Doddie Weir, Rob Burrow and Len Johnrose joined forces to appeal for funding to find a cure for MND
The campaign calls for £50million from Whitehall coffers over five years for a “game changing” MND Research Institute. This would allow the promising work being done by separate groups of UK scientists to be coordinated at national level to accelerate finding effective treatments and a cure for the disease.
It affects the brain and spinal cord, stopping messages reaching the muscles. Symptoms include muscle weakness, twitches, slurred speech and difficulty swallowing.
Leading neurologists are confident a virtual research institute could achieve significant breakthroughs within five to 10 years.
This would make the UK a world leader in MND treatment, opening up pathways to help people with longer term neurodegenerative conditions such as Alzheimer’s and Parkinson’s.
This push for funding was started by a coalition of charities in the United To End MND campaign, including the MND Association, MND Scotland and My Name’5 Doddie.
With the help of the Sunday Express they are determined to stop families from having to go through the pain of seeing loved ones deteriorate and become locked in their failing bodies.
Rob Burrow was diagnosed with MND in December 2019
Rob Burrow, who played rugby league for Leeds Rhinos and Great Britain, was diagnosed with MND in December 2019.
The dad-of-three, 38, has become a prominent campaigner for public understanding of the condition and a fortnight ago published his inspirational memoir Too Many Reasons To Live, detailing his career and battle with the disease.
Rob is angry that research has been “neglected” and “under-funded” for so long and wants the Government to do more to help sufferers like him.
He said: “I am appalled to hear that in the past 30 years only one drug, Riluzole, has been approved and licensed for patients suffering with MND. This drug has minimal effect, increasing life expectancy by just three months.
“We live in a world with electric cars, robot hoovers, and where you can link up and play games with people halfway around the world. Yet there have been no advances in the treatment and management of MND patients.”
Rob, who won eight Grand Finals and was capped internationally 20 times, added: “I feel angry that this cruel, debilitating condition has been neglected, under-funded and under-researched for so long.
“That needs to change. With modern-day advances in science and medicine, the time for change and hope is now. MND does not just affect the sufferer, it affects the whole family.
“That is why we need the Government to fund vital research projects that could change the bleak outcome and reality of what sufferers and their loved ones face.”
Doddie Weir went public with his diagnosis in June 2017
Former Scotland and British Lions rugby union international Doddie Weir, who has become good friends with Rob since their shared diagnosis, backed his call.
He said: “MND is brutal and people like me desperately want treatment options and hope.
“Lack of research funding is holding this back, which is why this campaign is so important and why we’re grateful for all the support and publicity.”
Doddie, 51, who also has three children, went public with his diagnosis in June 2017, setting up the My Name’5 Doddie Foundation to raise funds for research.
He added: “Our UK and Ireland researchers are the best in the world and are making great progress but more money is needed to move from the labs to clinical trials.
“I’m told that treatments are on the horizon but we need an urgent focus on and commitment to MND research now to make this happen.
“I’m positive that, with the backing of the Government and our amazing supporters, this can be achieved and we can bring real hope to people living with MND.”
Former footballer Len Johnrose was diagnosed four years ago
Former Blackburn, Burnley, Bury and Hartlepool footballer Len Johnrose was diagnosed four years ago and has been raising awareness and funds ever since.
The 51-year-old said: “It’s so very difficult to talk about the need for greater investment in MND research without sounding somewhat biased but I’ve always maintained that it isn’t some sort of competition. I’m aware that there will be people asking, ‘Why MND? It isn’t even that common’.
“I’d counter that by saying that I don’t believe it’s that rare. I know of more people who have been diagnosed with MND than I know of people with cancer.
“But I’m in a minority? and that’s the problem! MND has been allowed to fade into the background. This campaign could change all that.”
He added: “We know that progress has been made over the past few years but to accelerate that progress, serious investment is required.
“For too long, there’s been an over-reliance on funding from charities. There’s been an overreliance on the very people whose lives have been devastated by this cruel disease to raise funds for future sufferers. But we need help. It’s time for the Government to play its part.”
Prof Chris McDermott
Prof Chris McDermott is a consultant neurologist leading groundbreaking research into MND at Sheffield University. His work is already having a positive impact in improving or stabilising the functions of sufferers and he is confident £50million would make a huge difference in finding effective treatments.
Prof McDermott said: “The United To End MND campaign has brought together people living with MND, the UK MND charities, scientists and clinicians in a way that has not been done before.
“Together we have produced a five-year plan which we believe has the potential to lead to the development of effective therapies.This plan builds on the recent breakthroughs in our understanding of the biology of MND and the strengths in the UK clinical research and care landscape.
“For the first time in my career, I see people with motor system disorders experiencing improvement or stabilisation in their function. This tells us these disorders can be treated.”
He added: “Currently the Government is funding MND research, however, to put our plan in action we need an opportunity to apply for additional funds.
“It has been amazing to see the sustained support of the Sunday Express in raising awareness of the terrible impact of MND and the subsequent offers of potential support from ministers.
“We now need to keep up the campaign so we can as soon as possible make a difference to those who develop this awful illness.”
Sally Light, chief executive of the MND Association
Sally Light, chief executive of the MND Association, said: “Few of us can imagine how it feels to be told you have a terminal illness for which there are no treatments and no cure. Yet, that’s the reality for the six people every day in this country who are diagnosed with this.
“As charities, we do everything we can. This year alone, thanks to the incredible efforts of our supporters, the MND Association has committed £5.7million to targeted research.
“But it’s not enough. What is needed is a real commitment from the Government, a pot of money to elevate MND research to the next level.”
She added: “We are closer than we’ve ever been to understanding why people develop the condition and to identifying treatments to stop it in its tracks. A funding boost to get us over the line is desperately needed, by those living with it, their loved ones and all of us who fight alongside them.”
David Setters is playing a pivotal role in the United To End MND campaign
David Setters is living with the condition and is playing a pivotal role in the United To End MND campaign.
He said: “At 64, with the wonderful support of my wife, family, friends and the NHS, I can just about cope with MND and the declining functions of my body.
“What I cannot accept is the devastation it brings to the lives of younger people and their families.
“A young guy I know came up to me in our village pub a couple of years ago and said, ‘Dave, I’ve got what you’ve got.’ This really brought it home to me.
“I subsequently found out he had a partner and a young daughter. He was born on the same day as our eldest son. I couldn’t bear to have one of my family diagnosed with this awful condition.”
David added: “We urgently need this cash injection for future generations. Without it, we won’t be able to help the over 200,000 people alive today who will get MND in their lifetimes.
“With it and the focus on MND that it will bring, I am convinced that the UK’s leading researchers will be able to get the first meaningful treatments into patients within the next few years.”
Dani Baird was diagnosed with MND in 2014
Dani Baird was diagnosed with MND in 2014 and is taking part in a gene trial at Sheffield University.
She said: “I got involved with the SOD-1 trial soon after I was diagnosed. It was really important for me to find, or do, something to help, for me as well as the cause.
“I’ve got children and it’s time something was done about this awful disease. It’s horrific. I’m the fifth one in my family to have it and we’ve lost four members, brothers and sisters, so there’s a big reason for me doing this which makes it all worthwhile.
“I’m doing everything I can by taking part in a trial while living with this horrible disease day in, day out, knowing it has already claimed my brothers and sisters.
“There is so much support in the community, and the charities and researchers are working so hard.
“But we need investment at a higher level ‑ we need the Government to commit to joining us in this fight.”
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