Dialog Box

Children's Tumour Foundation

Zoe Rehbein

Most mothers are heroes to their children. Zoe, however, has taken that status to a level that most people are not strong or brave enough to reach.

With two healthy sons, Zoe was excited to welcome her daughter Emme into the world. However, at just 9 weeks old Emme was diagnosed with Neurofibromatosis (NF). In the anxiety and confusion that followed, Zoe and her husband attempted to navigate this complex disorder within an even more complex Queensland Health System.

Zoe found relief in connecting with the Children's Tumour Foundation (CTF), but soon came to the realisation that awareness of the CTF and NF were lacking. Determined that no family should have to go through what hers did, she began advocating for the CTF, NF awareness and improved local care in Brisbane.

Now, five years old, Emme unfortunately has developed a life-threatening tumour on her brain stem. Despite having had to juggle her daughter's gruelling chemotherapy and multiple specialist appointments, Zoe has been chair for the Queensland CTF committee, a local event manager for the Cupids Undie Run and a spokesperson for NF.

Despite Emme’s significant health issues, Zoe still finds the time and strength to fight for improved awareness and access to specialist care for the Queensland NF community. Through her volunteer work with the CTF, Zoe has been a strong and empathetic advocate for families needing specialised support at the Queensland Children's Hospital.

In addition to improving access to community services and specialist care for the Queensland NF community, Zoe has managed multiple community fundraising events. Her personal fundraising team at the Cupid's Undie Run has been the largest in Australia. "Emme’s Cupid’s" has over eighty people, which in itself reflects just how far reaching her advocacy and passion to create change has been. In the years since Emme was born, Zoe’s team has fundraised close to $100,000 for the CTF.

She personally shares her journey with media outlets to improve awareness and has shone a light on NF and the lack of government support the CTF receive (which is less than $2 a patient). She has also created partnerships between local Brisbane businesses, who now regularly support the cause. 

It is through Zoe’s commitment to advocacy that she has effectively nurtured a sense of belonging and inclusion within the NF community; bringing families together and providing them with community support that previously did not exist.  

Through hard work, action and persistence, she has personally created a supportive environment for children to meet other children with NF and for adults to support one another.  At camps and community days, she will personally cook bbq’s or spend months organising raffle prizes, sponsors and engaging the broader community.

Zoe does all of this while juggling specialist appointments, three children, extracurricular activities and while also studying to be a counsellor. She fundraises and actively improves awareness and access to community services, while helping her five-year-old daughter live her best life.

Zoe fights for her daughter and her community with a strength and tenacity that leaves everyone who meets her in awe and shock. She never gives up and is always so selfless, compassionate and positive. We cannot think of traits that could be more heroic. 

Zoe has undoubtedly changed lives, and is determined to continue doing so.

If Zoe 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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Zoe Rehbein

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