Legislative Assembly for the ACT: 2017 Week 07 Hansard (Wednesday, 2 August 2017) . . Page.. 2423 ..
Original question, as amended, resolved in the affirmative.
Motion (by Mr Barr) proposed:
That the Assembly do now adjourn.
MS CHEYNE (Ginninderra) (6.21): It’s a bird! It’s a plane! It’s the NF Mega Heroes! It was quite a sight on 23 July. Canberra’s very own superheroes flocked to Lake Burley Griffin decked out in gold capes. They had a single mission: to join the NF Mega Hero March to raise awareness for neurofibromatosis. Neurofibromatosis is a term used for three genetic disorders that can cause tumours to grow on nerves throughout the body. They are NF1, NF2 and schwannomatosis.
These can be inherited from a parent or develop by chance due to a spontaneous change in an egg or sperm cell. NF1 is the most common of the three disorders and occurs in about one in 3,000 people. It can lead to growths on or under the skin. These growths usually are not cancerous but can lead to learning difficulty and the softening and curving of the spine and bones.
NF2 and schwannomatosis can lead to the development of benign tumours on nerves throughout the body. NF2 can lead to hearing loss, cataracts and eye abnormalities. Schwannomatosis can cause intense pain that is difficult to manage. Most people suffering from these disorders have near-normal life expectancies. But sadly some develop complications like blindness, bone abnormalities, cancer, deafness, disfigurement, loss of mobility and disabling pain. These conditions can make everyday tasks a challenge and may shorten a sufferer’s life.
Unfortunately, NF is not very well known. I had not heard of it myself until I was approached at one of my shopping centre stalls and also realised that was the condition being spoken about on one of the episodes of the TV show You Can’t Ask That on the ABC. Madam Speaker, you may be surprised to know that it is actually as common in our community as cystic fibrosis. Like cystic fibrosis, NF is a lifetime condition with no known cure. That is why events such as the NF Mega Hero March are such important opportunities to raise awareness of NF and to fundraise for research.
The Children’s Tumour Foundation organised the NF march in seven cities around Australia to increase awareness of NF. So far they have raised over $49,000 to help support people diagnosed with NF, including children. The march recognised the superhero courage and determination of those who are living with NF, and their families. The event in Canberra was organised by Carey Russell and Brian Shaw and was held on 23 July. I was very honoured to be an ambassador. Canberra’s gold-caped mega heroes walked 10 kilometres around Lake Burley Griffin, although some of us did just five.