RUGBY legend Doddie Weir is taking part in the largest ever trial of drugs tackling motor neurone disease (MND).
The former Scotland international has confirmed that he will be involved in a £4m clinical trial which aims to find treatments that can slow, stop or reverse disease progression.
And it has been confirmed his charity My Name'5 Doddie Foundation is also part-funding the project which aims to recruit hundreds of people living with the disease to take part in one of the UK's most comprehensive clinical trials.
Currently, over 400 people in Scotland are living with MND and the trial will be open to almost every person in Scotland with the degenerative condition, which occurs when specialist nerve cells in the brain and spinal cord stop functioning properly.
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"Of course I'm going to be part of the trial and I want to reach out to everyone else who has MND to register for the trial because at the moment there is nothing there on the plate for anyone who has got MND so it's an exciting time ahead," he said.
"It's a great thing to be happening in Scotland and every patient of MND now has a positive step.
"I think 2020 will be an exciting time in the fight against MND."
MND sees muscles waste away after a loss of nerve cells that control movement, speech and breathing and there is no effective treatment or cure.
The platform, MND-SMART, is a UK-wide trial which aims to find treatments that can slow, stop or reverse progression of the terminal disease.
While typical clinical trials focus on a single drug, MND-SMART will allow more than one treatment to be tested at a time, giving patients a higher chance of receiving an active treatment, rather than the placebo.
MND Scotland has invested £1.5 million, half of the charity's annual turnover, to allow the pioneering research it describes as "ground-breaking" to take place.
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The project, which is being led by researchers at the Euan MacDonald Centre for MND Research at the University of Edinburgh, has been developed to find effective medicines more quickly.
Researchers will initially test drugs that are already licensed for use in other conditions to check whether they offer any benefit for people with MND.
It will include as many people with the condition as possible, regardless of how the disease or current treatments affect them.
The first participants in the trial will be seen in Edinburgh with other clinics across the UK joining during 2020.
Dr Suvankar Pal, Neurologist and MND-SMART Co-Investigator, Lawrence Cowan, Chair of MND Scotland and Euan MacDonald, who is living with MND and co-founder of the Euan MacDonald Centre for MND Research
Consultant neurologist Dr Suvankar Pal, who works at Edinburgh University’s Anne Rowling Clinic, which was founded by the author J.K. Rowling in memory of her mother, is one of hte MND-SMART co-investigators.
He said: “We’re very excited to be launching this trial.
“We are extremely grateful to the people with MND who have helped us design the trial and we believe their involvement will mean far more people will be able to take part.
“Listening to people with MND means we have developed MND-SMART to have very few exclusion criteria. We have also included the option of video calls to reduce the number of times people have to make the tiring journey to a clinic.”
Mr Weir, who won 61 caps for Scotland from 1990 and 2000 and toured with the Lions in 1997, was diagnosed as suffering from MND in December 2016, two years after he first spotted signs.
Video of Motor Neurone Disease research at the Euan MacDonald Centre
He founded the My Name’5 Doddie Foundation to raise funds for research into a cure, with support from other rugby legends such as Gary Armstrong and Finlay Calder.
He said: "The support we have received since we launched the Foundation has been incredible and has made it possible for us to invest in this exciting new trial.
"MND-SMART gives patients some hope, and that is what I have campaigned for since I received my diagnosis three years ago. We are committed to helping find a cure for MND and now patients can be directly involved in that endeavour," he said.
Lawrence Cowan, chairman of MND Scotland described it as a "historic" moment in the fight against MND.
“MND killed my best friend Gordon Aikman so suddenly, I never got a chance to say a proper goodbye. But I did make a promise to him that I would fight for everyone to have access to drug trials. I wish he was here to see this day," he said.
“This is one of the biggest MND trials the UK has ever seen - and it’s open to almost everyone with the disease.
“We will continue to fight to give people with MND access to effective treatments, and to beat MND once and for all. Together we can make it happen.”
Euan MacDonald, who is living with MND and is co-founder of the Euan MacDonald Centre for MND Research with his father Donald, added: “This is the result of 10 years of hard work and collaboration and we are thankful to those involved. Clinical trials like this provide hope that people around the world with MND will one day have access to safe and effective treatments.”
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