Online community offers support amid brain cancer journey


There’s an extra level of pressure for those who are caring for a person with brain cancer.

Staying strong and supportive for your loved one can take its own toll – and it’s hard to ask for help when you know that they are going through such a tough time.

However, a pilot of a new online portal is underway in a bid to provide a supportive community for people sharing the brain cancer journey with a loved one. 

The MHF Breathing Space app offers a safe space for families and friends of people living with brain cancer through a unique combination of support and guidance via a community of mental health professionals and people with lived experience of brain cancer.

It has been developed by mental health researchers at the University of Newcastle and Hunter Medical Research Institute (HMRI), with the support of an innovation grant from the Mark Hughes Foundation (MHF).

“When I was first diagnosed with brain cancer my family was always there for me, but who was there for them?” MHF co-founder, Mark Hughes, says.

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

“If someone feels overwhelmed they can just go into their room, close the door and privately access the support they need via the app.

“People feel connected to the Mark Hughes Foundation as we’re a real community.

“So, I’m looking forward to Breathing Space being a valuable community space for people to find the help and support they need whenever they need it.”

The app is part of a larger research project being conducted by a team of mental health researchers to help develop a tailored online program to offer support information and strategies for coping.

As such, the research team will also be conducting a phone and online survey to find out how families and friends are impacted by a loved one’s brain cancer diagnosis.

They will speak with health and medical professionals, as well as people diagnosed with brain cancer.

“We know that the wellbeing of friends and family members is closely tied to the experience of the person with brain cancer,” project lead, Professor Frances Kay-Lambkin, says.

“Healthy carers, who are socially connected and meeting their own needs, are better placed to support their loved one with brain cancer.”