Dialog Box

Children's Tumour Foundation

HELPING FAMILIES NAVIGATE A PATHWAY FROM FEAR TO HOPE

about us

Discover who we are, what we do and how your support can help change lives.

WHAT WE DO

NEUROFIBROMATOSIS   

Learn about the genetic condition that affects 1 in every 2,500 Australians  

LEARN THE FACTS

LIVING WITH NF

NF is a lifelong medical condition, but the impact of NF changes with each stage of life.

Read more

HOW TO SUPPORT

Fundraise on our behalf, support an existing campaign or use your voice to spark action.

FIND OUT HOW

TOGETHER WE CAN #CONQUERNF

“Parenting a child with a genetic condition can be a stressful and painful journey. Maintaining hope for a better future for the child you love is critical, and at the centre of that hope is research. Knowing that research is ongoing to better understand and treat NF keeps the hope alive for so many of our families."

 NF Hero Mum

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Libby’s NF2 journey began when she was 4 years old. What should have been a simple optometrist appointment for a lazy eye became a diagnosis of NF2 and a brain tumour. At just 4 years of age, one week after her first MRI, Libby was scheduled to have brain surgery. One of the tumours in her brain was causing her eye to push through the socket.

Every year since her diagnosis, Libby has faced another setback. In 2018, she required spinal surgery to remove an egg sized tumour from the lumbar region of her spine. In 2020, Libby had her routine MRI & her parents learnt that the tumour near her brainstem was infiltrating more nerves than originally thought. There is now no medical treatment available for her most dangerous and unstable tumour.

As parents, Cam and Jen crave normality but continue to fundraise and share their experiences in order to help families like theirs and to help children like Libby, find a better “normal”. 

So, what’s within your power to help kids like Libby?

 READ LIBBY'S STORY HERE

Latest News View all news

News

One genetic counsellor student's reflection of their time working with the CTF and meeting those with a lived experience of NF.

News

A personal reflection on one woman's journey from paediatrics to adult care. What she learnt and her advice for others.

News

With the effects of the pandemic extending for months rather than weeks, telehealth has become the new norm. But what does that mean for NF patients?

News

Children's Tumour Foundation Ambassador and Holistic Nutritionist Justyna Kalka shares why she is spending 3 minutes in an ice bath this September

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