A LEIGHTON motor neurone disease sufferer is taking part in groundbreaking research into the killer condition.

MND affects the nerve cells in the brain and spinal cord and is a rapidly progressive, devastating disease that can affect any adult at any time. The cause is unknown and there is no cure.

But new research being carried out by Dr Martin Turner, a consultant at the John Radcliffe Hospital, Oxford, could help future sufferers by speeding diagnosis and improving drug treatment.

Ed Burns, of Grove Road, is one of 70 sufferers taking part in the trial. He was diagnosed in 2008 – six years after displaying early symptoms.

As the disease took hold, he lost the ability to talk and swallow and is fed through a tube at night while he sleeps. He communicates using email or pen and paper.

"I started slurring my words and my wife Sheila accused me of being drunk, but I suspected something was seriously wrong," he told the LBO.
His illness means he has been forced to give up many of the hobbies and pastimes he has enjoyed since retiring in 1989, but still enjoys a round at the Aylesbury Vale Golf Club.

Incredibly, he has also retained his sense of humour.
He revealed: "Sheila was going to look after me, but she had a major stroke and now I look after her.

"It is hard work, but we agreed not to go into a home and we have a care worker come in the mornings to get her up and dressed.
"I cook all her meals, however, and it can be very frustrating smelling all that lovely food and not being able to eat it."

Mr Burns, 76, who worked in the television industry, was also fond of a pint of Guinness before being robbed of that simple pleasure.
"The illness has stopped me enjoying lots of things like DIY and bowls and we can't go on holiday anymore.

"But I am still playing golf when someone can come in and look after Sheila, although I have to use a buggy now.
"My lowest handicap was five, but when the MND got hold of me it was 16.

"Then the club put me on 27 as I can't hit the ball very far and that's when I told Dr Turner I wanted to take part in his research. I have given myself to him to do what he wants, for as long as I am of use."
Dr Turner has been involved in MND research for 10 years and is recognised as a leading expert in the field.

He said: "MND research is being held back by the lack of an early diagnostic test and predictable markers of the progression of the disease – biomarkers.

"Patients still wait too long for a certain diagnosis and clinical trials are hampered by lengthy study times and variability of the disease between people living with MND.

"If MND biomarkers can be identified then they could dramatically improve the speed and accuracy with which MND can be diagnosed, and how future treatments are assessed.

"Biomarkers might be changes visible on research MRI scans, or substances measurable in the blood or spinal fluid.

"The discovery of such biomarkers could change the way that clinical trials are organised, allowing beneficial drugs to be identified more quickly and ineffective drugs to be discounted sooner."

"It is also hoped that biomarker discovery, by speeding up diagnosis, could allow drugs to be given at a much earlier stage, which might improve their effectiveness."

He added: "The study involves an MRI scan of the brain and the safe removal of fluid samples for analysis. In this way the team hopes to build up a large cohort of MND patients that have been carefully followed through their individual disease pathway, providing the best chance for biomarker discovery."

Mr Burns is one of several local MND sufferers supported by the Luton and South Beds MND Association and receives regular support from volunteer visitor Ann Murphy, whose husband died of the disease.
She said: "What Ed and the other patient volunteers are doing is very important and we can't thank them enough."

MND Association research manager, Belinda Cupid, said Dr Turner's research work was "incredibly important".

She said: "His research, which we are funding, aims to identify a predictable MND-specific 'fingerprint' or biomarker which is a unique set of substances or changes on a scan that help identify whether someone has MND.

"Finding a biomarker will enable us to further our understanding of this devastating disease for which there is no cure yet kills five people every day."