Every year in Australia the equivalent of a classroom full of children dies from this terrible disease.

As chair of a Senate Select Committee inquiring into cancers with low survival rates, I have heard from parents with young children who have died from brain cancer, or who face the prospect of dying at a young age.

Their stories are heartbreaking, and they are desperate for answers — and action. A parent is willing to do anything for their child, even lay down their life, and I cannot begin to imagine the horror experienced by a parent watching their son or daughter dying and feeling powerless to help.

One of the hardest questions they have to answer is: “Am I going to die?”

I know what it is like to face the fear and uncertainty that comes with a brain cancer diagnosis. When I was diagnosed with two brain tumours, which were successfully removed, I was told there was a very real prospect I could have died or been left in a vegetative state following my surgery.

I consider myself incredibly lucky. The prospects are quite grim.

Only 22 per cent of brain cancer patients survive more than five years after diagnosis, and many who survive have to confront the fear their cancer might return.

Not only is the survival rate low, it remains roughly the same as it was three decades ago. It gets even worse for people diagnosed with the most aggressive forms, such as gioblastoma, which kills all but around 10 per cent of patients.

Compare this to paediatric leukaemia. Fifty years ago, nine out of 10 children died. Through fundraising and research, this has been reversed and nine out of 10 children now survive.

Brain cancer until recently received less than 5 per cent of Commonwealth cancer research funding, and its share had been declining.

The announcement that the Federal Government, Cure Brain Cancer Foundation and others will establish a $100 million fund, the Australian Brain Cancer Mission, that aims to double the survival rate within a decade is welcome news.

This announcement would not have happened without the effort of Australians who have not only been advocating for an increase in government funding but working hard to raise private funds.

Half will be contributed by philanthropic organisations, including $20 million from the Cure Brain Cancer Foundation, of which I am an ambassador.

I take some pride in knowing I have contributed to this outcome through years of advocacy. For the nine years I have been campaigning I have felt like a lone voice in Parliament.

As well as campaigning for government funding, I have organised events which have raised more than $100,000.

Each year I organise a fundraising walk for Cure Brain Cancer Foundation, the largest dedicated charity for brain cancer research.

The fourth annual Walk4BrainCancer Tasmania is at Dru Point Bicentennial Park at Margate on Sunday.

As well as the 2km inspirational walk along the banks of North West Bay, there will be a sausage sizzle, raffle, live music and a memorial service.

Last year’s walk had more than 300 registered walkers and raised more than $44,000.

This disease has taken so many lives and affected so many people. So many people I speak to have a story about a friend, colleague or family member affected.

While I and others in the brain cancer community are excited about the funding announcement, we are well aware there is much more to be done.

Register for Walk4BrainCancer at walk4braincancer.com.au/events/79/w4bc-tasmania-2017

Tasmanian Labor Senator Catryna Bilyk is a brain cancer survivor and chair of the Senate Select Committee into Funding for Research into Cancers with Low Survival Rates.