ADVOCAcY IN ACTION

By the Children's Tumour Foundation

The Children's Tumour Foundation's (CTF) Parliamentary event in Canberra (August) opened many new and existing doors to allow our team to meet and discuss the need for increased supports to improve the lives of all people living with neurofibromatosis (NF).

NF is prevalent, yet obscure and does not discriminate by ethnicity or gender. With 1 in 2000 people impacted, it is incredibly important that our elected officials understand just how many people are living with it, the current challenges within the health system and the need for better representation of services across all states, territories and electorates. 

Following this event, Leanne Dib (CEO) and Ruth Lindsay (Head of Support Services) together with NF Community member Zoe Rehbein, met with the Hon. Mark Butler MP, Federal Minister for Health and Aged Care in September. 

Minister Butler invited us to meet with him and his senior advisor Jamie Snashall to provide an overview of the challenges facing thousands across Australia living with NF, the work currently happening at the Children's Tumour Foundation, and our goals for the future.

It was an opportunity to reinforce how grateful we are to Federal Health for the existing support and the opportunities to grow capacity and extend research. 

We look forward to continuing this partnership into the future.

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While in Canberra, we also had the opportunity to meet once again with Sally Sitou MP, Federal Member for Reid (our local member), and friend of the Foundation. Sally has provided her support and guidance to us over the last 12 months, locally from her office at Burwood and from Parliament.

Sally has been a voice for us, advocating for increased awareness and understanding in her electorate and amongst her colleagues in Parliament. 

On Wednesday 13 September, Leanne Dib (CEO) and Ruth Lindsay (Head of Support Services) met with the Shadow Minister for Regional Health, The Hon. Dr Anne Webster MP. This was an opportunity for us to share more of the experiences that many with NF face in rural and regional Australia; building understanding now, to support greater action in the future.

At a local level, Leanne and Ruth met with the Drummoyne Community Cabinet in early September. It was a chance to connect with our local business leaders, thanks to the support of our local State Government member, Stephanie Di Pasqua MP and her to team.

Through this meeting, we were also able to connect in with Mark Speakman MP, Leader of the Opposition in the New South Wales Legislative Assembly; Bronnie Taylor MLC MP, Shadow Minister for Regional Health; Mark Coure MP, Shadow Minister for Jobs, Industry, Innovation, Science and Technology; and Shadow Minister for South-Western Sydney; Robyn Preston MP, Shadow Minister for Mental Health and Medical Research; Justin Clancy MP, Member for Albury, former Parliamentary Secretary for Health and Matt Kean MP, Member for Hornsby and Shadow Health Minister.