Neurofibromatosis (NF) is a genetic disorder that can affect anyone. It can cause tumours to grow on any nerve ending in a person’s body and therefore each person will face different challenges and potential complications depending on the size and location of the tumours and their rate of growth.
Fortunately, some people will only ever develop mild symptoms, but others will have on-going, complex health issues that may eventually become life-threatening. Each person therefore has a unique journey and their needs change as they move from childhood, through adolescence and into adulthood.
The Children’s Tumour Foundation (CTF) is the leading charity in Australia supporting those impacted by NF, empowering individuals and their families with the knowledge, connections and support needed at every stage of their journey.
We believe that tumours should never be a child's "normal", and we are on a mission to #conquerNF!
The CTF is the national voice for the NF community. We advocate on behalf of people affected and collaborate with hospitals, government bodies and educational institutions to help improve the life outcomes of people with this genetic disorder.
We believe that tumours should never be a person’s normal and exist to help families navigate a pathway from fear to hope in three ways.
By providing access to critical support services:
Beyond the need to treat the physical symptoms of NF, living with this condition can take an emotional toll too. The CTF creates opportunities for people to come together in a safe and supportive space; encouraging them to connect, learn and share stories to help reduce feelings of social isolation and anxiety.and encouraging them to connect, learn and share stories to help reduce feelings of social isolation and anxiety.
At the CTF, we provide:
- National phone and online support network
- Family camps and community days
- Information Seminars
- Online chat sessions
- Parenting support groups
- NF Sipper Clubs
By investing in effective treatments:
NF can lead to a range of significant health issues including deafness, blindness, paralysis, physical differences, bone abnormalities, cancer, learning difficulties and chronic pain. We invest in better treatment solutions and health outcomes in two key ways:
- Multi-disciplinary NF clinics that give patients access to support coordinators and specialist clinical nurses who help patients and their families navigate the complex hospital system and provide information on diagnosis and treatment options for the ongoing care and monitoring of NF symptoms.
- Research into effective treatment solutions that deliver better understanding of the impact of NF on social and developmental issues like autism, ADHD anxiety, auditory processing and other learning and behavioural issues, as well as bringing advanced Phase 2/ 3 clinical trials of drug treatments, shown internationally to be successful, into Australia.
By raising awareness & advocating for the NF community:
NF is more common than Cystic Fibrosis, Muscular Dystrophy and Huntington’s Disease combined, but awareness is lacking - even amongst healthcare professionals. In addition to raising awareness through campaigns and fundraising initiatives, like the Cupid’s Undie Run, we also collaborate with hospitals, help our members navigate health systems and their government entitlements, while also providing information on contact details for medical and allied health professionals who have experience treating NF patients.
Working with state and federal governments, we advocate for improvements in availability and cost of diagnostic scans, medications and improved treatment options.
We also create opportunities for schools, corporate and community groups to engage and fundraise to help improve the life outcomes of people with this genetic disorder.
Funds raised from the Cupid’s Undie Run will go towards sustaining these support services and treatment solutions.
About the eventAbout Neurofibromatosis (NF)