The BC Neurofibromatosis Foundation


Every year, hundreds of families in crisis throughout British Columbia ask us, “Where is the NF clinic?”. We are done telling them that there is no clinic and no medical expert to manage their care.

We have raised $90,000 of our $115,000 clinic budget and now ask you to help put us over the goal line.

NF is a genetic disorder which affects 1 in 3,000 individuals. The hallmark of the disorder is tumour growth on the nerves in the body. Besides tumours, NF can also cause complications such as disfigurement, bone deformities, learning disabilities and cancer.  Although largely unknown, NF is a genetically-determined disorders which affect more than 2 million people worldwide; this makes NF more prevalent than cystic fibrosis, Duchenne muscular dystrophy, and Huntington's Disease combined.

Children with neurofibromatosis (NF) deserve access to a clinic where they access receive specialized medical care for the multi-systemic effects of the disorder.

As it stands now, parents already overwhelmed with caring for a child with multiple health needs, carry the added burden of managing their child’s health care. This often includes researching the management of the disorder on behalf of their family doctor who has little or no experience in the medical needs of the patient with NF, and who looks to the family for guidance.

Many family practitioners will only see a small handful of patients with this disorder in their busy practice. Because of this, they are often unmotivated to learn more about NF or stay current on the current management and treatment practices. This leaves the NF patient having to become the expert of his or her own health care.

We have the power to change this.

Family Story:
A family was told that their young son’s brain MRI showed “spots”. For nine months the family waited to get the answer that “the spots on his brain” were just the typical unidentified objects found with NF and would disappear without incident in adulthood.  For nine months, the parents waited to see a pediatric oncologist and get a subsequent referral to a neurologist. That’s a whole lot of worry time for the family fearing that their son had malignant brain tumours.

The BCNF believes that with passion and perseverance – coupled with your financial support – we can make the dream of a clinic a reality in 2017.

Please say YES! to improved care for the children and adults affected with NF and make a donation today.

We are stronger together.

The BCNF Board and staff with you and your family a very happy and healthy holiday season.

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