First there was shock, then confusion and fear. But within weeks of his brain cancer diagnosis in July 2013 after an avocado-sized tumour was detected, Mark Hughes was defying doctors’ advice. “I was told to worry about myself, to get myself better, but (wife) Kirralee and I knew we had to take action,” the 45-year-old remembers. “Navigating brain cancer is extremely tough, it’s a devastating disease. We found it very difficult – understanding the situation, the type of tumour, the kind of treatments, the outcomes, all those things. We were just lost. We needed help and that was one of the first things that we noticed – the lack of expertise in brain cancer.”

Tackling brain cancer head-on

Mark and Kirralee also discovered that the five-year survival rate is only 22%, significantly lower when compared to other cancer diagnoses such as breast cancer, which is 92%. They also learned that little progress had been made to curb its mortality rate in three decades. Given brain cancer receives less than 5% of Federal Government cancer research funding and is the leading cause of cancer mortality in young Australians – accounting for 18% of all cancer deaths – Mark decided that he wanted to change this. “It breaks your heart,” he says. “You meet families with young children who have brain cancer and they’re supposed to be excited about the next stages of their life. There are 30-year-old men and women (with brain cancer) who’ll never have the chance to start a family.”

<40 Brain cancer kills more Australians under 40 than any other cancer
2 in 10 Only 2 in 10 people diagnosed with brain cancer will survive at least 5 years
1,500 Approximately 1,500 Australians die of brain cancer each year
<5% Brain cancer receives less than 5% of all federal government cancer research funding

It became impossible for Mark to simply focus on his own recovery and with the same determination the two-time premiership winner demonstrated on the football field, he began planning a way to help others. Within a few months of the father-of-three’s surgery to remove the high-grade tumour and with the help of some “amazing” family and friends, the Mark Hughes Foundation was launched in early 2014. Since then, the organisation has raised more than $24 million, largely through the NRL’s annual Beanie for Brain Cancer Round. In its fifth year in 2021, $4.1 million was raised from the sale of 160,000 beanies and a $1 million donation by the McCloy Family Foundation.

We’re dreaming big, we’re thinking big, because we need big results, and we need them as quickly as possible.

“First and foremost, the Mark Hughes Foundation was born here in the Hunter,” says Mark. “I’m a coalfields boy, this is our heartland, and the support we get here is unbelievable. So many people contribute, whether it’s hosting a (fundraising) morning tea, a bike ride, buying a beanie. The foundation’s grown quickly and we’re now getting some very serious things done.”

A key focus for Mark has been to help others navigate the confusing and stressful path of treatment by funding brain cancer care nurses in the Hunter and throughout regional NSW. “Your hand is held by a Mark Hughes Foundation care nurse who is one familiar face among the procession of medical staff. These nurses go to meetings with you, answer tricky calls from the family, and they always go way above. It’s important to have them by your side when you’re in the trenches with brain cancer.”

The other key area of focus for the Mark Hughes Foundation is research and in 2022 they announced an increased philanthropic commitment to the University of Newcastle of $15 Million over 5 years to establish the Mark Hughes Foundation Centre for Brain Cancer Research. The Centre will intensify Australia’s brain cancer research efforts and allow us to collectively work harder than ever before to bring help and hope to patients and their families.

Led by Professor Michael Fay as the Foundation MHF Chair in Brain Cancer, the Mark Hughes Foundation Centre for Brain Cancer Research will bring together the best experts in the field to drive critical research, education, and health care improvements at a national scale for brain cancer patients, their families and carers, and health professionals. It will also encompass the dedicated research team supported by the Mark Hughes Foundation, with a particular focus on adult brain cancer.

While the focus is national, Mark is committed to ensuring Newcastle leads the way in the effort to cure brain cancer. “The foundation was born here,” he says. “Why can’t we have the world’s best facilities for brain cancer so that anyone in Australia can get treatment and help? We’re dreaming big, we’re thinking big, because we need big results, and we need them as quickly as possible.”

Professor Brian Kelly, Pro Vice-Chancellor of Research & Innovation at the University of Newcastle, says of the partnership: “We want our work to both improve the lives of people with brain cancer straight away and future-proof brain cancer research. Breakthroughs can happen when new perspectives and voices are heard.”

Mark continues to have a scan every four months and feels grateful to be healthy. He has a deeply felt message for those struggling with cancer and their loved ones: “You’re supported, people care, and they really want to help, just know that. Make today count. Do your best today and wake up tomorrow and do it again. There’s real hope out there.”

Did you know?

Each year, about 1,800 Australians are diagnosed with brain cancer and 1,500 die. The five-year survival rate is 22%. This rate has not improved in the past 30 years.

Brain cancer is the leading cause of cancer mortality in young Australians – accounting for 18% of all cancer deaths.

Brain cancers include primary brain tumours, which start in the brain and almost never spread to other parts of the body, and secondary tumours (or metastases), which are caused by cancers that began in another part of the body. There are more than 40 major types of brain tumours, which are grouped into two main types:

  • Benign – slow-growing and unlikely to spread;
  • Malignant – cancerous and able to spread into other parts of the brain or spinal cord.

Brain tumours are usually graded on a scale of one to four, based on how quickly they are growing and their ability to invade nearby tissue: grades one and two are the slowest growing and are called low-grade tumours; grade four is the fastest growing.

Source: Cancer Council and Australian Institute of Health and Welfare (AIHW) Cancer Data in Australia 2021.

Mark Hughes Foundation

Mark Hughes Foundation

Centre for Brain Cancer Research

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