Federal Government commits $8 million to the Children’s Tumour Foundation and NF Research
It is a historic day for those living with Neurofibromatosis (NF) in Australia. This morning, Minister for Health and Aged Care, The Hon. Greg Hunt MP, announced an $8 million investment to support the Children’s Tumour Foundation (CTF) and NF research.
Aside from the recent funding grant for the TiNT MEK Inhibitor Clinical Trial, this is the most significant Government funding and acknowledgement of those living with NF in Australia’s history.
The announcement comes after numerous discussions over the past 12 months with both Minister Hunt and our local MP, The Hon. Dr Fiona Martin, about the complexity of this condition, its lack of awareness of NF and how the NF community can be best supported moving forward.
With this investment, $7 million will be set aside within the Medical Research Future Fund (MRFF) as a dedicated NF Research Grant Opportunity. It will support ground-breaking research projects to develop new interventions and improve healthcare and outcomes for people living with NF.
In addition to the MRFF research funding, the government will also provide $1 million over four years to the CTF to enable us to continue supporting and advocating for both adults and children living with NF.
Special mention must be made to NF community member, Shelly Lynde for her efforts in helping to secure the initial meeting with Minister Hunt. Thanks to her story, as well as that of Kirsty, Shelby and Jackson Whitehead, he came to the meeting informed and open to discussion about how the government could alleviate some of the concerns of the broader community.
It was humbling to be able to chat openly with Minister Hunt and his advisor about the challenges that we have faced as a family and feel genuinely heard. We left that meeting feeling positive about the future for NF families and the CTF, who have been the only source of support for so long. It is something I can talk about with my son Alex with intense pride and know we helped do something remarkable, " said Shelly.
We acknowledge that every story told, and every voice raised as part of a campaign to bring NF out of the shadows has contributed to this moment. It is 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.
For such a long time, we have felt invisible, under-funded and under-recognised. The hardworking NF community have advocated and fundraised tirelessly for years and to have that effort and this community finally recognised is incredibly moving”, said Zoe Rehbein, Mum to NF Hero Emme.
The significance of this moment is not lost on us. After a challenging 12 months, and the continued uncertainty due to the pandemic along with growing donor fatigue, meant there was a risk that the needs of the NF community would continue to be over-shadowed by more immediate concerns.
The uncertainty of NF creates fear, but it is our mission to help those living with this condition navigate a pathway from fear to hope. At the centre of that hope is research and with these funds, there is now significant opportunity for world-leading scientists and medical professionals to explore more effective treatments for all types of NF that will have direct impact on Australian patients.
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