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.
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.
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:
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 the 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)