Brain Disorders
Frontotemporal Dementia
Frontotemporal dementia (FTD) is a group of neurodegenerative disorders that affect behavior, language, memory, and motor function. It accounts for 10–20 percent of dementia cases but remains underdiagnosed due to limited awareness and diagnostic complexity. FTD typically affects people between ages 45 and 65, making it the most common form of dementia in those under 60.
The average life expectancy is only about 7.5 years after symptom onset, making FTD a devastating diagnosis for patients and their families. There are no definitive diagnostic tools or disease-modifying therapies, and most patients do not receive care specifically tailored to FTD.
To address these challenges, SPARC is convening leaders in neurodegeneration and partnering with funders to strategically deploy capital and accelerate progress. In partnership with the Kissick Family Foundation and others, SPARC is infusing new research dollars and advancing coordinated philanthropic strategies to drive discovery and move toward cures.
Our Work
Partnership with the Kissick Family Foundation
SPARC has partnered with the Kissick Family Foundation​ since 2022 to advance research and awareness for FTD. This partnership includes a grant program to fund research into FTD through the Kissick Family Foundation FTD Funding Program, as well as strategic and operational support for other initiatives to advance FTD.
Partnership with the Bluefield Project
SPARC has had a multi-year partnership with the Bluefield Project​ to support the organization’s strategic activities and accelerate the movement of genetics-informed treatments into clinical care for FTD. The resulting case study describes this partnership.
Partnership with Rainwater Charitable Foundation
Since 2017, SPARC has partnered with the ​Rainwater Charitable Foundation​ (RCF) to advance research on tau-related neurodegenerative diseases. This collaboration began with a systems-level analysis that led to the Targeting Tau: A Giving Smarter Guide. It helped shape the creation of the Tau Consortium and continues through SPARC’s strategic support for RCF’s ongoing efforts to accelerate progress in primary tauopathy research.
Frontotemporal Dementia: A Giving Smarter Guide
In 2022, SPARC assessed the funding landscape and the current state of FTD research. The resulting Giving Smarter Guide reflects these findings and outlines opportunities for other strategic investments in this space.
