Couple's charity drive could lead to cure for disease that killed daughter

But the humble fundraising drive embarked on by Neil and Angela Dickson in the 12 years since the death of their daughter Samantha has helped finance a "major breakthrough" in the battle against the condition that killed her.

For the first time, researchers funded by the Dicksons have pinpointed a rearrangement of DNA present in about two-thirds of cases of the most common brain tumours in young people.

It is hoped the discovery could lead to improved treatments and more accurate diagnoses.

Mrs Dickson said the news marked the fruition of the tireless work she and her husband embarked on months after losing their 16-year-old daughter with a "zest for life".

The modest fundraising efforts began in their Hampshire village, and they now preside over a charitable trust that is the largest funder of brain tumour research in Britain.

"I feel that our dedication is finally coming to fruition," Mrs Dickson said yesterday. "When Samantha was diagnosed, the prospect of a cure wasn't on the horizon, but I hope I will be able to see it happen in my lifetime."

Samantha died 12 years ago yesterday, six days short of her 17th birthday. At her funeral, her parents appealed for donations, not flowers, intending to pass 10,000 on to a worthwhile cause devoted to researching brain tumours.

When they discovered few such organisations existed, they took matters into their own hands, and set up the Samantha Dickson Brain Tumour Trust.

The charitable drive started on a small scale, based in an office above the couple's garage. But such was the extent of Samantha's social network – she was a member of several sports, arts and dance groups in her home village of Dogmersfield – those efforts increased.

Having initially hoped to fund four research projects over the trust's first three years, the Dicksons, who work full-time in unpaid positions, financed six in its first 12 months.

Now, such is the magnitude of the trust, it will have funded 1.5 million of research this year. The projects are selected by its own scientific and medical advisory board, who heed the advice of more than 100 neurology specialists the world over, including eminent Scots researchers such as Professor Roy Rampling, from the University of Glasgow. Its patrons include Scots sports stars Stephen Hendry and Sandy Lyle.

The latest research, carried out at Cambridge University, has identified a unique DNA make-up in the majority of brain tumour cases involving people aged five to 19.

The new study was given 147,000 by the Samantha Dickson Brain Tumour Trust, with other funding coming from Cancer Research UK.

Professor Peter Collins, who led the research, said: "If we can diagnose exactly which type of brain tumour a child has as early as possible, the tumour is more likely to be treated successfully. This is the first time a specific genetic link has been made to the majority of pilocytic astrocytomas.

"We found a specific rearrangement of DNA in around two-thirds of all cases. The resulting DNA sequence includes a portion of a gene called BRAF that is known to be mutated in a number of other cancers, and which we think may trigger this disease."

Dr Lesley Walker, the director of cancer information at Cancer Research UK, said: "We think this important finding will be vital in guiding future research."

Despite the latest breakthrough, the couple will not curb their efforts to eradicate the disease.

There are several research projects under way at present, and Mrs Dickson said one of their next goals was to establish a PhD student fellowship at the University of Edinburgh to encourage research in the field of neurology.

The findings are published today in Cancer Research, the journal of the American Association of Cancer Research.

FACT BOX

ABOUT 3,400 people die from brain tumours each year in Britain.

Childhood brain tumours are the second most common type of childhood cancers, affecting about 145 children each year in the UK. About a quarter cannot be successfully treated.

Brain tumours cannot be prevented because their cause is unknown. No changes in lifestyle have been shown to reduce the risk.

If left untreated, the average life expectancy of an adult diagnosed with a malignant brain tumour is three months.