Since 2014, Children’s Tumor Foundation (CTF) and the Neurofibromatosis Therapeutic Acceleration Program (NTAP) have worked with Sage Bionetworks to support open science and collaboration in Neurofibromatosis (NF) and Schwannomatosis as part of the NF Open Science Initiative (NF-OSI). The NF-OSI is an open effort to build a collaborative scientific community focusing on finding treatments with various forms of Neurofibromatosis by sharing data and analysis results with the members of the broader community. The NF-OSI provides a platform, the NF Data Portal, by which anyone in the scientific research community can contribute or download NF-related datasets and analyses and is currently growing with support from other funding agencies.
Sage also works directly with CTF to assist in their Synodos collaborative projects. Synodos is a first-of-its-kind neurofibromatosis research collaboration dedicated to defeating a variety of forms of neurofibromatosis. To date there are four Synodos efforts funded by Children’s Tumor Foundation (CTF) and supported by Sage. The Synodos model brings together a multidisciplinary team of scientists from world-class labs at academic and medical centers of excellence, who have pledged to work closely together – sharing information, datasets, results and more – at every step in research development, with the goal of speeding up the drug discovery process.
NTAP works Sage on numerous fronts to accelerate the pace of drug discovery in Neurofibromatosis 1, a genetic pre-cancer syndrome that causes the growth of neurofibromas throughout affected patients. Specifically Sage works together with NTAP investigators to ensure that data from their research are uploaded to the NF Data Portal and properly indexed and released after a fixed embargo period.
The Gilbert Family Foundation is a private nonprofit foundation founded by philanthropists Dan and Jennifer Gilbert to address their two priorities and passions: accelerating a cure for neurofibromatosis type 1 (NF1) and transforming the city of Detroit, Michigan. The Foundation has embarked on two bold, high-risk, high-reward NF1 research initiatives: (1) the Gene Therapy Initiative (GTI) to develop curative therapies that address the underlying genetic abnormalities in NF1 patients, and (2) the Vision Restoration Initiative (VRI), inspired by their son’s loss of vision from NF1 and with a goal of advancing vision restoration therapies.