Flicker of Hope welcomes input and suggestions for research about NF1. Applications for our twice yearly funding rounds are invited from all organisations.
The Flicker of Hope Foundation has raised over $600,000 in just two 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.
*Flicker of Hope operates on a no cost basis. There are no staff, administrative or overhead costs. 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.
Shine a Flicker of Hope this Christmas and help us decorate our Christmas Tree! Your $10 donation to Flicker of Hope will sponsor a bauble for our tree. Your $20 donation to Flicker of Hope will sponsor a candle for our tree. Donations can be made in multiples of $10 up to […]READ MORE
Doctors from The Royal Children’s Hospital in Melbourne recently approached Flicker of Hope regarding a pilot research project for blood pressure monitoring of children and adolescents with neurofibromatosis. Young children and adolescents with NF1 are susceptible to high blood pressure, which can lead to some significant adult diseases […]READ MORE
Flicker of Hope is beyond excited to share some incredible groundbreaking news with you! Today, the Federal Minister for Health, Greg Hunt, announced that the Australian Government will invest over $760,000 to partially fund research into Neurofibromatosis type 1 in paediatric patients. This is the first time the Australian Government has funded research into […]READ MORE