Welcome to the Tumour Foundation of BC!
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.
Exciting Developments in NF1 Treatment Options: A Look Forward
Dear Community,
As we continue to navigate the complexities of Neurofibromatosis Type 1 (NF1), there are new reasons to be hopeful. I'm excited to update you on significant advancements in treatments that have recently reached milestones in the United States.
Firstly, mirdametinib, a MEK inhibitor, has recently been approved by the FDA for use in adults with NF1. This approval marks a pivotal moment, as it extends new treatment possibilities beyond pediatric patients to adults, offering a broader hope for those affected by this condition.
Additionally, HLX-1502 received US Orphan Drug Designation. This treatment, discovered through cutting-edge artificial intelligence, offers an alternative therapeutic pathway for both plexiform and cutaneous subtypes of NF1. This designation is a crucial step towards developing more targeted and effective therapies for our community.
While the timelines for the submission of these drugs to Health Canada are currently unknown, our optimism grows with these developments. Our team has reached out to SpringWorks Pharmaceuticals and Healx for updates, and we are committed to keeping you informed as we learn more.
It is encouraging to see the groundwork laid by efforts such as Alexion's with Koselugo (selumetinib), now listed under Special Authority in BC’s Pharmacare for pediatric patients. This progress paves the way for newer therapies and underscores the importance of persistence and collaboration in bringing life-changing treatments to those who need them.
Let us continue to stand together in hope and action, as we advocate for swift access to these innovative treatments in Canada. We believe that every step forward is a step towards a better future for those living with NF1.
Thank you for your enduring support and shared commitment to our cause.
Warm regards,
Desirée Sher
Executive Director
"I have 3-4 thousand tumours in and outside 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.”
"Because of my NF I have become totally deaf in one ear and lost my facial nerves on the left side of my face, plus I’ve lost my vocal cords and now I can barely speak at all."