Flicker of Hope welcomes input and suggestions for research about NF. Applications for our twice yearly funding rounds are invited from all organisations.
The Flicker of Hope Foundation has raised over $1,000,000 in just three years. 100%* of this amount will be used to fund essential research into NF.
Flicker of Hope is currently funding the following projects:
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.
A Flicker of Hope 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.
Stem Cell Research Project – being 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.
*Flicker of Hope operates on a no cost basis. There are no staff, administrative or overhead costs deducted from donations received. Please see our FAQ for further information.
Neurofibromatosis (NF) is a genetic disorder that most people have never heard of. There are three types of NF: NF1, NF2 and Schwannomatosis.
It is estimated that 1 in 2,500 people have NF1 – affecting approximately 10,000 Australians and 2,500,00 people worldwide.
NF2 and Schwannomatosis are much rarer conditions. Estimates are that NF2 affects approximately one person per 33,000 people worldwide. Schwannomatosis is the least common and most recently identified form of neurofibromatosis, with estimates of occurrence ranging from one in 40,000 people to one in 1.7 million people.
Approximately 50% of NF sufferers inherit the disorder from their parents. Others show no family history of NF, meaning it has occurred spontaneously at the time of conception. Anyone suffering from Neurofibromatosis has a one-in-two chance of passing the condition onto their own children.
Neurofibromatosis causes tumours to grow on nerve endings throughout the body. It can affect major organs and lead to a variety of serious and debilitating health issues including cafe au lait spots, blindness, bone abnormalities, disfigurement, chronic pain, amputation, cancer, epilepsy, learning difficulties and autism.
Knowledge of NF is incredibly limited – research is needed to learn more about the condition and explore effective treatment options.
100%* of funds raised by Flicker of Hope will help shine a light on NF, and will directly fund meaningful research into NF.
With your help we can continue to raise awareness of NF, bring hope to those living with NF, and brighten the future for all affected by NF.
Together we can help fund research, enabling better understanding to help find an effective treatment for NF.
Thanks to the generous support of individuals, businesses, community and school groups, Flicker of Hope has raised over $600,000 in two years.
100% of this amount has been donated to fund essential research into NF.
*Flicker of Hope operates on a no cost basis. There are no staff, administrative or overhead costs. Please see our FAQ for further information,
The Flicker of Hope Foundation has been inspired by Zoe – who was diagnosed with NF at 4 months of age.
Zoe loves to dream big … and she dreams of a bright future for all those affected by NF.
In 2018 Zoe and her family established The Flicker of Hope Foundation to raise much needed funds to support researchers in their quest to find positive treatments and improve the quality of life for those impacted by NF.
Flicker of Hope welcomes input and suggestions for research about NF1. Applications for our twice yearly funding rounds in April and October are invited from all organisations.
Please email your research proposal to firstname.lastname@example.org. Proposals should be no more than 400 words in plain language.