The most common genetic disorder

The Children’s Tumour Foundation of Australia (CTF) is dedicated to finding effective treatments for people living with neurofibromatosis (NF), a term for three disorders: NF1, NF2, and Schwannomatosis.

NF is a genetic disorder that affects as many as one in every 2,500 births. This makes it more common than Cystic Fibrosis, Duchenne muscular dystrophy, and Huntington’s disease.

NF causes tumours to form on the nerve cells, including the brain and spine. It is progressive, effective treatment options are limited, and there is no cure! NF tumours can grow ANYWHERE on the inside and outside of the body, the tumours can affect major organs, increase the risk of cancer and possibly leading to blindness, bone abnormalities, deafness, disfigurement and learning disabilities. It is estimated that there are more than 10,000 Australians currently living with the disorder.

NF does not discriminate between race, gender or ethnicity, and while half of all affected persons inherit the condition, new cases can arise spontaneously through a genetic mutation. NF affects each person differently. It is like living with a ticking time bomb. There is no way to predict how or when a person may be affected by NF tumours.

NF1 is the most common form of NF, and can cause a range of health issues, including but not limited to, internal and external tumours, including plexiform tumours and peripheral nerve sheath tumours, tumours of the brain and spine, optic gliomas, scoliosis, pseudoarthrosis and bone abnormaltities, as well as a higher incidence of learning difficulties, cancer, ADHD and ASD.  NF2 can lead to tumours on both auditory nerves that can result in deafness and problems with balance, tumours that grow on the spinal cord, and tumours causing pressure on parts of the brain. Schwannomatosis causes tumours in the brain and spine, and chronic disabling pain. Each case of NF is unique.

Despite the discovery of the genes for NF1, NF2 and Schwannomatosis there is still no cure.

The Children’s Tumour Foundation of Australia (CTF) funds critical research into NF and provides support to children, their families and adults diagnosed with the disorder. Funds raised from Cupid’s Undie Run will go towards sustaining vital support services for people living with NF, and to promote world-class research as we work towards developments in treatment and finding a cure for the debilitating condition.


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