and referrals. Despite its prevalence, FTD suffers from a lack of awareness and inadequate funding.

Currently, US federal funding for FTD lags behind other neurodegenerative disorders like Alzheimer’s Disease and Parkinson's Disease. There are currently no FDA-approved disease-modifying treatments for FTD, although some of the behavioral, motor, and language symptoms can be alleviated with medications developed for other diseases. This indicates that a general increase in the visibility of the disease, in combination with investments in research and support for patients and their families, is long overdue. 

About 40% of FTD patients have a known genetic cause. The other ~60% have a “sporadic” form—and this is where research is especially needed.

As it has with so many other diseases, philanthropy is stepping up to provide strategic research funding for sporadic FTD, aiming for outsized impact with a long-term vision. A new grant program sponsored by the Kissick Family Foundation, with strategic guidance from the Milken Institute Science Philanthropy Accelerator for Research and Collaboration, will fund neuroscientists, biochemists, clinicians, and other scientists seeking to illuminate previously unknown patterns and characteristics of sporadic FTD. With this announcement, the Kissick Family Foundation hopes to enrich the overall FTD research ecosystem. Some hope that discoveries in FTD will even provide key findings that will reverberate throughout neurodegenerative disease research. This is the ultimate goal: to topple the mysteries that enshroud scientific understanding of brain disease.

The Milken Institute’s recently published Frontotemporal Dementia: A Giving Smarter Guide details the scientific motivations and philanthropic recommendations for how to effectively support FTD research. For researchers interested in applying to the Kissick Family Foundation’s grant program in sporadic FTD, please submit a letter of intent before December 12, 2023.