Remembering the Past, Embracing the Future

A letter from Steve Northey, co-founder of Brain Tumour Foundation of Canada

In July of 1981, I sat listening to Dr. Hinton at Children’s Hospital in London, Ontario, as he told me that my 8-year-old daughter, Kelly, had a brain tumour. In a state of shock and without any medical knowledge or experience, I tried to digest the words- tumour, brainstem, inoperable, radiation. Diagnostic techniques and treatments were limited.

Kelly’s mother, Carolyn, and I realized there was little information for non-medical people that we as parents could turn to. We needed to understand how and why this happened to our daughter, and what steps had to be taken to deal with this devastating disease. There was some American literature, but nothing here in Canada that parents could use as a guide.

Sadly, Kelly passed away on January 30th, 1982.

My way of dealing with losing Kelly was to ensure that her death would not be in vain. In February 1982, I joined forces with Dr. Rolando Del Maestro, a neurosurgeon and brain tumour researcher who was starting up a laboratory at London’s Victoria Hospital. His wife, Pam Del Maestro, a neuroscience nurse, sat with us at their kitchen table, and the concept for the Brain Research Fund (the organization’s original name) was born.

We realized the benefit of connecting families in similar situations to share their experiences and learn from professionals in the field of neurosciences. This led to the formation of support groups and Information Days. It was the Brain Research Fund’s goal to find a cure for brain tumours and to provide educational information so that people could find solace and assistance in making decisions to cope with the diagnosis of a brain tumour.

Fundraising started with memorial donations in Kelly’s name. We then began speaking to service clubs, businesses, church groups, and families who also had lost someone to a brain tumour. Dr. Del Maestro diligently searched for the answers to so many questions – what causes tumours in the brain, their growth patterns, why some types spread and others remained localized.

Steve Northey, Pam Del Maestro and Dr Rolando Del MaestroPam and a dedicated group of volunteer health care professionals, as well as families coping with a brain tumour, pooled their knowledge, and two years later the first Brain Tumour Patient Handbook was complete. The first editions, photocopied, collated and bound by volunteer hands, were circulated to the hospitals and patients in the London area, and just as today, were free of charge.

In 1991, we renamed the organization “Brain Tumour Foundation of Canada” to better reflect its purpose and the variety of services, resources and programs being offered across Canada and abroad.

The progress made by the organization to reach the 55,000 Canadians living with the diagnosis of a brain tumour has been astounding.

Brain Tumour Foundation of Canada may have started out with just a handful of volunteers but today there are thousands of people each year who donate their money, time, talent, and compassion to assist the organization in its mission. I will forever be grateful to all of these individuals.

I ask you to join us as ambassadors to inform all Canadians of the organization and its resources as we continue on our journey to find a cure for brain tumours.


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