THEIR mission was born out of a desperate desire to find answers and offer hope, and now Mark and Kirralee Hughes' "pipedream" is becoming a reality with the establishment of a $25 million brain cancer centre in Newcastle.
Thanks to a partnership between the Mark Hughes Foundation (MHF) and the University of Newcastle, the "game-changing" research centre will focus on finding better treatments and improving outcomes for brain cancer patients.
The announcement today comes as the sixth annual NRL Beanie for Brain Cancer Round launches this week, which MHF hopes will bring their fundraising total since 2014 into the realm of about $28 million.
"When Mark was first diagnosed, I literally felt sick when I first Googled brain cancer statistics. It was horrific," Kirralee Hughes said.
"We wanted to do something about it, and thought we'd try selling beanies to raise money because brain cancer was so under-funded and under-researched."
That first year they raised $30,000.
"We were absolutely over the moon with our first little beanie campaign," she said.
"We were actually phoning schools around the Hunter, asking, 'Can we send you a pack?'"
Now - inspired by personal experience, built on beanies, and driven by the blood, sweat and tears of an "army" of passionate supporters and volunteers - The Mark Hughes Foundation Centre for Brain Cancer Research will strive to change the narrative so that a brain cancer diagnosis is no longer met with more questions than answers, but hope.
"It is very exciting and it's a huge, huge, boost for brain cancer," former Newcastle Knights player Mark Hughes said.
"And I am very proud that this world class facility, with a world class team, will be happening right here in Newcastle - in our hometown."
Professor Michael Fay will join the University of Newcastle as the Foundation MHF Chair in Brain Cancer and Director of Mark Hughes Foundation Centre for Brain Cancer Research. Professor Fay is highly experienced in medical and radiation oncology and boasts an excellent track record in brain cancer research.
"The fight against brain cancer is an urgent one and the establishment of a dedicated brain cancer research centre further cements our commitment to helping solve this devastating disease. My ambition is to advance brain cancer research and achieve the greatest impact for brain cancer patients and their families," Professor Fay said.
Hughes said it was always their dream to establish a dedicated research centre, but from his own brain cancer experience, he knew there were some other priorities that needed to be tackled first.
"We needed to establish brain cancer care nurses straight away - because families and patients needed that, and Kirralee and I knew that from our own experience that it had to happen yesterday," Hughes said.
"We also know that the clock is ticking for so many people with brain cancer, so we rushed in, and we started lots of different research projects and innovation grants right around Australia, because we know that this is a hard nut to crack."
Each year, about 1800 Australians are diagnosed with brain cancer and 1500 die.
For Hughes, it "doesn't get much more personal".
"I'm stuck with a disease and I need an answer, so I'm doing everything I can for myself - and so many others out there - that need answers too," he said.
The centre will be based in an existing space at the University of Newcastle, but will bring together a national network of experts in the field.
"This is literally a dream in itself that we have got this far, but we will just keep pushing the barriers and ultimately, if we can get some government funding and some philanthropic investments, it would be great to have a stand-alone building for the centre one day," Kirralee said.
"With the army of supporters we've got, nothing is impossible... I remember saying to them at Newcastle uni - 'Tell me how much it is going to take to build this centre, because I just know that we will get there'... It doesn't scare me.
"What scares me is not having better treatments for brain cancer."
The partnership between MHF and the University of Newcastle was established in 2021 with MHF making a $7.5 million five-year philanthropic commitment to establish a dedicated research team led.
Now MHF has committed a further $7.5 million to establish the centre, with the university "fast tracking" brain cancer research with its contribution of $10 million.
In establishing the centre, the university will continue to work in partnership with colleagues at Hunter Medical Research Institute and the local health district.
The team that will lead it is still being established, but University of Newcastle Vice-Chancellor Professor Alex Zelinsky said centre researchers were already working hard to find a cure for brain cancer.
"The fight against this disease is an urgent one and the establishment of a dedicated brain cancer research centre further cements our commitment to helping solve brain cancer," Professor Zelinsky said.
"We are extremely proud that with ongoing support for the mission of the Mark Hughes Foundation, we can now realise the vision of establishing a world-leading centre in brain cancer research and education."
