a CASE FOR SUPPORT

8 August 2023

Today was an auspicious day for the Children’s Tumour Foundation of Australia.

In collaboration with the Parliamentary Friendship Group for Child and Adolescent Health and Mental Health, co-chaired by Dr Mike Freelander MP, Dr Monique Ryan and Dr David Gillespie MP, we were invited to Parliament House, Canberra, to share our knowledge and experience in supporting and advocating for children, adults and the families impacted by neurofibromatosis (NF) in Australia.

As the only dedicated patient advocacy and support service for those impacted by NF in Australia, we take pride in the contribution we make to our community, knowing that without us, there is no other non-clinical service provider to help ease this burden. But we cannot do this in isolation. Advocating for greater access to services and investments in research is critical.

We were pleased to be able to welcome several community members from the ACT, NSW and SA, along with members of our board, Medical Advisory Panel and Community Advisory Panel, who gave a face to the condition, and helped shape a better understanding of the impact that NF can have on more than 13,000 people in Australia.

A/Prof Mimi Berman provided an overview of the condition, the progressive and unpredictable nature of the disease and the limitations in treatment that are currently available to patients. Something that was made real by the following guest speaker, Gabriella Castellerin (pictured below with CTF Ambassador, Janu).

Gabriella and her mother, Angela travelled from Sydney to talk about Sarah. A sister and daughter who was taken far too soon and in the most horrific of circumstances.

Gabriella shared a moving account of her sister's journey with Federal MP's in an effort to demonstrate the need for support and the devastating outcomes that can result after a diagnosis of NF.

“It was torturous watching her go through treatments that had minimal effect, but maximum impact on her quality of life. She bore the unbearable nerve pain, the side-effects from the surgeries, the long recoveries in between, the radiotherapy, and the anxiety and depression that came along with it all”, said Gabriella.

Sarah passed away only four months ago and this was the first time that Gabriella had spoken about so publicly about losing her sister, but she is determined to be Sarah’s voice and will continue to advocate for change.

Dr Gaby Dabscheck, Paediatric Neurologist at the Royal Children’s Hospital in Melbourne talked about a model of care that is having significant success in monitoring and supporting children with complex needs manage their condition and transition to adult care. Something that Sarah could have benefited from.

We had a video message from Claudia and her two children, who were diagnosed with NF1 after her youngest child was diagnosed with an optic pathway glioma at age 4. Previously unaware that Claudia was even carrying the gene, Zoe is now blind in one eye, her son has learning difficulties, and she has had several tumours removed from her breasts since diagnosis. Each an example of the variability of this condition and the need for improved diagnosis, as this will lead to earlier intervention and ultimately, better health outcomes.

While there is much still to be done to improve the lives of those living with NF and their families, it was also an opportunity to acknowledge the ongoing support Federal Health has provided the Children’s Tumour Foundation since 2021 thanks to ongoing advocacy from the CTF and the NF community, in particular Shelly Lynde and Kirsty Whitehead.

This support includes $1 million invested into our frontline services and a further $7million committed to NF research (of which $4.6 million has been granted) via the Medical Research Future Fund. A turning point for the organisation, and a weight lifted for a community who have shouldered the burden of raising awareness, while also fundraising for critical support services and research for decades. The CTF has raised and contributed $1.3m towards clinical trials and medical research over the years, in additional to $1.7m towards support services.

But this is a drop in ocean compared to what is needed.

As an organisation, we have always understood the importance of balancing the most immediate needs of the community through our support services, with the long-term vision to investigate and advance access to more effective treatments. So, our message to government was simple.

In addition to seeking support to renew and grow the investment from Federal Health into frontline services, we are also asking for the remaining $2.4million be honoured and a further commitment to Australian NF medical research made in 2024.

This is the start of a long journey, but it is without doubt a positive step forward.