About Frontotemporal Dementia (FTD)
FTD refers to a group of clinical neurodegeneration syndromes that involve progressive loss of behavioral, language, and/or motor functions. These syndromes are linked to underlying frontotemporal lobar degeneration (FTLD) pathology. Increasingly, research on FTD relies on high-quality, carefully annotated postmortem FTLD brain tissue for primary discovery research and to validate findings from model systems.
About Frontotemporal Dementia Tissue Distribution Network (FTDN)
Once the vision for these four biobanks is fully realized, it will dramatically increase meaningful use of brain tissue in FTD research.
Dr. Amy Rommel, Scientific Program Director
Rainwater Charitable Foundation
The FTDN seeks to enhance research involving post-mortem tissue, donated for research by patients with FTD. The FTDN was conceived in response to the need for more streamlined access to high-quality tissue from patients who have undergone extensive clinical and neuropathological characterization. With an initial $1 million from the Rainwater Charitable Foundation and $250,000 from CurePSP, a collaborative network of brain banks has launched the first phase of their three-phase plan to enhance brain bank bioinformatics infrastructure and create centralized and streamlined access to brain tissue samples that are essential for FTD research.
Dr. Amy Rommel, Scientific Program Director for the Rainwater Charitable Foundation, said, “Once the vision for the FTDN 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.”
Mission Statement
The FTDN seeks to facilitate the discovery of novel treatments for FTD by enhancing operational capacity across a federated network of brain banks. This network will provide tissues for research through a streamlined, centrally managed tissue access portal.
Institutions
Four brain banks have come together through the FTDN:
- Boston University School of Medicine, led by Dr. Ann McKee;
- Icahn School of Medicine at Mount Sinai, led by Dr. John Crary;
- Mayo Clinic, Jacksonville, Florida, led by Dr. Dennis Dickson; and the
- University of California, San Francisco, led by Drs. William Seeley and Lea Grinberg.