New trust to focus on brain tumours

A trust that aims to support patients with brain tumours and educate medical practitioners about how to spot the symptoms of the potentially fatal illness is about to launch in Dunedin.

The New Zealand Brain Tumour Trust had brought together a range of people who had personal experience of the condition, through either a family member or close friend, trust secretary Noelyn Hung said.

"Tumours affect every age, from the very young to the very old," she said.

"The people affected in middle age in particular are people who are vibrant, lively, getting ahead with young families and careers, and they are suddenly struck down by this disease, which can have appalling and tragic consequences."

A group of Otago researchers had been investigating brain tumours for some years but had struggled to attract funding, Dr Hung said.

The trust hoped it could be a vehicle to attract more attention to a field where scientists were making significant progress.

"There is work here in Dunedin which is on the cutting edge, and we want to support that ... we want to support clinical trials as well," Dr Hung said.

"We will become national through our contacts with other neurosurgery units around the country, and we are newly affiliated with the brain tumour charity in the UK."

NZBTT trustees include medical researchers Janice Royds and Latika Samalia and Dunedin Hospital neurosurgeon Ahmad Taha.

Chairman Chris Medlicott said trustees had been working quietly behind the scenes to get the organisation to the point of its public launch.

It had two core aims: the relief of suffering of patients and family, and supporting brain tumour education and research.

"What interests me personally, apart from an interest in supporting good works, is that I have had friends and neighbours who have been afflicted by these things."

One friend in particular was dead within a week after a diagnosis of an inoperable brain tumour.

"I felt people like him just didn't have anything like the support that they should have, so when I was approached about the trust that motivated me."

The more recent plights of a neighbour, who died, and a friend who survived after a brain tumour was found, provided more impetus to getting the trust up and working, Mr Medlicott said.

"We see a very specific and particular need around a wide range of diseases for which the support really isn't there," he said.

"Tumours can affect any person of any age and can have so many different sorts of presentation, but they all involve an invasion of the brain, and that makes life exceedingly difficult."

The trust will be launched with a fundraising event in Dunedin on September 13, which will be attended by Health Minister David Clark.

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