This May, more than 100 Australian buildings, monuments and landmarks will light up blue and green, culminating on World Neurofibromatosis Awareness Day on May 17. The idea is to shine a light on this condition, and help bring it out of the shadows.
Despite being one of Australia’s most common genetic neurological conditions, and causing a wide range of symptoms, awareness of neurofibromatosis (NF) remains far too low, something the Children’s Tumour Foundation (CTF) is changing through ongoing advocacy, awareness campaigns and fundraising activities.
This NF Awareness Month, initiatives include the Shine a Light on NF light displays, a virtual fundraising challenge called Steps Towards a Cure, and inviting everyone to Wear a Ribbon in blue and green to support those living with or impacted by NF.
NF is a group of genetic conditions (NF1, NF2-related Schwannomatosis and Schwannomatosis) that cause tumours to form in the body. Progressive and unpredictable, it can lead to significant health issues such as deafness, blindness, physical differences, bone abnormalities, learning difficulties, chronic pain, and cancer in 10 per cent of cases.
A child is born with NF every three days and will need a lifetime of support. Currently, there is no cure and many questions about the condition remain unanswered.
As part of Shine a Light on NF, some of Australia’s most iconic landmarks will light up blue and green for World NF Awareness Day, including; Australia Square, EY Building and the Olympic precinct in Sydney, the Big Banana in Coffs Harbour, Flinders Street Station and the Rialto Tower in Melbourne, Kurilpa Bridge and the Story Bridge in Brisbane, the Old Parliament House and the National Carillion in Canberra, the Riverbank Footbridge and Adelaide Oval in South Australia, and the Bell Tower and Crown Casino in Perth.
The Empire State Building in New York City will also light up for the first time, signalling a huge shift in focus for the condition.
Global initiative
‘This will be the third year we form part of this global initiative to light up buildings blue and green in May,’ said Leanne Dib, CEO of the Children’s Tumour Foundation.
‘It is an opportunity to spark important conversations about a condition that has been under-recognised for far too long and create critical points of connection and hope for families.’
Despite affecting more than 10,000 Australians, NF manifests differently in each person. For those with visible signs of NF, they can struggle to be seen as more than their condition, while those with invisible symptoms often struggle to make others understand.
For one family of five in Mount Gambier, South Australia, three members have been diagnosed with NF2-related Schwannomatosis (NF2) but there is significant variability in how it impacts each of them. Jason and two of his children, Lillie and William have NF2, while Emily and their daughter Ruby support them as best they can.
Unlike his children who were diagnosed early in life, Jason was 22 when doctors discovered a brain tumour. Within the next five years, he would undergo two brain surgeries and soon lose his hearing on both sides. Jason wrote down a wish list of things he wanted to do before losing his hearing; Emily saying her wedding vows; the word ‘Dad’; moving to QLD; buying a house and doing up an old car.
Now at 41, sadly, Jason’s condition has worsened and is receiving palliative care. Despite this, the family feels it’s important to speak up about their experiences and help others to understand. They have ticked almost everything except one off his wish list, still looking for the perfect car to do up.
Their children, William and Lillie were both diagnosed early in life with NF2. At 10 years old, William has NF vision loss in one eye and several tumours, including a significant tumour in his skull, which is monitored through regular MRIs.
His mum, Emily, shares that William and Jason have a strong bond, ‘The biggest impact NF2 has had to date on William’s life is not so much his own symptoms, but the realisation of how unwell his Dad is…William doesn’t like leaving Jason’s side for long,’ she said.
Lillie, 15 years old, has a brain tumour and has struggled with her diagnosis, impacting her mental health and well-being in many ways. She found it difficult to fit in at school, having personalised leg braces and has started to experience partial hearing loss and growing pain in her back.
Watching her dad deteriorate has been incredibly hard and not surprisingly, she holds concerns for her own health and her brother’s. ‘Dad lost his hearing completely when I was only one. Sometimes he asks Mum what we sound like and that’s really hard to hear for all of us,’ said Lillie.
‘I want to bring NF out of the shadows as many people have it and it isn’t talked about enough,’ said Lillie.
‘I feel that talking about it more will help normalise it so that more people are aware. NF affects each of us differently and can change the way we look and feel about ourselves because people can stare.
‘I’m grateful for the CTF raising funds to help kids like me and my brother to have a chance at living a normal life.’
Steps towards a cure
This year, the CTF also launched Steps Towards A Cure, a new virtual steps challenge that aims to raise funds for more life-changing research.
All Australians are encouraged to participate, throughout the month of May and help support the cause.
The CTF is the only dedicated support service for people impacted by NF in Australia. It provides personalised, accessible support and resources free of charge to every person impacted by NF, while also advocating for change and raising funds to advance promising research.
With limited treatment options and no cure currently available, social isolation, anxiety and depression are common among those living with NF. This May, you can support the NF community in Australia and drive change.
For more information or to make a donation, visit ctf.org.au/outoftheshadows.
To better understand the condition, you can also watch the emotional short film Out of the Shadows:
