Will you lend your voice to support AUSSIES living with neurofibromatosis (NF)?
As the only patient advocacy and support service in Australia for children, adults and families impacted by NF, we are seeking your assistance to ensure the Children’s Tumour Foundation has the financial support needed to build capacity of our support services and drive advances in the care and treatment of everyone living with NF through research.
Why is funding needed?
Despite NF being one of the most common genetic conditions, awareness amongst health professionals, funding for supports and treatment options are lacking.
More than 13,000 Australians live with this complex genetic condition, with half of these individuals having had no family history of NF.
Whilst NF doesn't discriminate, equitable access to care across Australia can. We fill the gap that clinical care is unable to meet, providing personalised, accessible information and services completely free of charge.
We exist to ensure that everyone impacted by NF, including neurofibromatosis type 1 (NF1), NF2-related schwannomatosis (NF2) and all other types of schwannomatosis (SWN), feels connected, educated and able to more easily navigate their way through our often-complex health system.
The impact of NF changes with each stage of life and no two cases are the same, but the need for support is universal. With greater awareness and funding comes earlier diagnosis, more access to interventions and ultimately, better health outcomes.
What will be funded?
CTF SUPPORT SERVICES - Addressing immediate needs for education and connection
We are often the only place for someone to turn to, supporting families throughout their diagnosis, treatment and beyond. We provide a national helpline, clinical nurse specialists in two major children’s hospitals, a comprehensive knowledge base, camps, community days and peer support initiatives, like NF Connect, a monthly virtual meetup. With growing demand for services, none of this would be possible without ongoing government funding.
MRFF FUNDED RESEARCH - Investigating health implications, treatments and a cure
In 2021, the Medical Research Future Fund (MRFF) awarded $7million for NF research and invested $4.6 million in four Australian projects. This funding was the first of its kind in Australia and was secured thanks to the advocacy efforts of the NF community and the Children's Tumour Foundation. $2.4million remains available in the MRFF to be allocated to NF research projects, requiring a new grant round to be opened. We are advocating for this to be honoured, and in time increased.
What can I do?
We are asking our community to send a personalised letter/email using our free downloadable template to rally your local, state and federal parliament members to share the challenges faced by those impacted by NF.
In addition, we are asking for the letter to acknowledge the need for the Children's Tumour Foundation. You can include statements such as "without the Children's Tumour Foundation, I...". Examples of support could be the connections you've made at camp, insights provided by our support coordinators, the information obtained in our resources, etc.
Please CC us in your email, as we will collate all letters and combine this with our funding submission. We hope you will see this opportunity as a chance for us to continue working together, influencing change-makers to join us as we work towards a life without limitations for everyone impacted by NF.
dOWNLOAD LETTER TEMPLATE
suBmitted A LETTER? pLEASE LET US KNOW BY COMPLETING THE FORM BELOW