Dialog Box

Children's Tumour Foundation of Australia

Our Ambassadors

legacy ambassadors

Legacy Ambassadors are individuals or families who have sought to support the growth, development or sustainability of NF research initiatives through long-term contributions made to the Children's Tumour Foundation.

eddie & melanie listorti

Eddie and Melanie Listorti have been long-time supporters and benefactors of the Children's Tumour Foundation (CTF) on behalf of their daughter Anna. 

The Listortis, along with Honorary Life Patron, John Hughes and his wife Robyn, have made a commitment of $50,000 each for 3 years - a total of $300,000 - to establish and develop the NF Centre for Translational Research and Complex Care at Royal North Shore Hospital on behalf of the CTF. 

This clinic specialises in the treatment of complex medical problems related to NF and serve as a hub for NSW Health to advance patient care. It will assist in ensuring better diagnosis and care for NF sufferers across NSW. Melanie and Eddie said they hoped their support would make it easier to help NF patients. 

In their own words… 

It has been our great honour and privilege to be recognised as Ambassadors of CTF and we hope that from our contributions and the many, many others that have done the same, that there will be some benefits, relief and hope to sufferers of NF. Every day we witness firsthand what it is like living with NF. The anxiety, fear of the unknown, constant monitoring, untold doctors’ appointments and scans. Then there are the daily emotional impacts on our daughter of not feeling normal, because she lacks the skill sets most kids take for granted, and just wanting to feel accepted at school. Then it’s topped off with all the related physical issues that make her life so tough. 

We have the utmost sympathy and respect for all families living with NF and we are reminded frequently how fortunate we have been to have met and become friends with many of them. 

So many times we have heard and seen the stories of bravery, selflessness, acceptance and innocence from the sufferers and their carers. This has only encouraged us to accept, love and help as much as we can.

We are delighted to have this opportunity to support the Children’s Tumour Foundation and the work being carried at out Royal North Shore Hospital.


NF AMBASSADORs

NF Ambassadors are members of the NF community who have expressed a desire to be an active part of our efforts to raise awareness and understanding of NF by sharing their story through different channels. This may be through public speaking engagements, online or in the media, or simply by being a voice of experience for others in the NF community.

These roles are volunteer-based and for many are an empowering experience that give greater purpose; generating better understanding and compassion for those living with this condition. 

Please get in touch with our marketing team if you would like to invite one of our NF Ambassadors to speak at your next corporate or community event: fundraising@ctf.org.au 

Janu  Dhayanathan

Janu was born with Neurofibromatosis Type 1 (NF1), a devastating and debilitating genetic disorder that causes tumours to grow on any of the millions of nerve endings of a person’s body. Being from a close-knit Tamil community, her family and extended family felt that it was best to keep her diagnosis hidden and she has been holding onto her secret for more than two decades.

Now 37, Janu recalls spending much of her life in the “shadows”, never admitting to anyone the difficulties she faced from both a health and an emotional perspective. She started to develop external cutaneous neurofibromas as she reached puberty which only grew in number and size as she got older. Noticeable and disfiguring, she often felt isolated and alone, unable to share with others why or even connect with those most likely to understand and empathise, the NF community.

She did not let it define her life, though. She overcame the learning difficulties that had plagued her school days and graduated with a Diploma in Network Engineering and followed it up with a Degree in Digital Media. She now works as a Product Analyst at uno Home Loans.

In 2019, Janu connected with the Children’s Tumour Foundation (CTF), the leading, and only national charity in Australia supporting people with NF. She was scheduled to undergo an operation to surgically remove hundreds of cutaneous neurofibromas from her head, neck and shoulders that were causing pain and discomfort. The lengthy procedure would require her to shave her head, so instead of feeling dejected about losing her hair, she decided to turn a potential negative into a positive. 

With the support of family and close friends, she shaved her head to help raise money for the CTF and more specifically, an Australian-run research trial that could change the way patients with NF are treated. It was a life-changing decision with many unexpected benefits. Not only did she raise over $16,000 for the trial within a single month, it also liberated her from many invisible bonds.

She chose that moment to share her experience of NF with her wider family, friends and colleagues in a positive way. She was finally free to embrace and talk about every part of herself and feel proud. At no point did she ever expect to raise as much money as she did, but more importantly it was the first step towards breaking down cultural and social behaviours that see a person’s imperfections as something to be feared or avoided. Her condition had become both unifying and empowering. She even live-streamed the event to ensure everyone who donated could be part of the experience.

Since then, Janu has expressed a desire to be a NF Ambassador, using her story to continue the fight by helping to raise awareness of the condition. She has become a regular speaker at events run by the CTF and is now mentoring other young adults by giving a voice to the social isolation and anxiety of living with NF through video.

ABC Online Article NF IN FOCUS VIDEO NF IN FOCUS: BREAST SCREENINGS 


CTF AMBASSADORS


Amoss McKinley

Amoss McKinley has been an ongoing supporter and Ambassador for the Cupid’s Undie Run over the last few years and is not afraid to put his pecks on show for a good cause.  

Located in Sydney, Amoss is a well-respected Firefighter for NSW Fire and Rescue. You may recognise him from his feature in their 2017 Firefighter Calendar! Amoss is not only an inspiring hero in our everyday lives, but he is motivated by the bravery of our NF Heroes. Amoss holds a strong presence at our Cupid’s Undie Run event; diving headfirst into the fun games and activities we have planned and getting to know everyone who comes along. If you see Amoss at Cupid’s, don’t be afraid to say hello or take a photo, he’s got big muscles and an even bigger heart!

   @amossmck

Cameron Merchant

From the hit Channel 9 TV show Married at First Sight, Cameron Merchant is one part of the nation’s favourite couple.

Cameron, an ex-pro-cricketer has scored over 1,000 runs in First and Second XI cricket. He’s led a fantastic career playing cricket in Australia, New Zealand and Canada. Merchant is now the stand-in first grade captain of Manly Warringah District Cricket Club in Sydney Grade Cricket.

Cameron’s support for the Children’s Tumour Foundation came naturally after he formed a special bond with one of our beautiful NF Heroes Libby. Meeting by chance, the two grew close due to their mutual love for Taylor Swift. Cam loves helping at our NF Family camps and has even managed to get Jules to play beach cricket! 

Cam’s genuine passion and immediate attachment to the CTF is why we are so excited to have him on board as one of our Ambassadors.

      @cammerchant

Davina Smith

Davina hosts the Nine Network’s Morning News and Afternoon News, and is the newsreader for Today Extra.

She started with the Nine Network in 2009 – first as a producer then as a journalist and presenter, working in the Network’s Sydney and Brisbane newsrooms. On the road as a reporter, she has covered a range of stories -from crime scenes to court cases, natural disasters, elections and presidential and royal tours. She’s also hosted the network’s national rolling coverage on major breaking news stories including Sydney’s Lindt Café Siege.

Davina is married to Mark – a Blackhawk helicopter aircrewman with the Australian Army. Their daughter Rose was born in 2016. Davina has formed a special bond with a number of our NF Heroes and is especially saddened by the fact that many of them suffer bullying and find making making friends difficult. As a passionate advocate for mental health, she is committed to helping raise our awareness and has been supporting the Children’s Tumour Foundation for over many years.

      @davinasmith9

Kevin Sullivan

From forensic police crime scene investigator to singer-songwriter, Kevin Sullivan is starting to make his mark on the Australian Country music scene.

In 2018 he fulfilled a life-long dream and released his debut album Belonging, which debuted at #2 on the iTunes Country album chart. Later that year Kevin Sullivan was a finalist for Single of the Year for his song ‘Outback Australia’ and Male Vocalist of the Year at the Southern Star Independent Awards at Mildura. He has played music and performed all his life – whether at Gympie or events like the iconic Birdsville Races. 2019 has seen him performing at a number of venues and festivals including the Big Country Festival in Berry NSW alongside Lee Kernaghan, The McClymonts, Travis Collins and The Wolfe Brothers. Kevin also played a sold-out concert with the legendary Bill Chambers on the South Coast and is a regular at the Kiama Loves Country Festival. Additionally, he has also played at this year’s Murrumbidgee, Ballina and Mildura Country Music Festivals as well as supporting Amber Lawrence on her Spark Tour. 

Kevin will be performing at the 2020 Tamworth Country Music Festival with a number of highlights including:

  • Country Turns Pink, West Tamworth Leagues Main Auditorium in aid of The McGrath Foundation 
  • Pure Country Spectacular, Capitol Theatre Tamworth in aid of RUO'K
  • Bill Chambers Sessions, The Pub, (Including performing the duet co-written with Bill Chambers)
  • The Welders Dog Hotel
  • Toyota Fanzone
  • The Square Man Inn

He will release his sophomore album in 2020 which was recorded in Nashville TN and Australia.

"Kevin is very passionate about giving back to his local community and charities. He became aware of Neurofibromatosis 18 months ago when he met Julia and her daughter Jessica, who both have this genetic condition. Their sheer determination and story inspired him to become an ambassador for Cupid's Undie Run. "What's not to love! It aligns all of the brands I love, in a fun community event which raises vital awareness and funds for the Children's Tumour Foundation to help find a cure to this devastating disease affecting so many families.I feel very privileged to be a part of it." 

   @kevinsullivan

Felicity Egginton

Felicity Egginton from Survivor and more recently, Survivor All Stars explains what being an ambassador for the Children’s Tumour Foundation and the Cupid’s Undie Run means to her…

"In 2016 I was a contestant on Survivor – It was the hardest, most amazing experience of my life. I came 4th and when I returned home, I went from being a normal Gold Coast girl, to having people recognise me from TV and I knew that I wanted to use this platform to make a positive difference in my life and in others.

Being an Ambassador for The Cupid’s Undie Run isn’t only about raising money and awareness, for me, it is also about connecting with those who have NF and their families. Being a Cupid’s Undie Run Ambassador has changed my life and inspired me to be a better person. I have met some of the most amazing people and feel honoured to be given the opportunity to connect with these families through this charity. The CTF is unlike any other charity I know of, it is small but it is full of the most passionate people, who dedicate their lives to conquer NF and funding a cure or a treatment! I have met so many inspirational kids, men, women, parents and families that live with NF and am always in awe at their strength and find that they have such a positive outlook on life. The NF community is like a family and there is so much hope and love within it, that I am so glad to be a part of it.

I am not just an Ambassador for the Cupid’s Undie Run, but I am now a friend to many and feel connected on a deeper, personal level with this cause. I can’t wait to continue to raise awareness, and connect with more people to help grow this charity, so that those living with NF can have a better and happier life- like they deserve. I really believe if we come together, we can conquer NF!"

   @felicityegginton

Josh Horner

Australian born Joshua Horner is a Star of Stage and TV.

He’s been a judge on Australian “Dancing with the Stars”, choreographed the hit Disneyland Parade “Soundsational”, and was the choreographical inspiration behind the water dance for the night time spectacular “World of Colour” at Disney’s Californian Adventure.

His international music theatre career spans from “Billy Elliott” on Broadway to playing “Tony” in “Movin’ Out” on London’s West End, as well as starring as Zach in “A Chorus Line” in Australia. Other musicals include “Dirty Dancing”, “Guys and Dolls” (UK) and “Tivoli” where he won the Australian Dance Award for “Most Outstanding Performance in a Musical”. Josh was the star of his own show in the USA called “Oh My Josh” on Freeform and Hulu. 

Currently Josh has flipped careers and is now a Real Estate Agent selling houses on the Central Coast NSW for The Property Market and is getting quite a reputation for his “sold dance”.

Josh was our amazing MC at the Cupid’s Undie Run event in Sydney 2019, successfully keeping the crowd excited all day. His support for the Children’s Tumour Foundation grew further when he attended one of our Family Camps and formed connections with our NF community. We’re so excited to have Josh’s enthusiasm and genuine interest as we conquer NF!

      @joshuajhorner

Josh Langley

Award winning author, illustrator and daydreamer.

Josh Langley went from failing high school (twice) and being unemployed to becoming an award-winning radio copywriter and award-winning author. His quirky and inspirational books have inspired thousands of people of all ages around the world and helped them to see life from an entirely new perspective. Josh’s second children’s book, ‘It’s Ok to Feel the Way You Do’ won the 2018 Australian Book Industry Awards Small Publisher’s Children’s Book of the Year. 

Josh’s message that it’s okay to be different is what makes him a perfect Ambassador for the Cupid’s Undie Run, where we run to #celebratedifference.

Discover more at www.joshlangley.com.au

Jules Robinson

From the hit Channel 9 TV Show “Married at First Sight”, Jules is a businesswoman who has enjoyed plenty of success in the beauty industry both within Australia and abroad.

Jules’ support for the Children’s Tumour Foundation came naturally after her "husband" and co-Cupid’s Ambassador, Cameron Merchant, formed a special bond with one of our beautiful NF Heroes, Libby. After attending the Cupid’s Undie Run in 2019, and then joining us on one of our NF Family Camps, Jules’ connection to the CTF and NF community has grown, making her a perfect Ambassador and inspiration for our NF heroes.  

   @julesrobinson82

Justyna Kalka

Justyna Kalka is a qualified nutritionist, professional speaker and health educator who specialises in promoting optimal health through wholesome, nutrient dense food and movement.

After completing a Bachelor of Health Science in Nutritional Medicine at Endeavour College of Natural Health, Justyna devoted herself to educating others about the true vitality that comes from a careful balance of real food, the right mindset and a healthy dose of movement. She is a popular speaker on health and nutrition, providing presentations and workshops for primary schools and city councils across Melbourne.

Justyna’s nutrition expertise has featured in the media, with appearances on Channel 10 News and contributions to nutritional stories in Nourish Magazine and Australian Natural Health Magazine, as well as Herald Sun, Daily Life, Cairns Post, MamaMag and various others. “What gets me excited in my work as a nutritionist is the empowerment people feel when given the tools to build the health and vitality they desire.”

Outside of her work, Justyna is an avid fitness lover and Black Belt martial arts expert with a special interest in helping families create a healthy food culture at home.  Justyna educates parents, teachers and children about the importance of proper nourishment for growth, development, mental performance and wellbeing and so was drawn to the Ambassador role for the Children’s Tumour Foundation. She has been amazing in not only challenging herself for fundraising initiatives, but also consistently supporting our NF community.  

   @jkhealth

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