Neurofibromatosis (NF) awareness month in May is an important event for those living with a condition that has been in the shadows for too long. A debilitating and unpredictable condition, NF is one of Australia’s most common genetic neurological disorders. Over 10,000 Australians are affected by NF, and yet awareness surrounding it is still very low. To shine a light on this disease and acknowledge the struggle of all affected by it, over 100 of Australia’s most prominent landmarks and buildings will light up blue and green on 17 May.
Neurofibromatosis is a group of genetic disorders that manifest differently in every individual, however, it can cause tumours, hearing loss, blindness, physical variations, abnormalities in the bones, learning difficulties, chronic pain, and cancer. People born with NF require constant care, and unfortunately, there is not yet a cure for this condition. Scientists have struggled for many years to understand the intricacies of this complicated disease, and many questions still remain to be answered.
The Children’s Tumour Foundation (CTF) is currently helping to raise awareness surrounding NF, through continuing advocacy, campaigns and crucial fundraising activities. During this year’s NF Awareness Month, events and activities include the Shine a Light on NF light displays, a virtual fundraising challenge called Steps Towards a Cure and the inclusive invitation for everyone to wear a ribbon in blue and green to support those affected by this condition.
‘This will be the third year we form part of this global initiative to light up buildings blue and green in May’, says Leanne Dib, CEO of the Children’s Tumour Foundation. Australia will join 12 other countries in this pivotal moment as we incite important conversations and raise awareness about this little-known disease.
This is an event of hope, acknowledgement and empathy for the families and people affected by NF. Participation across the country would be greatly appreciated by all involved, and your local ‘Shine a Light on NF’ light displays can be found here. NF can affect anyone, no matter their age, gender, ethnicity or background. Bringing this condition into the spotlight is an important step to recognising this disease and finding a cure to make the lives of people living with it easier.
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