10/07/2013 09:19 EDT | Updated 01/23/2014 06:58 EST

My Story, Your Story, Let's Tell Government!

In my post last week I shared a bit about October's Brain Tumour Awareness Month, but also about the hope and strength of each patient and family. It's truly these families whose struggle needs to be shared beyond their homes and personal networks, but all the way to the decision-makers in government. We need to make our noise loud enough for them to hear us.

It is estimated that every day 27 Canadians are diagnosed with a brain tumour. It's a terrifying statistic - and frustratingly one based only on information pulled from the United States. I was shocked to learn that in Canada, every brain tumour is not counted. Provincial cancer registries are responsible for tracking malignant brain tumours but low-grade masses, like meningiomas, or even my own central neurocytoma, do not have a home in many provinces. As a result there is not a complete reflection of all brain tumour patients in Canada. We can't identify clusters, we don't know the scope of all tumour types, and the advocacy for the best interest of the community is slowed.

The need for a standardized system to gather brain tumour statistics simply can't wait. When every person with a brain tumour in Canada is counted and accurate Canadian data about brain tumours is available, efforts to ensure equal access to drugs, treatments and services for all brain tumour patients will accelerate.

In addition to the need for better statistics, coordinated approaches to address the multifaceted issues associated with a brain tumour diagnosis are critical. One of these issues is equal access to the best evidence-based care for all Canadians living with a brain tumour. Anyone faced with a brain tumour diagnosis in Canada needs access to support and information so that they can proactively seek out their best care while gaining hope from brain tumour research.

This month, I invite any Canadian affected by a brain tumour to participate in Brain Tumour Foundation of Canada's campaign to share their story of impact with government at Here, patients, survivors and families can complete a simple form to tell their story to the Minister of Health and the health critics of each political party in their province, as well as in Ottawa. Many stories have already been shared, but we need you, please add your journey to help affect real change.

Awareness of this disease among those who make decisions about health care, research and services is critical to make changes like ensuring every brain tumour is counted and that patients have access to the care and treatment they deserve.

We can make change, together. So, join me this month and let's shout from the rooftops about brain tumours to those we have elected visit,