Denise Bebenek and The Circle of Hope: Leading the Fight Against Pediatric Brain Tumors

ADMIRED WOMEN

IN BUSINESS

2021

A little-known fact for the non-science or non-medical community is that brain tumors are the leading cause of cancer-related death in children and youth under the age of 20. Only those who have had a close encounter with someone who has been affected by a brain tumor diagnosis, or perhaps lost a young loved one to a pediatric brain tumor, can truly understand the devastating impact caused by this illness.

One such story that evolved into a national campaign for spreading awareness and for raising funds for brain tumor research is that of Toronto, Ontario-based Meagan’s HUG. Established in 2001 and spearheaded by Denise Bebenek, Meagan’s HUG shares a message of hope and increases awareness about pediatric brain tumors while raising valuable financial resources for medical research.

The start of Meagan’s HUG
Meagan’s HUG, previously known as Meagan’s Walk: Creating a Circle of Hope, was created when Denise’s child, Meagan, was diagnosed with an inoperable and malignant brain tumor at the young age of 4. Although there wasn't a lot that the doctors could do at the time, her friends and community rallied around her. Meagan passed away 6 months after her diagnosis. It was during this six month time span that Denise first witnessed the true power of community and togetherness.

Twenty years later and now a registered charity, Meagan’s HUG has created and led a path to harness the power of community and to raise awareness and funds for pediatric brain tumor research to foster hope and improve outcomes for affected children and their families.

“Our goal is to make brain tumors manageable, treatable, to find a cure, so that no child, no family suffers,”
Denise Bebenek-Founder, Meagan’s HUG

Denise runs community-based, charity events all year round. The Meagan’s HUG signature event takes place every year on the Saturday of Mother’s Day weekend. Thousands of participants of all abilities take part in this 5-kilometer walk that leads up to a children’s hospital where the participants hold hands and encircle the hospital, in effect hugging the entire hospital.

Denise explains how the organization has become best known for its HUG around the Hospital for Sick Children in Toronto (SickKids). “This ‘HUG’ has become the ‘signature’ for Meagan’s HUG, and has, over the years, attracted significant media attention.”

Meagan’s HUG has now raised close to $6 million for pediatric brain tumor research through SickKids Foundation. These funds are shared, supporting various seed projects for research at the world renowned Brain Tumor Research Centre, with a focus on identifying improved treatments and therapies for treating brain tumors; and the Meagan Bebenek Endowment Fund which fully supports the Meagan’s HUG Neuro-oncology Fellowship, whereby a clinician-researcher comes to SickKids annually. These clinician-researchers are from different parts of the world and bring with them their own expertise and experience based input in the field of pediatric brain tumors, to work aiding and assisting clinicians and researchers in Canada, with all benefitting from their shared knowledge and collaborative work experience.

Finding the fix to an unfixable
Through Meagan’s HUG, a symbol of hope, Denise has been able to bring together families living with a brain tumor diagnosis, and those who have lost a child and are living with the aftermath. The organization today has become a common ground for affected individuals and families to share stories, not just about family struggles and losses, but also about the battles of researchers and healthcare workers, who have to do everything in their power to try and treat a challenging illness which is sometimes an untreatable ailment.

“Meagan’s HUG also prides itself on its embrace of the ‘bench to bedside’” philosophy of the Brain Tumor Research Centre (BTRC) at SickKids,” says Denise. Ultimately, it is all about what’s best for the child. Care-giving professionals and researchers work to find the more effective and less–toxic treatments, allowing the young patients and their families to have the benefit of improved therapies, better quality of life.

With a firm belief that everyone can make a difference, Meagan’s HUG also hosts its “Kids Helping Kids” school program. With the premise that every school has a “Meagan”, Denise also has a firm belief that everyone, regardless of age, can make a difference. Through the Kids Helping Kids program, Meagan’s HUG encourages students to be leaders and create a generous example by reaching out and offering a helping hand to their “Meagans”. Denise and the Meagan’s HUG school team can be found visiting schools and addressing kids, working to encourage compassion and friendliness in young students so that they too grow up to be generous and socially aware individuals.

Meagan’s HUG has provided significant support for important research, funded purchases of cutting-edge equipment, and provides ongoing funding for the Toronto Brain Tumor Network tissue bank.

The annual Meagan’s HUG fundraiser has been going on for the last 20 years and it continues to go strong. Denise shares that “The HUG, especially perhaps for the families who have felt the direct impact of a life-altering diagnosis, has become a tradition, a necessary part of their lives and their calendars.” The organization work force relies heavily on a dedicated corp of volunteers, some of whom have stood with Denise and the Meagan’s HUG cause since day one.

Over the years Meagan’s HUG has evolved, gained a lot of attention, and influenced many lives. Despite the success, Denise strives to keep the organization and its agenda true to its roots. “It’s all about the kids,” she says, “and making life better for them.” She has also been instrumental in educating the community, drawing attention to pediatric brain tumors, and the need for, and the gains that can be made with, effective life-changing research. “Given the nature of Meagan’s HUG, I feel the mission is to be a voice, to take action in the face of a health challenge that fills people with fear and loss of hope,” says Denise.

A mom, a global symbol
When Denise first started planning the first Meagan’s Walk event, it was due to the loss of her daughter. After losing Meagan, Denise had a vision, a vision without limits, and a vision for all. She remembers that when organizing thefirst-ever walk, some city officials thought of her as just a grieving mom trying to seek closure. Denise continued to apply for permits and finally received the go-ahead for her walk. Despite appalling weather, that day more than 800 people participated in that first walk and HUG event.

Denise has been honoured with several awards in her career due to her selfless service to the cause and the community. She had received The Women’s Executive Top 100 Most Powerful Women Awards earlier on in her career and recently was the recipient of the prestigious June Callwood Award for Outstanding Voluntarism as well as the Queen Elizabeth Award. She continues to grow her business and voice and has inspired thousands of women to stand up, create and pursue their own goals and dreams. She continues to speak at schools and other organizations and finds gratification when people get inspired to “do more” and “give back”.

“My legacy? That brain tumors will no longer be the terrible threat they are to our children now,”
Denise Bebenek-Founder, Meagan’s HUG.

As founder and President of the Meagan’s HUG organization for the last 20 years, Denise has established herself not just as a caring mom, but also as a strong, dedicated, and unfazed entrepreneur with a clear goal and the ability to break barriers. Before starting Meagan’s HUG, Denise used to be a primary school teacher and had to push her limits and learn all sorts of business-related skills, sometimes out of her experience and comfort zone, to become the voice that she is today, for Meagan’s HUG and other families. Today she is well-respected and looked up to as a community leader, contributor to and supporter of the medical research field. She works to keep the mission of the organization intact and stays focused on what she has done well to keep the momentum of the charity strong.

Denise is now on the track to expand the signature Walk and HUG to other cities in Canada. Over the next few years, Meagan’s HUG will be seeking and partneringwith like-minded organizations to spread awareness and educate the general public about the dangers of pediatric brain tumors, and the need for life-changing research.

“As a volunteer-driven organization, Meagan’s HUG welcomes the talents needed to move the organization forward.” Meagan’s HUG grows stronger in number and financial backing every day and Denise, along with her kids, Matthew and Sarah Grace, continue to be the backbone to the world of research and a symbol of hope to others who struggle with this illness.