Sometimes, even in the most trying of circumstances, an extraordinary opportunity can materialize.
I think that most British Columbians would consider the years of living with COVID-19 to be an incredibly trying circumstance. For people living with neurofibromatosis, COVID-19 has only added to the challenges faced every day; challenges such as isolation, living with pain, and lack of access to medical care.
Neurofibromatosis (NF) is a genetic condition that causes tumours to grow on nerves throughout the body which are often inoperable. NF can lead to complications such as disfigurement, bone deformities, vision impairment, hearing loss, learning disabilities, disabling pain, and cancer. Many individuals with NF were struggling with anxiety and depression as a result of their condition even before the pandemic.
At the Tumour Foundation of BC, our team has worked incredibly hard throughout the pandemic to support people living with neurofibromatosis. From that hard work has come an opportunity that years earlier we only could have imagined.
In October 2021, the Tumour Foundation launched a pilot project to address the medical needs of the adult NF1 community. Working with a physician based in the Toronto General Hospital, participants are for the first time accessing specialized care with one of Canada’s most highly regarded experts in neurofibromatosis. The launch marked a milestone in the Foundation’s 12-year fight for a clinic dedicated to the care of the more than 1700 people in BC living with neurofibromatosis.
While the clinic has only just begun, patients are already experiencing the impact of the clinic, as many of them feel hopeful about their future with NF for the very first time.
“I would encourage everyone to make an appointment with the virtual clinic. I found it very informative, I learned a lot about my NF that I was not aware of. It will benefit everyone in some way.” – Clinic Patient, Northern BC
“I am looking forward to my family doctor having ‘guided care’ from the recommendations that the clinic doctor made during my appointment.” – Clinic Patient, Vancouver Island
For a small organization like the Tumour Foundation of BC, the costs of self-funding the pilot project can quickly become overwhelming. We have hired an amazing nurse to help with bookings and referrals and to support our participants throughout the pilot. We have invested in software to manage medical records and track the outcomes of consultations. These costs are necessary and they are over and above the very real costs of running our other long-standing, highly successful support programs for those living with neurofibromatosis.
This holiday season, we invite you to be a beacon of hope by providing a gift to the Tumour Foundation of BC. Your donation will help us continue to provide specialized care and resources for the individuals and families affected by neurofibromatosis across our province.
Please consider making a donation to the Tumour Foundation of BC today. Even a small monthly gift makes a difference.
