Through the Years

Through the Years

As we mark the 25th Anniversary of the Brain Tumour Foundation of Canada, it is a time of remembrance and reflection. When my eight-year old daughter Kelly Marie died from a brain tumor on January 30, 1982, her mother Carolyn and I were devastated. Her sister Jodi aged 3 ½ and brother Jeff aged 9 months knew little of death but realized the huge void and tremendous sadness in the family.

My way of dealing with this tragic loss was to ensure that Kelly’s death was not in vain. I wanted to do whatever I could so that other families would not have to go through what we had just gone through.

Fortunately, I met two brilliant angels on earth Dr. Rolando Del Maestro was a busy neurosurgeon, and researcher, his wife Pam a neuroscience nurse who were to become my very dear friends. When I approached Dr. Del Maestro to see how I could help, he suggested donations in memory of Kelly could be directed to fund a laboratory that he was initiating to find the cause of brain tumours and other neurological disorders. Right from the beginning the Del Maestro’s passion and dedication was evident. Ironically, out of brainstorming at the Del Maestro’s kitchen table came the Brain Research Fund Foundation of London (lovingly known as "BRF") to raise funds for research and equipment.

Then we identified other needs. When Kelly was diagnosed with a brain tumor, we realized there was very little layperson information for the public. Pam Del Maestro and a team of knowledgeable volunteers, created the Patient Resource Handbook. She always kept us focused on the needs of people with brain tumours and their families to have up-to-date information, to know that they were not alone in their fight, to have hope and support to win the battle.

Pam and her caring volunteers started a support group in London. Now there are seventeen support groups across Canada.

The Brain Tumour Patient Resource Handbook is now distributed worldwide, in both English and French translations and is available on the Internet. As of 2002, through the wonders of technology, no one is alone as the BTFC Virtual Support Centre Web site and chat room provides easily accessible, pertinent information for everyone coping with brain tumors.

To celebrate this 25th Anniversary milestone, our family is compiling the Brain Tumour Foundation of Canada Archives called "Through the Years". The Foundation’s history has been carefully documented in electronic and scrapbook form, in words and pictures, by years and categories highlighting activities and achievements.

The archives trace the growth of the Brain Research Fund Foundation of London from conception at the Del Maestro’s kitchen table, to a boardroom table in 1987, and follows it’s evolution to the nationally recognized Brain Tumour Foundation of Canada of today.

Documented are many significant events including the creation of the Brain Tumor Tissue Bank in 1989 by Dr. Del Maestro to supply researchers throughout the world with specific samples for their studies. Then as one of the founding members of the National Brain Tumor Coalition in 1994, BTFC became active internationally sharing educational information with many like organizations in the United States and Canada.

The many volunteer board members, fundraisers, supporters and staff members who worked diligently to build the Foundation are recognized within these pages and will remain in our hearts forever. Their hard work and commitment is nothing short of incredible. We hope they are proud of their contributions and enjoy reminiscing about their days at "BRF" / BTFC.

I have always looked at the Brain Tumor Foundation of Canada as Kelly’s legacy. However it is not only her legacy but one to be shared by all the researchers, healthcare professionals, and volunteers who have assisted in the compilation of information and given their love and support to those who have faced this devastating disease. It is a legacy for all the children and adults who have valiantly fought brain tumors and lost the battle, and to those who continue to live with brain tumors. It’s a legacy they can all share.

How does one say "Thank You" – to the countless volunteers who have donated time, energy, and money to organize fundraising events, facilitate and convene support groups, write publications, and provide administrative support bringing the organization to this point?

On behalf of Pam, Rollie and myself, I wish to recognize the efforts of the thousands of hardworking volunteers and staff members who have worked so diligently throughout the years. Words cannot express how grateful we are to our families, friends and all those who share our passion and will carry on Kelly’s legacy.

Sincerely,

Steve Northey

The Brain Tumour Foundation of Canada continues in its commitment to:

  • Provide educational information and emotional support to those coping with the diagnosis of a brain tumour.
  • Contribute to joint endeavors through NBTC and other organizations to increase awareness of the problems of brain tumours.
  • Raise funds for patient support systems, research grants and support of the Brain Tumor Tissue Bank to find a cure for brain tumours

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