About the charity

WHAT IS THE CTF?

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 affects one in every 2,500 births, which is more than cystic fibrosis, Duchenne muscular dystrophy, and Huntington’s disease combined.

NF causes tumours to grow on nerves throughout the body, affecting major organs, and can lead to blindness, bone abnormalities, deafness, disfigurement and learning disabilities. The tumours are benign growths, but can sometimes turn malignant. 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 mutation in the NF genes.

NF1 is the most common form of NF, and symptoms can range from mild to debilitating. Meanwhile, NF2 and Schwannomatosis are rarer, affecting one in 30,000 people. 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.

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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