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One of the more exciting developments in neurofibromatosis (NF) research today is the success of the MEK inhibitor clinical trial, in which over 70% of participants are seeing reductions of 20-55% in the size of their inoperable plexiform neurofibromas. The research surrounding this particular drug, selumetinib, is being prepared for submission to the FDA, and indicators are that it could become the first-ever approved drug for NF.
Your ongoing support has allowed us to take huge steps forward in 2018 in the fight against NF. Your efforts and contributions have been instrumental in advancing neurofibromatosis research, providing hope for the millions worldwide who live with NF, and bringing us ever closer to our shared goal of ending NF forever.
On October 4-5, 2018 the Children’s Tumor Foundation hosted the second Neurofibromatosis Animal Model Workshop in Palm Springs, California. More than 20 animal models were presented at the United States and Canadian Academy of Pathology (USCAP) learning center.
Major Research Funders Join Together to Advance Research into Genetic Disorder
New York/Baltimore/Seattle – The Children’s Tumor Foundation (CTF), together with the Neurofibromatosis Therapeutic Acceleration Program (NTAP) and Sage Bionetworks (Sage), has announced the first-ever open data portal for scientific research results in the field of neurofibromatosis (NF). The NF Data Portal marks the major first milestone in all three organizations’ commitment to the development of the larger NF Open Science Initiative (NF-OSI), which draws experts from across research disciplines and disease areas in order to develop treatments for NF, a genetic disorder which affects 2.5 million people worldwide (1 in 3,000 births), and currently has no cure or effective treatment options.
The Children’s Tumor Foundation (CTF) is proud to announce today the formation of the new European-based medical research NGO, called Children’s Tumor Foundation Europe. The United States based organization, with headquarters in New York City, was founded in 1978 and is the largest nongovernmental funder and catalyzer of neurofibromatosis (NF) research in the world, with its mission to drive research, expand knowledge, and advance care for the NF community. CTF Europe launches today as a partner organization to CTF in the United States.