Dialog Box

Children's Tumour Foundation

Amy O'Rourke

Amy has created a community support network that has changed the lives of those living with NF.

Amy has been a volunteer and supporter of the Children’s Tumour Foundation (CTF) for a number of years. In 2019 she volunteered to manage and coordinate our largest community fundraising event, the Cupid’s Undie Run in order for the event to take place on the Gold Coast. It is through her role as race director for the CTF and her qualification and experience as a mental health nurse, that Amy has been able to build a support network for the NF community on the Gold Coast and effectively unite NF families from across the state. 

Amy is a mum of two, a wife and she works full time for Queensland Health, helping others. Amy’s career in mental health means that she is exposed to despair and heartache on a regular basis. 

In addition to this, Amy’s son has Neurofibromatosis Type 1 (NF1) and a brain tumour. Every six months William requires monitoring and surveillance of his tumours, including MRI’s under general anaesthesia and a series of specialists.

Somehow Amy manages to see the positive in every situation. 

Not only does she refuse to let William’s NF diagnosis define him, she has been determined to volunteer all of her spare time to improve the lives and experiences of all those who have NF.  

Amy spends countless hours coordinating the CTF events and offering online and phone support to NF families to establish and foster a sense of belonging, community and wellbeing. She selflessly supports those who may otherwise experience social isolation and marginalisation. Amy has seen first-hand how her son’s NF has impacted his appearance and the heartbreak watching him try to scrub off his NF spots at just four years old. 

Amy has spoken to NF community members who have been a victim of bullying or discrimination based on their visible differences. She is on a personal mission to develop a community support network and improve awareness about NF to ensure that the broader community are more tolerant and accepting of diversity.  

Despite experiencing her own personal blows from NF, including learning that her child has a tumour, Amy is able to compartmentalise and see beyond herself to the bigger picture. She recognised how important support for QLD NF families was and took it upon herself to carry some of the weight of this largely invisible community on her shoulders. She does this so often without thanks or recognition. She does it because there are families who are living with tumours as their normal who are struggling to navigate the medical system and find support. 

If Amy is successful, the CTF will create a new patient registry to help identify both adults and children who would benefit from clinical and support services, as well as future research initiatives. 

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Amy O'Rourke