What is the Tumour Foundation?
The Tumour Foundation of BC is a registered nonprofit charitable organization that has been supporting individuals and families affected with neurofibromatosis since 1984.
Through our support, education and research programs we strive to improve the lives the patients and families living with this genetic disorder.
We are now on a mission to raise funds to establish the first medical care clinic for those affected with this tumour disorder.
With no medical experts or specialized clinic in the province where families can go to receive care, parents are forced to become the experts in managing their child’s NF. Can you imagine your doctor looking to you for answers and direction on how to treat your illness? That’s what families experience every day after receiving an NF diagnosis.
The Tumour Foundation of BC is on a mission to change this and optimize the health and well-being for all British Columbians affected by NF — but we need your help!
What is Neurofibromatosis?
Neurofibromatosis (NF), pronounced neuro-fibroma-tosis, is a genetic disorder of the nervous system that causes tumours to form on the nerves anywhere in or on the body at any time.
NF is the most common genetic neurological disorder caused by a single gene.
NF tumours can lead to deafness, bone deformities, learning disabilities, disabling pain, and cancer. There is no cure.
NF is more common than cystic fibrosis, Duchenne's muscular dystrophy and Huntington’s disease combined and effects over 2.5 million people worldwide.
There are three distinct forms of neurofibromatosis: NF1, NF2 and schwannomatosis.
To learn more about NF we invite you to click on the link below.
"I have 3-4 thousand tumours in and out side my body and horrific pain.”
“It makes me very self conscious that people notice my tumours. It also makes me fear the future knowing that most likely more tumours will grow and I won't be able to have them removed unless you have money. It's really not fair.”
“People stare. I can't get work, I’ve been asked to leave public places and the nurses in hospital wouldn't touch me because they thought they would catch my tumours.”