Hunter cyclists set to wrap up charity run for brain cancer

 BY ANGIE DAVIES 

A group of Hunter locals will finish a 900 kilometre bike ride from Brisbane to Newcastle this weekend as part of a RUN DIPG fundraiser. 

Lucas, John and Odin will be joined by around 50 riders, promoting the need for vital funding into childhood brain cancer, particularly Diffuse Intrinsic Pontine Giloma (DIPG). 

DIPG is the deadliest form of childhood cancer and there is currently no effective treatment available. 

RUN DIPG founder, Associate Professor Matt Dun, from the University of Newcastle and Hunter Medical Research Institute, says there is still a long way to come with finding a cure. 

"DIPG equates to 1 in 5 childhood deaths each year. Medical research hasn't advanced in 60 years of modern medicine, this means we are still in the very much in the first step of finding opportunities for these patients and families as they are diagnosed with DIPG," he said. 

The final leg of the bike ride will end at the Hunter Medical  Research Institute this Sunday. The riders have stopped at many east coast towns during the journey, with extra kilometres added on due to the current challenging weather conditions. 

Associate Professor Matt Dunn says the team initially set out to raise $40,000, however have now exceeded this.

"We're please to say we actually cam second in the Gold Coast Marathon, so that raised over $60,000 for research," he said. 

University of Newcastle Announces New Brain Cancer Research Centre

BY OLIVIA DILLON

The University of Newcastle is taking a step towards finding a cure for brain cancer, with the announcement of a new research centre. 

The Mark Hughes Foundation Centre for Brain Cancer Research builds on the existing partnership between the Mark Hughes Foundation (MHF) and the University, with MHF having now committed over $15 million over five years to establish a dedicated research team and centre. 

A $10 million contribution from the University makes the centre a $25 million philanthropic investment. 

Bringing in colleagues from HMRI and the local heath district, as well as a national network of experts in the field, the centre will drive critical research, education, and health care improvements for brain cancer patients across the country, as well as their families and carers, and heath professionals. 

Professor Michael Fay will join the University as the MHF Foundation Chair in Brain Cancer and as Director of the Mark Hughes Foundation Centre for Brain Cancer Research, bringing with him extensive experience in brain cancer research and medical and radiation oncology. 

He said his team of researchers has already begun work to improve outcomes for brain cancer patients.

"There's a whole lot of different streams of research being done at the moment, for instance, developing new tests and new types of imaging for brain cancer. We want to translate these into patients as quickly as we can, so, take them out of the laboratory and into the clinical arena where we hope they can be used for patient benefit," Professor Fay said. 

"The problem with high-grade brain cancer, or glioblastoma, is that the outlook hasn't really changed in 20 years. Lots of things have been tried- chemotherapy was brought in during the early 2000's- but things really haven't improved much and for a lot of these patients, the outcomes are really poor."

A previous recipient of the MHF HMRI Clinical Research Fellowship, Professor Fay said the Foundation's commitment to the cause was inspiring.  

"I'm just delighted by the ongoing support from the Foundation and I think all of the brain cancer researchers locally would feel the same way," he said. 

"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". 

Kirralee Hughes, Mark Hughes, Professor Alex Zelinsky, and Professor Elizabeth Sullivan

Mark Hughes Foundation Joins Forces with Hunter Researchers to Trial Brain Cancer Support Forum

BY TAHLIA HALE

Mental health researchers at the Hunter Medical Research Institute and the University of Newcastle have developed a new online forum to help brain cancer patients and their families and friends find support.

With a grant from the Mark Hughes Foundation (MHF), the MHF Breathing Space app offers cancer patients, friends, and family members a safe space to access support from mental health professionals and people with lived experience of brain cancer.

MHF co-founder Mark Hughes says while his family were a big support when he was diagnosed with brain cancer, he still wondered, "Who was there for them?"

"This app will provide access to a vital online community that families and friends who are going through the brain cancer journey also need," Mr Hughes said.

The trial for MHF Breathing Space is looking to recruit 100 people to join and experience the app so it can be refined ahead of its launch to a wider audience.

The app is just one part of a larger research project from a team of mental health professionals which will help develop an online program to offer support and strategies for coping with the broader affects of brain cancer.

MHF co-founder Kirralee Hughes wants the MHF Breathing Space app to provide a safe and supportive online space for the family and friends of people with brain cancer.

"It's a really lonely place when someone's first diagnosed or when they do pass away from brain cancer," Mr Hughes said.

"You sometimes think you're the only person in the world that it going through what you're going through."

Breathing Space has already been trialed over the past month with people of the brain cancer community, some who have lost someone and some who are carers of those recently diagnosed.

"It's a space where carers can go on, like social media, but its a private site - you have to be a carer for or a family friend of someone diagnosed - where you can just talk about anything," Ms Hughes said.

"You can get on [the forum] and share your feelings, ask questions, and, because its other people who have gone through or are going through the same emotions that you're going through, a lot of people are finding that it helps that they're not the only one going through it."

Breathing Space is available to eligible users via the Apple Store and Google Play.

MHF Co-Founder Mark Hughes.