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Neurofibromatosis

Neurofibromatosis is a genetic disorder that can cause tumours, cancer, epilepsy, disfigurement, blindness and learning difficulties including autism. One in 2,500 people are affected.

There is no cure.

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Thank you to all our generous supporters. Every dollar you commit brings a flicker of hope to all those impacted by Neurofibromatosis.

In five years, we’ve raised over

$3,000,000

100%* of this amount will be used to fund essential research into NF.

*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.

Flicker of Hope is currently funding the following projects

  • Early Diagnosis of NF in Infants

    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.
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    80

  • Elizabeth’s Legacy – Deciphering the Molecular Mosaic of NF2

    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.
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    500

  • 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.
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    350

  • 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.
    500
    500

  • NF2 Registry

    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.
    150
    150

  • Stem Cell Research Project

    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.
    150
    150

  • Researching autism, cognitive and behavioural issues in people 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.
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    600

  • 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.
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    4

  • 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.
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    150

  • Hope for families impacted by NF

    Associate Professor Mimi Berman is focused on supporting reproductive decision making and pregnancy outcomes when NF1 and NF2 are present.
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    300
    Find out more

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.

*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.

What is Neurofibromatosis?

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 2,500,000 people worldwide.

NF2 and Schwannomatosis are much rarer conditions. Estimates are that NF2 affects approximately 1 in 33,000 people worldwide. Schwannomatosis is the least common and most recently identified form of neurofibromatosis, with estimates of occurrence ranging from 1 in 40,000 people to 1 in 1.7 million people.

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.”

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.

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About us

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.

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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 $3,000,000 in just over five 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 deducted from donations received. Please see our FAQ for further information.

Call for research funding applications

Flicker of Hope is accepting applications for our next round of funding for NF Medical Research. Applications 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.

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