Dialog Box

Children's Tumour Foundation of Australia

Our Ambassadors

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, committed $50,000 each for 3 years ending in 2022 - 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 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.