The Meagan Bebenek Foundation is a non-profit organization created to raise awareness and funds for pediatric brain tumour research, to foster hope and improve outcomes for affected children and their families. We spoke with Founder Denise Bebenek to learn more about what they do and ways to help.
Describe your charity/non-profit/volunteer work in a few sentences.
The Meagan Bebenek Foundation is driven by a vision of a world where no children and their families suffer from brain tumours. Our mission is to raise awareness and funds for pediatric brain tumour research, to foster hope and improve outcomes for affected children and their families.
From our annual walk on the Saturday of Mother’s Day weekend that culminates with thousands of participants joining hands to encircle the Hospital for Sick Children in the only human hug of its kind in the world, to our school program, international Neuro-oncology Fellowship and more, the Meagan Bebenek Foundation is making an indelible mark on pediatric health care.
What problem does it aim to solve?
Brain tumours are the leading cause of cancer-related deaths in children and young people under the age of 20. Despite Canada being a leader in pediatric brain tumour research, childhood cancer is consistently underfunded, accounting for only 5% of cancer research funding. Our goal is to translate research observations into tangible benefits for our children who are affected by brain tumours.
When did you start/join it?
I founded Meagan’s HUG in 2001 after losing my 5-year-old daughter Meagan to an inoperable brain tumour.
What made you want to get involved?
When I left the hospital after Meagan passed away, I knew I had to do something to help other children who faced serious health challenges. After delving into the research, speaking with doctors and learning more, specifically about the malignant brain tumour Diffuse Intrinsic Pontine Glioma – which is what Meagan was diagnosed with, I realized there was a lack of funding for research which drove me to further explore what could be done.
I also knew that no family should have to walk this path alone. So, from my dining room table, my dream of creating a human hug to spread a message of hope and help raise funds for research began to take shape and the Meagan Bebenek Foundation was born.
What was the situation like when you started?
At the time Meagan was diagnosed, we knew nothing about brain tumours and how they affected children, let alone that they were the leading cause of cancer-related death in children.
Twenty years ago, information was not readily accessible, and we did not know others who were in the same situation – it was a very lonely experience. It was because of Meagan and the diagnosis that I knew something had to be done. I asked friends and family to help me with what would become the first Meagan Bebenek Foundation Walk and HUG event. Families like mine- they too were alone and being with others who know and understand your struggles breaks the isolation. We like to say “Together we HUG”- but we also say, “Together we are stronger”. That was something powerful that happened at the first foundation event in 2001.
Making a community of hope was new, and a big step forward. Finding a community to talk to, who understood the fears, the helpless feeling and who wanted to join with me and make things happen that could make the odds more favourable for our children was a breakthrough.
I think the other thing that was different in 2000/2001 was the silence around brain tumours and kids. It was a shock for us to learn about the seriousness and frequency of brain tumours. I knew that had to change.
Also, the Brain Tumour Research Centre right here in Toronto was relatively small with a handful of principal investigators, and now it is quite different. It has become one of the leading brain tumour research centres in the world with well over 100 professionals now working on this research.
How has it changed since?
The Meagan Bebenek Foundation is pleased to be celebrating its 22nd anniversary in 2023. We have raised almost $6 million dollars for pediatric brain tumour research and are recognized for our significant and ongoing support of the Brain Tumour Research Centre, the only facility in Canada with a program dedicated to pediatric brain tumour research.
The Foundation has made a mark on pediatric health care, improving outcomes, quality of life, and survival rates for children and young people with brain tumours. We fund seed research projects, purchase cutting-edge equipment and provide ongoing funding of the Toronto Brain Tumour Network tissue bank. This includes a recent world-first clinical trial that successfully delivered chemotherapy to a pediatric brain tumour patient using MRI-guided focused ultrasound with seed funding contributed from our foundation.
We have also made a global impact with the Neuro-oncology Fellowship Program. Each year the Meagan Bebenek Foundation fully funds the Fellowship where oncology doctors from anywhere in the world can come to Toronto to work with the “best of the best” on the clinical and research side. Many have stayed longer than a year, securing funds from other sources to help carry on their research work.
When each Fellow returns home, he/she shares the wealth of knowledge, ensuring that colleagues can learn from their experience and skills. I am most proud of this program – it is a jewel.
What more needs to be done?
This is a big question. We foster a world of culture and discovery…and more knowledge leads to a lot of great things that have provided answers and improved the outcomes. But it also leads to an understanding that there is much to be learned still, seeking better understanding so that every brain tumour, though perhaps a challenge, ultimately can be met with a resolution. I recall Dr. James Rutka, Director of the Brain Tumour Research Centre, saying he dreams of the day when he sits down with a family and can say, “Yes, your child has a brain tumour, and this is what we can do to fix it.”
Also, we can shape care here in Toronto, but what we can do is powerful, as we make a difference nationally and internationally. Living in this city we have access to some of the most advanced care and treatment in the world – but for a family travelling from more remote and distant locations, having an ill child can have a devastating impact.
The world needs hope – and community can achieve so much when we all join together. And we need to make brain tumours a thing of the past.
How can our readers help?
We invite your readers to visit us to learn more about the foundation, our brave Meagan Bebenek Foundation Heroes, our programs, volunteer opportunities and how to donate. We run programs all year-round including donation and community fundraising programs, our amazing school program Kids Helping Kids and annual events.
Do you have any events coming up?
We do! On Saturday, May 13, 2023, we will be hosting our signature walk and hug event to come together in a message of hope for a 5km walk through the streets of Toronto. The walk culminates at The Hospital for Sick Children (SickKids) where participants join hands in a human hug around the hospital. For more information on the event and to participate, visit our website.
Where can we follow you?
Website | Instagram | Twitter | Facebook
PAY IT FORWARD: What is an awesome local charity that you love?
I love Covenant House as they are doing such important work serving vulnerable youth who are homeless, trafficked or at risk.
