CurePSP, a nonprofit advocacy organization for prime of life neurodegenerative diseases, and the Rainwater Charitable Foundation of Fort Worth announced March 28 what the two organizations called a "landmark partnership in the Prime of Life Brain Initiative, an unprecedented research effort to find treatments and cures for neurodegenerative disease."
RCF, through its Tau Consortium, provides approximately $13 million in research funding annually. CurePSP has funded some 180 research studies since it was founded in 1990. Joint projects will be recommended by an advisory board of eminent researchers in the field.
The Rainwater Charitable Foundation created the Tau Consortium in 2009, shortly after renowned investor and philanthropist Richard Rainwater was diagnosed with progressive supranuclear palsy (PSP).
The Tau Consortium commissions world-class basic research, drug discovery, and related efforts to accelerate the development of new treatments for PSP, Alzheimer's disease, and other neurodegenerative disorders involving the tau protein, the organizations said in a news release.
Research will focus on a spectrum of brain diseases called frontotemporal disorders that are characterized by the chain reaction "misfolding" of a protein named tau that aggregates into toxic "tangles" that destroy neurons, the cells responsible for brain function, the release said.
These diseases are termed "prime of life" diseases because, unlike Alzheimer's disease, the most common form of neurodegeneration, they most often onset during middle age or earlier, when people may have family responsibilities, are in their prime earning years and enjoy active lives, according to the release.
Half of all neurodegeneration under the age of 65 involves these frontotemporal disorders, according to the National Institutes of Health (NIH).
Alzheimer's disease alone afflicts 5.7 million people in the U.S. with an annual cost of care of $277 billion, according to the Alzheimer's Association.
A recent study published by the American Academy of Neurology and supported by the Association for Frontotemporal Degeneration (AFTD) shows that the economic burden of a patient with a frontotemporal disorder like progressive supranuclear palsy (PSP) is $120,000 a year, double that of an Alzheimer's patient.
Because these patients often do not qualify for Medicare and have limited private insurance coverage, this cost can fall directly on the family, the news release said.
PSP affects about 20,000 patients in the U.S. and is a major target of research.
Many scientists believe that finding a treatment for PSP or another related frontotemporal disorder would be an important steppingstone to solving the more common forms of neurodegeneration that involve the tau protein, including Alzheimer's disease.
Pharmaceutical companies are now conducting clinical trials on PSP patients with the goal of eventually developing a drug to treat Alzheimer's. Another disease that involves the tau protein is chronic traumatic encephalopathy (CTE), which has been associated with repetitive head trauma in contact sports like football.
"We are excited that CurePSP will help us to support the world's best researchers as they hunt for a solution to these terrible diseases," Patrick Brannelly, program director of the Tau Consortium, said in the release.
"We have long had a productive working relationship with RCF and this combination of complementary capabilities and resources will accelerate neurodegeneration research," said David Kemp, president of CurePSP.