Home - Children's Tumour Foundation of Australia

Let's bring NF out of the shadows this May

May is Neurofibromatosis Awareness Month. Help us start a national conversation and ensure every Australian impacted is supported and every Australian not impacted is made NF aware.

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Schools go Blue and Green on May 17

To celebrate NF Awareness Month, we want you to help us ask your school or pre-school to GO BLUE AND GREEN on May 17 to help raise the profile of Neurofibromatosis amongst peer groups.

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$8 million in funding Announced for Neurofibromatosis

On Wed 10 February, Minister for Health and Aged Care, The Hon. Greg Hunt MP, announced an $8 million investment to support the Children’s Tumour Foundation and NF research.

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WANT TO KNOW MORE ABOUT THE MEK TRIAL?

Want to know whether you or your child is eligible for the TiNT MEK Inhibitor Clinical Trial in Australia? Click the button below to find out more.

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MAKE YOUR BIRTHDAY EVEN MORE MEANINGFUL

In just four easy steps you can create a Facebook birthday fundraiser that will improve the quality of life for children and adults with NF by helping to fund life-changing support programs.

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EVERY 3 DAYS A CHILD IS BORN WITH NF IN AUSTRALIA

Neurofibromatosis (NF) is a set of three genetic conditions that cause tumours to form on nerves throughout the body, including the brain and spine. There is no cure and treatment options are limited.

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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.

HOW TO SUPPORT

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

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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

DONATE NOW OTHER WAYS TO SUPPORT

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