Neurofibromatosis is a genetic disorder that causes tumours, blindness, disfigurement, cancer, epilepsy and learning difficulties including autism.

 

One in 2500 people are affected.

 

There is no cure.

Neurofibromatosis (NF) is a genetic disorder that most people have never heard of.

 

NF 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.

 

There are very few treatments for NF and there is no cure.

 

It is estimated that 1 in 2,500 people have NF1 – affecting approximately 10,000 Australians and 2,500,00 people worldwide.

 

Flicker of Hope are shining a light on NF to raise funds for vital medical research.

 

The Flicker of Hope Foundation has been established to raise much needed funds for research into Neurofibromatosis.

 

Flicker of Hope welcomes input and suggestions for research about NF. Applications for our twice yearly funding rounds are invited from all organisations.

Every dollar you commit will bring a flicker of hope.

The Flicker of Hope Foundation has raised over $1,300,000 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.

 

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 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 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. 

 

You can find out more details about these projects here

 

*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.

Will you help Flicker of Hope shine a light on NF? All donations are tax deductible and 100%* of your donation is directed towards research.

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WHAT IS NEUROFIBROMATOSIS?

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.

 

The Flicker of Hope Foundation has been established to raise much needed funds to ensure NF research can continue.

One of the biggest things that Neurofibromatosis can lead to is fear. The pathway for each person is both different and unpredictable. Fear of what may happen is significant.

HOW CAN YOU HELP?

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.

 

Please join us on this journey – a journey that may be life changing for those impacted by 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,

Are you a dreamer?

Help us to bring a flicker of hope and brighten the future for those living with NF.

Together, we can make a difference.

DONATE NOW

ABOUT

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.

Zoe-About-Web

APPLICATION FOR RESEARCH FUNDING

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 info@flickerofhope.org.au. Proposals should be no more than 400 words in plain language.

LATEST NEWS

KICKING BUTT FOR NF RESEARCH! APRIL 12, 2022

Free family friendly event featuring AFL legends!  Free Kids Footy Clinic at 4pm – all welcome – just turn up! Tuesday April 12, 2022 at 4pm – Port Melbourne Football Club

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NEW FLICKER OF HOPE RESEARCH PROJECT

            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.

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