What We Do
Our goal is to conquer NF.
Improved knowledge of NF and access to support services is critical if we are to improve the outlook for all people impacted by the condition.
In Australia one in 2,500 people are affected by NF, making it more common than some widely recognised conditions like Cystic Fibrosis, yet there continues to be low community awareness and little support available for people affected by NF.
A diagnosis of NF presents many challenges - physical and psychological but also barriers to accessing the best care and support from childhood right through to adulthood. Whilst Australia leads the way in NF research, being home to world-leading medical researchers, there remains critical gaps in clinical services for children and adults across the country that the Children’s Tumour Foundation of Australia is dedicated to bridging with the support of the community.
Our focus lies in three main areas:
CTF has placed two Support Coordinators in Sydney and Melbourne and has a longer term goal of providing support on the ground in each state across Australia.
Our growing NF Support Network aims at:
- Providing practical support to sufferers and their families to break the isolation of NF;
- Ensuring access to critical information on diagnosis, treatment options and monitoring of NF to aid decision making and self management;
- Providing access to a Support Coordinator via the phone, online or in person to discuss concerns, challenges and general emotional support across the NF journey;
- Building a registry of specialists in a wide range of related health disciplines who understand NF;
- Establishing and supporting a network of peer support groups who can share experiences; and
- Coordinating and promoting community based activities like camps and family days that build connection and offer respite and support to the NF community.
Advocacy & Education
Despite being more common than some widely recognised conditions like Cystic Fibrosis, community knowledge and understanding of NF is low.
CTF is working hard at:
- Raising community awareness of NF and its impact on the community
- Educating GPs and providing resources to assist with the management and referral of patients; and
- Running locally based forums for people impacted by NF to connect and access the latest information, treatment options, clinical trials and research.
Advancing Medical Research and clinical capacity
Funding research is critical if we are to understand NF and better treat sufferers. Fortunately, Australia is home to some of the best NF researchers in the world, and as the leading non-government funder of NF research in Australia, we are proud of what we have achieved to date with our research partners:
- $400k for NF centre at The Children’s Hospital at Westmead
- $266k for cream based treatment study at Royal North Shore Hospital aimed at reducing external tumours
- $25k for trial of Ritalin in children with learning disorders
- Funding the adult NF Clinic at Royal North Shore Hospital
- Partnering with the Murdoch Children’s Research Institute and the Royal Children Hospital in Melbourne to launch a new NF1 Clinic
Our work continues to have a tangible impact on the NF community - with our supportive care network making great inroads into connecting families and adults with information and resources and helping them navigate their way through the complexities of the health system to access the best care they can.
The funding of the NF Clinic at RNSH has seen waiting times for non-urgent cases drop from up to one year down to three months, which is an enormous relief for adolescents and adults receiving care from this service.
There is much more to be done in building these programs - in developing accessible resources for the NF community and in providing better quality services to adolescents and adults living with NF. We are making progress on understanding the needs of people affected by NF which will help us to prioritise what is most important to our stakeholders. And we have had good discussions with leaders in health service delivery to build better models of care, particularly for transition and adult patients.
In many respects we are at the beginning of our journey. We have laid out a roadmap which we believe will see us continue to build on these foundations - with an ambition for a third Support Coordinator in Queensland, the development of priority needs for the NF community and funding of the most promising research to bring more treatment options to the community.
Our many achievements have been enabled by community spirit and generosity.
Our agenda remains unchanged; to significantly grow our fundraising so that we can continue to invest in these important projects aimed at providing better support services and ultimately research outcomes for people diagnosed with NF.