Carey Russell – Canberra Race Director

Introducing Carey, the always hilarious and super motivated race director for Canberra!

Carey was diagnosed with NF as an adult, after having her daughter, who also has NF1. A lot of Carey’s concerns growing up were passed off as dermatological issues, which happens due to a lack of awareness of NF, even within the medical community. It took many doctor’s visits before Carey’s neurofibromas were diagnosed accurately and so she only learnt about NF 2.5 years ago.


Carey wants people to know that NF can affect each person differently – no two cases are the same, which makes it difficult to find specialists who will understand the disorder and be able to diagnose it correctly.


Carey found the lack of support and understanding of NF to be frustrating and has dedicated her spare time to create change and raise awareness.

According to Carey, our campaign message of “Celebrate Difference” is important because everyone’s story is different and people should be able to share their story without judgement.

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