Help care for what the scans can't see
Neurofibromatosis (NF) is a complex condition that is monitored closely for tumour growth, but these scans can't see the loneliness, overwhelm and uncertainty families face.
The scans can show where tumours are, how they’re growing and what needs to be monitored. But they can’t show the worry that never lifts, the children who withdraw or the exhaustion families feel navigating life with NF.
That’s where connection and support can make a real difference.
Your gift can help children, adults and families connect with others who understand what living with NF is like, through camps and online peer support.
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The hidden truth of chronic illness.
NF impacts more than the body. It can affect self-confidence, relationships and mental health.
- 71% report psychological distress
- 45% experience social isolation
- 36% have been bullied
Living with NF can take a heavy toll on mental wellbeing that no scan picks up.
Your support today will help children and adults living with NF find the connection and community they need.
Bella's story: the hidden cost of a complex condition
Thirteen year old Bella sees multiple doctors for NF tumours, scoliosis, epileptic seizures, mobility challenges and learning difficulties.
Living with NF means she often misses school to attend appointments and her friendships with peers have faded.
Everything changed when Bella attended an NF camp, becoming fast friends with other kids her age.
"...It has been beautiful to watch her connect with other young people without the usual social difficulties she can sometimes experience. They could simply hang out, have fun and be themselves" shares Melissa, Bella's mum.
You can make a difference for more kids like Bella
With your support, we can run more camps across the country and bring more families into our online connection programs.
Camps
Attending appointments can be lonely and scary. Our camps bring kids together and offer them a chance to have fun and make friends.
NF Connect
At school, at the hospital, at the family barbecue, a person with NF is often the only one there. Our virtual peer support groups bring the community together for meaningful time together.
You can give the part of care that no scan can.
Your gift is powerful. Over 90% of families who attend our camps report an improvement in their wellbeing. And newly diagnosed families tell us how important the virtual meet ups are.
As one family shared: "When our child was newly diagnosed we didn’t know what we didn’t know. NF Connect was a chance to learn from others and connect with parents who knew what you were going through."