Research is The key to hope

Today there's no cure for NF tumours. Tomorrow's another story.

in it for the long run

Despite neurofibromatosis (NF) being one of the most common genetic conditions, research into NF remains underfunded, and treatment options far too limited.

In recent years we have funded new research projects, but in many ways, we're just getting started.

We're stepping up to the challenge. And we're asking you to do the same, because breakthroughs take a team.

Meet some of the children and adults whose lives have been impacted by NF, and could greatly benefit by research into more effective treatments for NF, and eventually a cure.

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

Meet run champion, thomas

Four-year-old Thomas is our Run Champion for the Steps Towards a Cure 2024 campaign. He was clinically diagnosed with Neurofibromatosis Type 1 at 15 months old, after an unsettling infancy. Months of searching for answers, mum, Amanda recalls feeling a "a strange sense of relief" when she was told about Thomas' diagnosis.

Since then, Thomas' life has been far from ordinary – enduring unexpected symptoms, multiple surgeries, countless doctor's visits, and long-distance travel from his home in the Northern Territory to access appropriate clincal treatment and care.

Recently, Thomas has been able to access Trametinib to stop tumour growth. But, after experiencing severe side effects, he has had to pause and restart treatment several times. Now, Thomas is back on treatment but the future remains uncertain.

For Amanda, research is the key to more effective treatments for children like Thomas, and hopefully, a cure .

Meet RUN Champion, archie

Archie was diagnosed with a kidney condition when he was three months old. Two years later when his speech was falling behind, his parents took him for further medical assessments.

"Within an hour and a half, neurofibromatosis type 1 was on the list for investigation, and my heart stopped," says Archie's mum, Kate.

Soon after being diagnosed, Archie and his family had to relocate from their small regional town in Queensland to access specialised paediatric care. This meant leaving behind their close-knit community in Tambo.

Feeling isolated and grappling with Archie's diagnosis, mum, Kate, found comfort when she came across the Children's Tumour Foundation.

"The Children’s Tumour Foundation is the support that we were linked to at the time of Archie’s diagnosis when we didn’t know which way to turn, we simply felt isolated," she says.

Raising over $23,000 for Steps Towards a Cure in 2023, Archie and his family emphasise the need to invest more into research to improve health outcomes for children like Archie.

"Archie’s NF journey is life long, it’s degenerative and the variables are unpredictable. That is the present, but just imagine the goal of a cure... Imagine."

Find out more

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02 9713 6111

fundraising@ctf.org.au

PO Box 454, Five Dock, Sydney, NSW, 2046

All donations of $2 and over are tax deductible in Australia