Over US$30m in funding allocated to rare brain disease research


Researchers studying frontotemporal degeneration disease, a leading cause of early onset dementia, will receive more than US$30m over the next five years in grants from the National Institutes of Health (NIH). The funding will be used to further scientific collaboration and investigate new treatments in the quest to find a cure for frontotemporal degeneration.

Frontotemporal degeneration received a total of four grants, each independently peer reviewed, that will allow for building reliable clinical networks to diagnose and treat frontotemporal degeneration and related variants; recruiting frontotemporal degeneration -causing gene mutation carriers for study; and study of a specific genetic mutation that is the most common cause of both inherited frontotemporal degeneration and inherited amyotrophic lateral sclerosis.

“The frontotemporal degeneration community is extremely gratified to be the recipient of this unprecedented level of funding that we believe is the result of the tremendous momentum underway in frontotemporal degeneration science,” says Susan Dickinson, executive director of The Association for Frontotemporal Degeneration. “What started with frontotemporal degeneration’s recent inclusion in national research priorities to cure Alzheimer’s disease and other dementias by 2025, has now catapulted into what promises to be significant progress in learning about this debilitating neurodegenerative disease.”

Three of the grants, totalling US$5.9 million per year, are being funded by the NIH’s National Institute of Neurological Disorders and Stroke (NINDS), National Institute on Aging (NIA) and the National Center for Advancing Translational Sciences (NCATS). The three projects will enable scientists to collaborate on research approaches for frontotemporal degeneration, with the goal of diagnosing and treating patients more effectively.

“The projects aim to advance our understanding of frontotemporal degeneration by improving diagnosis, identifying preventive strategies and providing new insights into the genetics underlying this complex disorder,” says Margaret Sutherland, program director at NINDS.

A fourth grant is part of US$29m earmarked for the Rare Diseases Clinical Research Network, a network of 22 consortia dedicated to furthering translational research and investigating new treatments for patients with rare diseases. The major focus of this grant is to study amyotrophic lateral sclerosis, including the disease variant of amyotrophic lateral sclerosis with frontotemporal degeneration.