Sunday Express MND campaign: Give us the funds so we CAN cure Motor Neurone Disease
Motor Neurone Disease: Expert on early signs and symptoms
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Our Fund The Fight To Cure MND crusade is backing a group of causes that are already battling for the cash ahead of Chancellor Rishi Sunak’s next spending review. We are adding our voice to the push for the money already started by a coalition of charities in the United To End MND campaign, being run by the Motor Neurone Disease Association, MND Scotland and My Name’5 Doddie.
There are currently no effective treatments or cures for this devastating terminal disease. The campaign aims to make it “treatable”.
The Government claims it has spent £54million on MND in the past five years, but campaigners suggest most of the funding has gone towards general neurological research, rather than targeted studies.
They argue a more accurate estimate of targeted Government funding to be under £5million per year, less than the charities themselves contribute.
Motor Neurone Disease describes a group of diseases that attack nerves that control movement, so muscles no longer work.
If successful, funds raised by the campaign would fund a virtual institute for MND Research, providing the infrastructure needed for accelerating treatments and bringing together advances in both clinical and core science research.
It will focus on world-leading drug discovery and development, building a sustainable MND trials platform and implementing a rigorous clinical research programme.
MND Association director of external affairs Chris James said: “Research into the causes and potential treatments for MND has a real momentum right now and, if we can work together, real change will happen.
“With the added backing of the Sunday Express, the United To End MND coalition hopes to persuade the Government to
make a five-year investment in targeted MND research.
“This financial boost will enable a virtual MND research institute to be established, bringing together government, science, patients and industry with one aim – to accelerate the search for effective treatments and, ultimately, a cure for this devastating disease, which kills six people in the UK every day.”
In 2014, the Ice Bucket Challenge raised £7million in the UK alone, kickstarting multiple advances in potentially life-changing new treatments.
Mr James described this as a critical moment for MND research. He added that with resources to run trials there could be a treatment for the disease in the next five to 10 years. “We are talking about making MND a treatable disease,” he said. “This would be a world-leading drug and discovery development and trials platform.
“We are at this important moment for MND because there’s been a lot of progress in recent years in research. We think we can really develop strong therapies for particular types of MND.
“With extra investment from the Government we will begin to see trials for treatments and therapies in the next few years and certainly some very exciting developments for particular types of the disease, which could see real treatments in the next five to 10 years.
“As a charity we can only do so much, so what we need is government and industry to come on board. We have felt MND is something of a forgotten disease when it comes to funding and research. We can only make progress with increased support.
“The Government looks at MND as a rare disease, which we don’t believe it is. There is a lifetime risk of one in 300 but because the prognosis can be very short, and many die within a year, you don’t get a growing number of people. This is game-changing for MND research. The institute will make all the difference.”
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Nicola Waters, 47, was diagnosed with MND two years ago and is part of the United to End MND campaign.
She describes the moment she was told she had the disease as “devastating”, and hopes trials in the next few years could change her life.
The mum-of-two said: “I’d had symptoms for about two years, but it didn’t cross my mind that I had MND. It was quite a shock.
“Coming to terms with it was very difficult, especially with the impact on my children. When I think about that I find it very upsetting. But I have hope because I know the science is there, and that’s why I’m part of a wider group of patients fighting to give scientists a chance to cure us.
“There have been so many developments in terms of understanding what the disease is in terms of how it operates. What I don’t see is discoveries turning into treatments.
“We have the most amazing scientists in the world, but they’re not able to bring those lab discoveries into the clinic.
“At the moment all we get is palliative care. All the doctors can do for me is
give me sympathy and help me cope with symptoms. But with this investment it might put us in a position of a clinical trial.
“In two or three years I could be on a trial that is keeping me alive. The Government is not putting money into this disease. Most of it comes from charities. They’ve done an amazing job – we are on the brink of a cure – but really it is time for the Government to step in.
“MND is a horrific disease, it is the most common reason people seek assisted suicide. We see people with cancer or other illnesses go on trials and it is incredibly frustrating that there isn’t anything there for us. Just being given the opportunity to try would mean everything to us.”
Parliament debated MND funding last week after a petition reached 100,000 signatures, while the official bid was given to the Government on Monday.
This proposal has been developed with the backing of global pharmaceutical companies, with letters of support from Biogen, GlaxoSmithKline, Novartis, Eli Lilly and PrecisionLife.
It is hoped that increased investment from the Government and the resources this could bring, will spark even more interest from the pharmaceutical industry and establish the UK as the leading player in the extremely valuable global field of neurological disease research. Andrew Lewer, chair of the All-Party Parliamentary Group on Motor Neurone Disease, said: “I think there is the appetite in Parliament for this. There have been some major breakthroughs recently and now is the time to capitalise on that.
“There has been a change of tone, and scientists are saying they have found the key – they just need funding to bring it out.
“I don’t need to spell out why this is important. It is a ruthless disease. This is something that can make a massive difference and we could look back in a few decades saying ‘look, we ended up with a cure’.
“Britain is a leading country in this sector, this is a huge opportunity. We have done it with Covid, we played a huge role in HIV/Aids, and this could be the next massive British breakthrough.”
Prof Ammar Al-Chalabi, Neurologist and MND researcher, King’s College London
Motor Neurone Disease research is at a tipping point. When I started working on it, nearly 28 years ago, it was seen as a rare, hopeless disease that could never be cured. Now we know it is not really rare – it’s just that it usually kills people within a couple of years so there are never many around with it. More importantly, we now know it is possible to cure MND with the right tools.
For example, gene therapy, a type of treatment that edits someone’s DNA, works in a childhood condition similar to MND. Gene therapy trials for MND are happening now. But even if that treatment works, it will only cure about 10 per cent of people with the condition – those who have a genetic predisposition. The other 90 per cent still need an effective medicine.
Thankfully, we are making huge strides and we know more than ever before about what causes the disease, why the nerve cells die off, and how we might keep them healthy.
But we need proper investment. Diseases such as MND, dementia and Parkinson’s will become more common in the future because of the way the population is changing. MND often strikes people in the prime of life, just when they have families, when they are at their career best.
Around a third of sufferers die within a year of diagnosis and half within two years. This dreadful outlook is a tragedy for those living with it, but this rapid disease progression also means we can learn about what might treat it quickly. And what we learn can be applied to dementia and Parkinson’s because they are caused by similar problems in the nervous system.
Every clinic day, I have to give people the devastating news that they have MND. I have to tell them it is a terminal illness and there is no effective treatment.
I find those conversations emotional and very difficult.
But it is absolutely nothing compared to what receiving that news is like, to what those individuals are going through and will go through.
The only way to really help is to find a cure, and that takes more and better research.
This is what motivates me and the thousands of other health professionals and scientists researching MND across the world.
Charities do what they can. Their investment in targeted MND research in the UK outstrips that of the Government. But it is not enough. We need the Government and the life sciences industry to step up. That is why we started the United To End MND campaign. We know what even a little extra can do.
In 2014, the Ice Bucket Challenge brought an additional £7million to MND research in the UK. About £5million of that was used to accelerate research programmes, bringing them forward by about five years.
As a direct result, we have discovered new genes linked to the condition and new ways to measure its progression using blood tests – both vital steps towards a cure.
MND scientists are fantastic at working together. Now we need the Government to work with us. Our vision is a virtual MND Research Institute, bringing together centres of excellence across the country to work together to find a cure.
This institute will be a partnership between patients, charities, scientists, health professionals and industry. With government on board, we could dramatically accelerate the search for a cure. We can see that targeted state funding like this helps. The Government already has similar schemes for dementia and cancer. Let’s do it for MND.
By creating a platform like this, we can make real progress. We can develop a research pipeline starting with understanding what happens in the patient, through to finding possible treatments for testing.
We can put those treatments into better clinical trials more quickly with a national, co-ordinated effort.
But that takes considerable investment up front. At the moment, only about one in 12 people with MND takes part in a clinical trial. We want to be able to offer that opportunity to everyone with the disease, giving them hope and scientists like me more of the information we urgently need. Conducting trials in this way is fast – that’s what worked in finding a vaccine for Covid.
Our ask, as a coalition – patients, neurologists, the Motor Neurone Disease Association, MND Scotland and My Name’5 Doddie Foundation – is simple.
We want the Government to pledge £50million over five years to fund a national co-ordinated research effort in MND.
That will be matched by funding from charities and industry. £50million will be like a rocket booster for MND research.
The UK already has many of the world’s top MND researchers, best universities and top MND specialists. Let’s give them the lift they need to crack this scourge and accelerate the search for a cure.
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