Kelly Northey’s smile was infectious, and her boundless energy touched every person she met in her short lifetime. Kelly was 8 years old when she was diagnosed with a brain tumour—the year was 1981, when there was little organized support or specific research into brain tumours being conducted, which often left patients diagnosed with a brain tumour to struggle alone with the physical and emotional effects of the disease.
In January of 1982, after a six-month struggle, Kelly succumbed to the disease, but her legacy was to live on with the creation of Brain Tumour Foundation of Canada, says Shannon LaHay, CEO of Brain Tumour Foundation of Canada. Kelly’s father, Steve Northey, Dr. Rolando Del Maestro—a neurosurgeon who was working on a brain research laboratory at the time—and his wife, Pamela, a neuroscience nurse, met around a kitchen table shortly after Kelly’s death to create a resource to aid families in a similar situation. Forty years later, Kelly continues to touch Canadians’ lives every day, through the advocacy, research, information, support, and education provided by Brain Tumour Foundation of Canada.
Supporting Canadians
Every day, 27 Canadians are diagnosed with a brain tumour, and an estimated 55,000 Canadians are currently surviving with a brain tumour. Brain Tumour Foundation of Canada is the only national organization that supports the needs of Canadians affected by both malignant and non-malignant brain tumours. This includes over 120 types of primary brain and central nervous system (CNS) tumours, which makes effective treatment very complicated. Of course, for each patient diagnosed with a brain tumour, there is a larger support network that is also affected—family, friends, and caretakers.
“When we have a safe space to share our difficulties, our worries, our celebrations, this type of sharing, or storytelling, can often bring a sense of meaning, purpose, or understanding to these experiences,” shared LaHay. “This can be especially true to those who have been impacted by a brain tumour diagnosis. Hope can mean many different things depending on the diagnosis and on the individual. There will always be challenges when facing a brain tumour diagnosis, but if we can face these challenges together, we can create a community of strength and support, a community who will listen, who will offer compassion and kindness, and we will continue to hope that one day we find a cure and an end to brain tumours.”
Making Advancements
Since its inception, Brain Tumour Foundation of Canada (BTFC) has raised nearly $10 million in direct funding to research, says LaHay. The impact of research funded by Brain Tumour Foundation of Canada is undeniable. It has helped improve the accuracy of radiation treatments, shorten treatment regimen times, limit side effects from chemo, and improve quality of life for patients after surgery. BTFC is also the sole funder of the first Brain Tumour Tissue Bank in Canada, providing free samples to clinical researchers around the world to further the search for a cure.
In 2019, BTFC launch the national Brain Tumour Registry of Canada alongside Dr. Faith Davis, a brain tumour epidemiologist at the University of Alberta and current vice-chair of BTFC Board of Directors. This is a first-of-its-kind registry providing exclusively Canadian data on both malignant and non-malignant tumours, to better understand prevalence and survival rates for brain tumours, and get a better picture on who is affected, and possible causes. The new 2021 Incidence and Mortality Report is the most thorough report of its kind in Canada.
“One of our recent advocacy efforts resulted in the delay of the discontinuation in Canada of a key chemotherapy drug, lomustine (CCNU), that is often used to treat glioblastoma,” says LaHay. “Following our outreach and advocacy letter, representatives of BTFC were able to meet with representatives from the drug manufacturer, Bristol Myers Squibb, who indicated an extension of nearly two years from the original date announced to discontinue the supply and distribution of lomustine in Canada. Our efforts on this issue are not yet complete, as we continue to work towards a long-term solution for patients.”
This year, as Brain Tumour Foundation of Canada celebrates 40 years of hope, BTFC reached another milestone in providing much-needed support and resources to the brain tumour community, says LaHay. With the support of its funding partner, the Adam Fanaki Brain Fund, BTFC launched a first of its kind App, available through the Apple and Google App stores. Until now, the handbooks have only been made available in hard copy or as a PDF. This valuable information is now available on your phone or tablet, either as a PDF, or as an accessible version, where you can increase the size of the text, highlight text, make notes, skip ahead to another section, or even share key points of the text with others. “This is an example of how we continue to work to support and meet the needs of the brain tumour community as we look ahead,” says LaHay
Volunteer Supported
BTFC is a completely donor-funded organization; Funds are raised through sponsorships, partnerships, and the generous donations of individuals, businesses, foundations, and special events.
“BTFC also has a dedicated team of healthcare professionals and volunteers supporting us towards our common goal to end brain tumours,” says LaHay. “Our healthcare professionals act as ambassadors, support research efforts, and provide a connection to patients, survivors, and caregivers so that they can receive the support and resources that they need.
Its volunteer base is a key resource for BTFC. Its volunteer Board of Directors and Committees are filled with a variety of professionals who provide governance and oversight as well as experience and expertise in policy, finance, marketing, law, industry, healthcare, and government. “This breadth of experience and expertise is invaluable to advancing the work of Brain Tumour Foundation of Canada,” says LaHay.
Getting Involved
October 24, 2022 marks the 5th annual Brain Cancer Awareness Day in Canada. “On that day, we hope to make people aware of the devastation of this disease, but also want to share that there is HOPE! We are once again running our Hats for Hope campaign to raise awareness and share the hope that exists within our community.”
LaHay says everyone at BTFC is also grateful for the continued support of Bruce Power who has provided a $100,000 matching gift in honour of BTFC’s 40th Anniversary. Every donation that is made to the Power of Hope Campaign will have double the impact as Bruce Power matches each gift. In addition to doubling the donations, BTFC is also able to share beautiful tributes, Stories of the Power of Hope, that recognize the reasons why donors give.
With the impact of the pandemic over the last few years, as we look ahead, we continue to focus on how to engage and connect with our community. Using social media and virtual events has helped us to reach so many more people across Canada, but we are looking forward to being able to connect in-person again when it is safe to do so, says LaHay. The Brain Tumour Walk is an opportunity to come together across Canada to celebrate and remember. “We walk with a united goal—to see an end to brain tumours. We are hopeful that the 2023 Walk Season will return as a hybrid event to incorporate the best of virtual and in-person events and engage as much of our community as possible.”
The sense of community is critical to the work of Brain Tumour Foundation of Canada, LaHay shares “We do not heal in isolation; we heal in relationships. By creating a community that facilitates connection, individuals have the opportunity to share their lived experience with others.” In their 40th year, Brain Tumour Foundation of Canada is celebrating their past, thankful for the present, and looking forward to the future with hope.
Volunteer opportunities exist throughout BTFC. Those interested in joining the BTFC team or donate to the foundation are welcomed to visit
www.braintumour.ca
