Early diagnosis of NF is crucial for optimal disease surveillance and management. In partnership with Murdoch Children’s Research Institute, Flicker of Hope is funding a project led by Dr Gaby Dabscheck, focusing on Early Diagnosis of Neurofibromatosis in Infants. This research will focus on early diagnosis, early intervention access, including diagnostic timeframes, parental preferences, primary care identification of at risk infants by Maternal Child Health Care Nurses, and co-designed solutions for improving early diagnosis and service access for children and families affected by an NF1 diagnosis.

A flagship program with The Brain Cancer Centre, led by Dr Jim Whittle and his team of researchers from the Walter & Eliza Hall Institute, bringing together the best and brightest minds to focus on solving the puzzle created by brain and other tumours. Flicker of Hope has committed to raise $500,000 to fund this ground breaking world leading research.

Associate Professor Aaron Schindeler is heading up a new research project aiming to achieve a CURE for NF. The project is now underway with a team of researchers from The Children’s Hospital at Westmead, Children’s Medical Research Institute and The Australian National University. This is incredible news for the NF community, shining a flicker of hope for those living with NF.

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.

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.

Conducted by the Murdoch Children’s Research Institute. This world leading innovative research is another vital step to developing medications to treat learning and behavioural problems for children with NF1.

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.

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.

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.

Associate Professor Mimi Berman is focused on supporting reproductive decision making and pregnancy outcomes when NF1 and NF2 are present.