Shining a light on NF

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The Children’s Tumour Foundation (CTF) is rallying support to bring neurofibromatosis (NF) out of the shadows this month.

Despite being one of Australia’s most commonly diagnosed genetic neurological conditions, awareness of NF is relatively low. In aid of NF Awareness Month, CTF hopes to improve the understanding of the signs and symptoms of NF and empower the stories of those affected by the condition.

“May is our opportunity to shine a light on NF,” says Leanne Dib, who is CEO of Australia’s leading charitable authority existing to support all people impacted by NF.

“We hope to spark new conversations by sharing the stories of people living with NF, lighting up landmark locations blue and green, and by putting increased pressure on the government to acknowledge and support improvements in care for those impacted by the condition.”

Understanding NF

NF is a set of three complex lifelong genetic conditions; NF1, NF2 and Schwannomatosis.

Progressive and unpredictable, it causes tumours to form on nerves in the body, including the skin, brain and spine. These tumours can lead to physical differences, blindness, deafness, learning difficulties, chronic pain, and scoliosis and in 10% of people living with NF, these tumours can become cancerous.

There is no cure and treatment options are limited.

Over 10,000 people are living with NF in Australia and a child is born every three days with the condition. The CTF estimates that over 50,000 Australians are directly impacted by NF with parents, siblings and carers also managing the realities that come with loving and caring for someone with NF. The most common form of the condition (NF1) affects one in every 2,500 adults and children in Australia.

NF Awareness Month

Throughout May, over 125 Australian landmarks, monuments and buildings will be illuminated blue and green, leading up to and culminating on World Neurofibromatosis Awareness Day (17 May). Australian locations taking part in the global Shine A Light initiative include Federation Square, Melbourne Cricket Ground and Flinders Street Station in Melbourne, Old Parliament House in Canberra, Darling Quarter and the Luna Park Ferris Wheel in Sydney, Brisbane City Hall in Brisbane, Adelaide Oval in Adelaide and the Optus Stadium in Perth.

The Foundation will also ask people to “Open their Eyes” to NF and encourage supporters to get creative with blue and green eyeshadow. The initiative asks supporters to stand out and speak up so that people with NF don’t have to; sparking important conversations online, in the workplace and with friends about what it means to live with NF.

Get involved

For more information on NF, visit ctf.org.au.