Flicker of Hope Foundation Ltd
Also known as:
Flicker of Hope Foundation
The Flicker of Hope Foundation Ltd (FOH) aims to raise much needed funds to support research into and awareness of NF. FOH contributes funds raised to support researchers in their quest to find positive treatments and solutions to improve the quality of life for those impacted by NF. FOH through its fund raising efforts has helped to raise awareness in the community of NF. FOH has made great progress in achieving its aims over the past five years. FoH has raised over $3,000,000 in this period to support the following research projects into NF: >TiNT trial a trial of trametinib in children and adolescents with NF1 to treat plexiform neurofibromas and optic pathway gliomas. This research is being conducted by the Murdoch Children s Research Institute. >ctDNA NF1 project a project to explore the feasibility of early detection of Malignant Peripheral Nerve Sheath Tumours (MPNSTs) using a blood test. Partnering in this project are The Royal Children s Hospital, The Royal Melbourne Hospital and Peter MacCallum Cancer Centre. >Blood Pressure Monitoring Joint research project between The Royal Children s Hospital and Murdoch Children s Research Institute for blood pressure monitoring of children and adolescents with NF. >FOH initiative, collaborating with The Florey Institute of Neuroscience and Mental Health to conduct world leading, ground breaking research into autism, cognitive and behavioural issues in people with NF1. >Researching for an NF cure Associate Professor Aaron Schindeler is heading up a new research project aiming to achieve a CURE for NF. The project is being led by a team of researchers from The Children s Hospital at Westmead, Children s Medical Research Institute and The Australian National University. This is an exciting research project for the NF community. >A pioneering NF2 medical research project Dr Jim Whittle from The Walter and Eliza Hall Institute is establishing a registry of information of Australian patients with NF2 vestibular schwannomas (or acoustic neuromas) and other tumours. This registry will provide a framework to conduct clinical trials and identify new treatments, including evaluating the use of Bevacizumab in Australian patients with acoustic neuromas. >Reproductive decision making Research led by RNSH NF Team aimed at supporting reproductive decision making for people with NF. FOH continues to explore opportunities to work with researchers to identify positive treatments and solution to help improve the quality of life for those impacted by NF.