On May 1, 2017, an international consortium of clinicians and scientists from multiple disciplines met in Toronto, Canada to officially launch the Synodos for Schwannomatosis project. Led by Dr. Gelareh Zadeh from University of Toronto and Dr. Laura Papi from University of Florence, Italy, the project aims to perform an extensive molecular analysis of schwannomatosis tumor samples to identify new therapeutic targets, and advance the understanding and management of the disease, with special focus on pain.
Mark your calendar: the 2018 NF Conference will be taking place November 2-6, 2018 at the Maison de la Chimie in Paris, France. As details become available, they will be posted at www.ctf.org/nfconference.
Neurofibromatosis Therapeutic Acceleration Program (NTAP) is launching a new research program focused on understanding the pathogenesis of cutaneous neurofibromas. NTAP is a philanthropic research entity based at Johns Hopkins University dedicated to the discovery of therapeutics for the peripheral nerve tumors that afflict people with neurofibromatosis type 1 (NF1). Cutaneous neurofibromas represent a major unmet need for NF1 patients. This research program sets the blueprint for improving therapeutics for these tumors by encouraging research proposals that improve the Understanding of Cutaneous Neurofibromas.
The Children's Tumor Foundation's Young Investigator Award program received a boost this month when the Boston Children's Hospital Neurofibromatosis Program decided to partner with CTF to help fund the 2017 Young Investigator Awards. Dr. David Miller of Boston Children's Hospital directs the research initiative focused on MPNST, a malignant neurofibroma occurring in a small minority of NF1 patients that typically has a poor treatment outcome.
Chronic illness in youth poses numerous challenges to the parents who care for them. Across various pediatric populations, psychological functioning in parents is compromised by the stress of having a child with special healthcare needs. This pilot study, Feasibility and Preliminary Efficacy of an Internet Support Group for Parents of a Child with Neurofibromatosis Type 1, investigated the feasibility and preliminary efficacy of an Internet Support Group (ISG) for parents of children with NF1.