FTD Disorders Registry Receives $100,000 Grant from CurePSP

Grant awarded through The Prime of Life Brain Initiative

CurePSP, the foundation for prime of life neurodegeneration, recently made a $100,000 grant to support the work of the FTD Disorders Registry.

The grant was awarded through the Prime of Life Brain Initiative, a joint effort by CurePSP and the Rainwater Charitable Foundation (RCF) and its Tau Consortium to fund research into neurodegenerative diseases involving tau protein pathology. The funding from CurePSP adds to more than $500,000 that RCF has granted to support the FTD Disorders Registry.

“The FTD Disorders Registry serves as a critical tool to aid investigators in their research and to assist pharmaceutical companies in recruiting subjects for their clinical trials,” stated Dr. Lawrence I. Golbe, CurePSP’s Director of Scientific Affairs. “CurePSP looks forward to further collaboration with the FTD Disorders Registry through funding and marketing.”

The Registry enrolls patients and their caregivers, family members, and friends who have been affected by disorders involving frontotemporal degeneration, which include behavioral variant frontotemporal dementia (bvFTD), progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), primary progressive aphasia (PPA), and FTD with amyotrophic lateral sclerosis (ALS).

Currently, more than 3,150 people have enrolled in the Registry. Approximately 20 percent are diagnosed persons, 40% biological family members, and 40 percent spouses/caregivers/friends.

“CurePSP’s contribution will be helpful in continuing our already successful efforts to enroll patients and the people who care for them and to make the registry even more valuable to its scientific users,” stated Registry Director Dianna Wheaton.

The Registry compiles clinical and contact information to assist researchers and pharmaceutical companies running clinical trials. It was launched to the public in 2017 as a patient-centered, self-enroll registry. It is both a Contact Registry (international) and a Research Registry (currently the U.S. and Canada).

About CurePSP

CurePSP is the nonprofit organization for prime of life neurodegenerative diseases, a spectrum of fatal brain disorders that often strike during a person's most productive and rewarding years. Since it was founded in 1990, CurePSP has funded more than 180 research studies and is a leading source of support and advocacy for patients, families, and other caregivers and education and information for doctors and allied healthcare professionals. CurePSP is based in New York City. Please visit www.curepsp.org for more information.

About the Rainwater Charitable Foundation

The Rainwater Charitable Foundation was created in the early 1990s by renowned investor and philanthropist Richard E. Rainwater. The foundation supports a range of different programs in K-12 education, medical research, and other worthy causes. In order 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 nearly $100 million invested to date, Rainwater support has helped to advance eight treatments into human trials. For more information, please visit https://tauconsortium.org/.

About The Prime of Life Brain initiative

The Prime of Life Brain Initiative was formed in 2018 to combine the resources of CurePSP and RCF to fund research on neurodegenerative diseases that are characterized by the toxic aggregation of the tau protein, which is involved in the relatively rare frontotemporal disorders as well as in Alzheimer’s disease, which afflicts some six million people in the U.S. alone. The initiative supports neurodegeneration research with the goal of finding treatments and cure.