CurePSP and the Rainwater Charitable Foundation partner to support a collaborative biobanking platform for frontotemporal dementia research

The Rainwater Charitable Foundation and CurePSP today announced their partnership to support an initiative to establish a federated network of brain banks that will be enabled to allow increased access to tissue for researchers as they work toward bringing effective treatments to patients with primary tauopathies like frontotemporal dementia (FTD) and progressive supranuclear palsy (PSP). 

(PRNewsfoto/The Rainwater Charitable Foundation)
(PRNewsfoto/The Rainwater Charitable Foundation)

Tauopathies are neurodegenerative diseases that involve the “misfolding” of tau, a naturally occurring protein in the brain. The pathological accumulation of tau “tangles” destroys neurons, the active cells in brain function, and causes severe movement, behavioral, and cognitive decline. These diseases are currently incurable and largely untreatable.

With an initial $250,000 gift from CurePSP and $1 million from the Rainwater Charitable Foundation, the collaborative network of biobanks has been able to launch the first phase of their three-phase plan to enhance brain bank bioinformatics infrastructure and create a centralized and streamlined access to brain tissue samples that are essential to scientific research. 

CurePSP’s contribution was partially funded by the Freeman family, in memory of Eva Freeman, who suffered from PSP.

“CurePSP has long promoted brain donation through a collaboration with the Mayo Clinic and reimburses families for the cost of the procedure. CurePSP now has the opportunity to expand this program,” said CurePSP’s Vice President–Scientific Affairs Dr. Kristophe Diaz. “This initiative is not only fundamental to advancing our understanding of these complex diseases but is also a cornerstone to increasing the impact of brain donations.”

“Despite substantial efforts within the neuropathology community, there remains an unmet need for centralized, streamlined, and efficient access to high quality and well-characterized tissue samples from patients with frontotemporal dementia (FTD) spectrum disease,” said Dr. William Seeley, Professor of Neurology and Pathology at the University of California San Francisco and lead scientist driving the collaboration. “Efforts to meet this need will require the sustained engagement, expertise, and material resources of FTLD-specialized brain banks.”

Dr. Amy Rommel, Scientific Program Director for the Rainwater Charitable Foundation, said, “Once the vision for these four biobanks is fully realized, it will dramatically increase meaningful use of brain tissue in FTD research.” Todd Rainwater, Trustee of the Rainwater Charitable Foundation, added, “A clear unmet need in the field is access to data and tissue. Opening up these resources to the research community will surely get us to effective treatments for patients sooner.” 

The four biobanks that have come together for this initiative include the Ichan School of Medicine at Mount Sinai, led by Dr. John Crary; Boston University School of Medicine, led by Dr. Ann McKee; Mayo Clinic, Jacksonville, FL, led by Dr. Dennis Dickson; and the University of California San Francisco, led by Drs. William Seeley and Lea Grinberg. According to Dr. Rommel, these efforts will require additional support to continue their work to expand tissue access and address unmet needs in the field; however, this partnership represents a critical first step in launching this important initiative.

About CurePSP
CurePSP is the nonprofit advocacy organization focused on progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), and other prime of life neurodegenerative diseases, a spectrum of fatal brain disorders that often strike during a person’s most productive and rewarding years. Currently, there is no effective treatment or cure for these diseases, which affect more than 150,000 people in the U.S. alone. Since it was founded in 1990, CurePSP has funded more than 200 research studies and is the leading source of information and support for patients and their families, other caregivers, researchers and doctors, and allied healthcare professionals. CurePSP is based in New York City. Please visit for more information.

About the Rainwater Charitable Foundation’s Medical Research
The Rainwater Charitable Foundation (RCF) was created in the early 1990s by renowned private equity investor and philanthropist Richard E. Rainwater. RCF supports a range of programs in K-12 education, medical research, and other worthy causes. To deliver on its mission to accelerate the development of new diagnostics and treatments for tau-related neurodegenerative disorders, the Rainwater Charitable Foundation Medical Research team manages the Tau Consortium and the Rainwater Prize Program. With more than $100 million invested to date, the Rainwater Foundation has helped to advance eight treatments into human trials. For more information, please visit, and

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