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NF Hero Wall of Fame


Not all heroes wear capes. Heroes aren't perfect or flawless; they aren't always the loudest and they don't always win. They are ordinary people who make themselves EXTRAORDINARY by making the world a better place for ALL people. 

The NF Hero Wall is dedicated to those who have joined the fight to conquer NF. 

Here you will find everyday heroes who have challenged themselves in the name of NF awareness and fundraised over $500 to help #conquerNF. That is certainly something to be celebrated.

MEET OUR FUNDRAISING CHAMPIONS

CAM ELLIOTT

Cam Elliott is father to NF Hero, Libby who was diagnosed with NF2 at the age of 4 and has since undergone numerous surgeries including her brain and spine.  

  • For every $500 raised, Cam will walk 1km of the 10km Canberra awareness walk carrying 40kg for the 1 - 40,000 kids that have NF2.
  • $2500: He will do the walk with hearing protection to block out sound. This is to replicate being deaf and NF2 causes the development of benign tumours, called vestibular schwannomas on the nerve that carries sound and balance information from the inner ear to the brain (the eighth cranial nerve). These tumours affect both ears, often leading to partial or complete hearing loss.
  • $5000: He will grow a Moustache. Why you may ask? After Libby’s first surgery she thought she was a monster and wouldn’t have any friends from the effects the surgery had to her face. According to Cam, “ Me with a Mo is not pretty and it’s the only why I can replicate Libby feeling like a monster”.
  • $7500: He will maintain a blade smooth shaved head. This is to replicate the effects of Chemotheraphy which some of the NF families Cam knows are undergoing as they desperately try and fight NF.
  • $10,000: He will walk the last km blind folded (with help from Libby) because NF2 can also cause the development of cataracts, potentially compromising vision. 
  • Cameron’s goal is $15,000 and will add more challenges once he reaches the $10k mark. Currently, Cam is just under $4,000.
CLICK TO DONATE TO CAM

DENA FARLEY

Dena is Mum to NF Hero, Carys, who was diagnosed with a brain tumour at age 9 after having multiple seizures . One year later, she was tested for NF2 after a tumour was discovered growing off her spine. 

Now 12, she is back at school and doing amazingly well and her whole family, including Mum, Dad and younger sister Keely are getting behind the NF Hero Challenge by pledging to ride 3 times around Narrabeen Lake in Sydney. 

That's a huge 25km!

Currently they are sitting at just over $11,000 which is a huge effort. You can get behind them by clicking the link below.

CLICK TO DONATE TO DENA

RACHEL SKELTON

Rachel Skelton is the National Campaign Manager for the Children’s Tumour Foundation and mum to Isabella (Bella), a beautiful NF HERO. 

Bella is 5 and was diagnosed with NF1 at just 6 weeks old. She has tumours compressing her cervical spine and sees a range of specialists and undergoes MRI’s under GA every 6 months. Rachel has devoted her life to fighting NF. If she raises $3000 in the NF Hero Challenge, Rachel will confront her fear of cockroaches and will allow hundreds of cockroaches to crawl on her head for 30 seconds. For every $1000 she raises over her target, she will extend the time for 10 seconds. 

According to Rachel, “this challenge is terrifying, but children and adults with NF are braver than I could ever be. I have seen first hand what my daughter has to go through. I have had to pin her down to have her put under general anaesthetic for her MRI’s. I’ve had to physically restrain her so an opthamologist can inspect her optic nerves for tumours. I’ve had to cuddle her and wipe away her tears far too many times, and for her, this is her normal”.

CLICK TO DONATE TO RACHEL

JAI WHITBREAD

Jai is a front-row forward for the Gold Coast Titans NRL team.

He grew up just south of the coast in Tweed Heads, NSW and cemented his spot in the NRL this year after making his inaugural NRL debut against the Sydney Roosters in mid-2018. 

Jai is a proud ambassador for the Children’s Tumour Foundation. He believes that the foundation ‘is doing great things and is a great platform to raise awareness for Neurofibromatosis’. 

Jai has been eager to support the Australian NF community and has accepted the NF Hero Challenge to fundraise for a cure. His challenge is that he will be waxing his legs and live streaming the experience. According to Jai, "this is a small challenge compared to what these brave kids face day to day". 

CLICK TO DONATE TO JAI

BIANCA, OUR HERO

Bianca was diagnosed with NF1 at age 4 after Mum Hilda noticed she was falling over a lot and consistently getting her colours wrong. The worst scenario she had allowed herself to imagine was that she would need glasses, but an MRI was to reveal an optic nerve glioma and a diagnosis she was not prepared for.

Bianca is now 11 years old and recently completed her second round of chemotherapy to try and save her vision.

Their Challenge: Dad, Roger will jump into Port Phillip Bay in the dead of Winter dressed only in a yellow tu-tu and yellow #conquerNF T-Shirt in support of Bianca. If they raise $10,000, Hilda will join him.

CLICK TO DONATE TO BIANCA

SIMON DAVIES

Simon's son River is number 5 out of 6 kids and was diagnosed with NF1  just over a year ago. It was a journey to reach this diagnosis despite having visited numerous doctors and specialists looking for answers. It was only after googling birth marks that Mum Karisha, came across the possibility that he may have Neurofibromatosis. 

Her suspicions were confirmed a month later with a clinical diagnosis. River currently has no adverse signs of the disorder, but Simon knows this could change at any moment because living with NF is like living with a ticking time bomb. 

To support his son and other children just like him, Simon has pledged to ride a mountain bike 100km through fire trails of the Blue Mountains from Glenbrook to Wentworth falls return

CLICK TO DONATE TO SIMON

HEATH REGO

For Heath's son Max, his NF journey started with a cataract being removed from one of his eyes and a trip to the podiatrist to find out what could be done for a persistent limp that was getting progressively worse. The podiatrist was more than concerned and instructed them to see a neurologist urgently as he believed the issue with his foot was a symptom of something larger. 

Max was diagnosed with NF2 at age 7.  He has endured numerous surgeries, including one that put him in a wheelchair for over 3 months with an external fixator to correct a severe drop foot. 

Health has pledged to get the CTF Penguin tattoo’d on the side of his rib cage, and stream it on Facebook so people who donated can watch if they watch if he reaches $1000. 

CLICK TO DONATE TO HEATH

KATE CHAMBERS

For many living with NF, access to the appropriate services can be a challenge - particularly if they are located outside of the cities. This is the case for Kate who must travel 286km from her front door to Westmead Children's Hospital in Sydney for her appointments.

To draw attention to this, she has pledged to run 286km throughout the month of August with a goal to raise $5,000 for the Children's Tumour Foundation.

CLICK TO DONATE TO KATE

ALEX McHUGH-DOUGLAS

Alex is a family friend and mate to NF Hero, Hamish. 

Hamish is 16-years-old and has NF1. In 2017 he has a foot reconstruction which landed him in a wheelchair for 4 - 5 months. In July 2019, he had an aggressive, encased plexiform neurofibroma removed from around his sciatic nerve.

Alex has pledged to shave his hair with the goal to raise $6,000 for the Children's Tumour Foundation. Many of his friends and family think that it is "about time", but we think Alex was just waiting for the right moment and the right cause to lose those luscious locks.


CLICK TO DONATE TO ALEX

JADE NAVARRO

Jade's daughter Evie is six years old and was diagnosed with NF last year. Evie is the first in her family to have this condition and is the inspiration for Jade's fundraising. So far, Evie's only symptoms are her cafe au lait marks and a couple of fibromas, she is flourishing at school and a keen soccer player. It is the uncertainty of this condition that scares Jade's family the most. They don't know what the future holds for their beautiful girl. 

Originally, Jade was only going to attend the NF hero family day with her family in the hopes of connecting with other families but upon registration, she was given the fundraising page too. So she decided to participate with the hope of raising awareness of this condition and hopefully some funds to aid in research. 

When Jade was deciding her challenge, she was thinking about her biggest fears. But she realised that it's not about her, it's about Evie. So she did something to honour her instead. Evie has always been a unique character, so bright and bubbly with an infectious smile. For someone so young she is incredibly kind and generous. That is where 31 days of kindness was born, why not be like Evie? The flow-on effect of this kindness and positivity is amazing!

CLICK TO DONATE TO JADE

ANDRE LE

Andre has chosen to get involved for the NF Hero Challenge, as his pastoral care teacher at school has NF and he has been Andre's mentor for almost 6 years. He is still an incredibly kind man and Andre wanted to do something to give back to him. His challenge itself is because he has always enjoyed physical exercise, but Andre wanted a way to push himself further than he has before. 

Doing 100 squats every day is something he has never done before, often forgetting to do leg exercises, so he decided this would be the perfect opportunity to catch up! The variant jump squats are difficult for Andre, and he has to use two sets of 50 to be able to get through it without his legs burning. He knows that those with NF struggle with physical pain and by participating in a physical activity that causes him physical pain (albeit a different kind), Andre can share, in a way, the struggle that NF victims endure every day. 

CLICK TO DONATE TO ANDRE

LEE & MELINDA SHRIMPTON

Lee and Melinda Shrimpton have used the opportunity of the NF Hero Challenge to raise awareness about NF for their 2-year-old son Jack, who was diagnosed with NF1 in 2018. 

 Jack was born with a bowed leg which was diagnosed as Tibial Dysplasia; a rare condition (1 in 150,000) which is a symptom of NF1.

As a family, they are still grappling with Jack’s prognosis of NF1 and the greatest challenge is the unknown which lies ahead. Little ‘Jack Jack’ is a funny little boy whose cheeky, good humoured and extremely determined; qualities, they are sure will serve him well facing NF1.

CLICK TO DONATE TO TEAM JACK JACK

EDWARD HAYEK

Edward is 14 years old and has NF1. He was severely bullied in primary school and went through brain surgery in 2016. 

For the NF Hero Challenge, Edward faced his fear of heights by doing 3 of the top 4 hardest courses at tree tops. They were between 12-15 meters high. He chose tree tops because when Edward was younger and before he had his tumour removed, he hated heights. 

Edward faced his fear as that is the approach he takes with his NF. It is hard and it can be scary because the future is uncertain. But he realises that this is his life, so he's going to make it fun and make it count.

CLICK TO DONATE TO EDWARD

JESSICA SZULEROWSKI 

Jess inherited NF1 from her Mum and was diagnosed with a brain stem tumor at 16. She had surgery with 80% of it being removed. 

Due to NF, Jess has learning Disabilities, including being on the Aspergers Spectrum. This has always made it hard for her to fit in, especially as she grew older, and now as an adult. 

It has also made it hard for Jess to find work,  despite the fact that she holds a BA in English Literature. 

Jess is getting involved in the NF Hero Challenge to support others living with NF too and has already exceeded her fundraising goal!

CLICK TO DONATE TO JESS

LOUISE SKILBECK

"I meet real-life NF Heroes and their families every day in my job as CEO of the Children's Tumour Foundation. 

I am joining this NF Hero Challenge to challenge myself and conquer my fear of heights. This will not be done easily. For many of you doing the famous, iconic Bridge Climb would be "awesome" but for me its 3 hours of terror!"

CLICK TO DONATE TO LOUISE

JULES PHELAN

Jules' son Charlie has NF1 and is the reason she is participating in the NF Hero Challenge. Jules has been a consistent supporter of CTF, by opening up about Charlie's journey with NF, as well as running successful NF Hero Days in Warracknabeal with over 200 people attending!

Jules recently had a broken ankle, so she is challenging herself by walking a full 5 kilometres to get back on track! An impressive effort and motivation for many. Thank you for all of your hard work and fundraising that you've done for us.

CLICK TO DONATE TO JULES

COURTNEY & JORDAN

Throughout the month of August Courtney and Jordan have raised an impressive about of money for CTF. 

Their NF Hero Challenge was to face their fears of heights and that's exactly what they did! They showed their bravery by both jumping out of a plane! 

Not only did it make them feel invincible, but it has brought them closer as friends.

CLICK HERE TO DONATE TO COURTNEY AND JORDAN

BRIAN SHAW

Brian is 61 years old and has NF1. His very first operation was on a tumour near his eye when he was only about 18 months old. Brian had approximately 20 – 30 operations mainly on his eye by the time he was about 20. 

Since the early 1980’s, Brian has tried to actively promote awareness of all types of NF in both the community and the school that he has taught at. In the last few years, Brian has tried to be an active participant in all the fundraisers that have occurred especially in the ACT where he has raised close to $10,000 during this time. 

Brian has used the NF Hero Challenge as another opportunity to do some amazing fundraising for CTF and awareness of all types of NF.

CLICK HERE TO DONATE TO BRIAN

TEAM SPENCER

Team Spencer was created for Spencer (11); who was born a fighter, and an NF Hero. Since he was diagnosed with a spontaneous mutation at 12 weeks, Spencer's family have begun a long journey learning and trying to understand NF1.  At 3, Spencer was diagnosed wth Neuroblastoma, a children’s cancer, that required immediate treatment.

Throughout his life, Spencer has undergone multiple life-threatening surgeries. He still has well over 20 tumours in his neck, chest and on his central nervous system. NF has already affected his hearing, his learning, his speech, his physical capabilities, but one thing it hasn’t changed is his spirit & outlook; he classes himself lucky and boy is he inspirational. 

CLICK HERE TO DONATE TO TEAM SPENCER











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