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Children's Tumour Foundation

2020 Christmas Appeal

A donation today, gives NF families hope for a better tomorrow. All donations or gifts will be directed to research into more effective treatments for Neurofibromatosis in Australia.

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Life in 2020 has changed the world and us along with it, but as we head into the new year, it is reassuring to know there is something good right around the corner.

As early as January, the TiNT MEK Inhibitor Clinical Trial (MEK Trial) will begin to enrol patients for the five-year study.  In an Australian first, the trial will investigate the effectiveness of Trametinib for the treatment of plexiform neurofibromas and optic pathway gliomas. In addition to monitoring the expected reduction in tumour size, it will also monitor the improvement in pain, function, and quality of life, as well as brain function and social development.

This study has been much anticipated by everyone impacted by Neurofibromatosis and we are incredibly proud to have helped it reach this point...but we are not done yet!

This Christmas, we need your help to wrap this clinical trial up in a big blue and green bow.

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Jackson was diagnosed with NF1 as an infant and has spent the better part of his life in and out of hospital. He has global developmental delays and was told he would never walk. He did. He has two brain tumours that have caused irreparable damage to his sight and was told to prepare for a day when he may lose it completely. He still might without access to drugs like Trametinib.

He has a heart deformity, severe scoliosis, as well as Autism, ADHD, and an intellectual disability. But, his spirit is strong. 

While other mothers were celebrating their children's milestones, Kirsty was learning to read Jackson's cues. She could tell when he was starting to get sick when he started to use the wrong muscles to breathe, and she knew the exact moment it was time to get him to hospital. 

When Jackson was three, a passing comment was made to their GP that he had “chameleon eyes”. He was immediately sent to an Ophthalmologist who reassured them that everything would be fine, but ordered an MRI to be on the safe side.  It was the first and last time they walked into an appointment to get results with such a positive outlook. The MRI results showed a thickening of the optic nerve and confirmed that a tumour had started growing. 

As Jackson reached the age of 9, he had started running into things and was mistaking objects. An MRI revealed a brain tumour; an optic glioma in the middle of his brain that would require constant monitoring. If the brain tumour grew or changed in any way, he would require immediate chemotherapy. However, chemo has only limited success in shrinking these types of tumours. If at any point a biopsy was required, this would involve cutting into his scull from ear to ear and lifting his brain out to take a sample from underneath. He risks complete blindness or worse in every scenario.

Clinical trials like the MEK Inhibitor is key to finding more effective treatments for kids like Jackson.

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Our goal is to raise the final $50,000 needed to support this important trial. Not only do we want to be able to fulfil our financial commitment by the end of the year, but start to build a dedicated research fund for future studies and trials.

Lily is a bright, bubbly 13-year-old girl, but her life hasn’t always been this way. She was diagnosed with NF1 when she was 9 months, and by age two had developed an orange-sized lump at the base of her spine.

It was a plexiform neurofibroma that caused severe, stabbing pain and had a negative impact on her quality of life.

The pain caused by pressure on her tumour from laying or sitting in one position for too long meant she was unable to sleep through the night or travel in a car for longer than an hour.

For most of her childhood, Lily was so scared and anxious about someone bumping her tumour that she missed out on many of the things kids her age were doing, like birthday parties, playing sport or even heading out to the shops. 

To help ease her pain, Lily was placed on a daily schedule of medication, but the combination of pain and pain relief meant she tired easily. Her little body was so dependent on the medication that if she missed a dose, she would be in severe pain for most of the night. 

In 2015, her neurologist gave the family their first glimmer of hope in 8 years. She was given the opportunity to join an internationally-led clinical trial that would give her access to the MEK Inhibitor, Trametinib.

It was almost inconceivable how quickly Lily's life changed. Her pain decreased dramatically, she was able to attend school more regularly and start to form friendships with her peers. She was able to live her life without fear and anxiety of someone accidentally bumping her tumour. 

Lily's participation in the international research trial has helped pave the way for the Australian clinical trial we are now raising funds to support. She is a living testament to its potential to have profound impact on a person's life. 

It is comforting to know her involvement has meant other kids and young people will be given a second chance at a happy, more carefree life. A normal life." - Joanne Dwyer, Lily's Mum


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