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Rebecca is Chair of the CTF Community Advisory Panel and Senior Project Officer, Tasmanian State Government
About Rebecca (Bec):
Bec lives in Hobart, Tasmanian. Bec has NF type one and has known about her diagnosis all her life. Bec joined the Community Advisory Board as a way to ensure the support she received as a child would continue to the next generation.
Bec attended the University of Tasmania and thanks to the UTas Disability Advisor and the support provided for students with disability, Bec graduated with a Bachelor of Commerce, Bachelor of Information Systems in 2004.
Bec has a keen interest in disability sport, she competed as an athlete with disability in both swimming and rowing. Throughout her professional career Bec has worked in both Melbourne and Hobart in diverse project roles, she currently works full time for the Tasmanian State Government as a Senior Project Officer.
In her spare time Bec enjoys knitting, cooking, bush walking and spending time with her family and pets.
What attracted you to join the Community Advisory Panel at the CTF?
I joined the Community Advisory Board as a way to ensure the support I received as a child would continue to the next generation. Back in the late 80s and 90s when I was a child CTF was known as NFAA. I received support through Community Days and by being provided literature aimed at myself and for my parents, just like CTF do today.
The Community Days were a wonderful experience for me, while I was often the only child it was fantastic for me to meet adults with NF, and to get to know them, learn from their experiences and to see what they had achieved.
What do you wish people knew about NF?
I wish people knew how complex NF was.
In your opinion, why does NF need more support?
Due to how complex NF is the support required is massive, it can impact so many areas of your life at all stages of your life.
What role do you think the Children’s Tumour Foundation plays in supporting NF families?
CTF does so much to support families with NF, providing fact sheets for milestones from birth through schooling to adulthood. CTF also provide support by connecting people with NF through camps, get togethers and zoom sessions, these are invaluable.