Three organisations have said the money could allow major steps to be taken against the condition
A trio of charities have called for significant funding to allow them to carry out groundbreaking research.
United to End MND – a campaign led by charities MND Scotland, the My Name’5 Doddie Foundation and MND Association, as well neurologists and people living with MND – calls for £50 million of UK Government funding over five years to target MND research.
To catapult the campaign, patients throughout the UK have now written and signed a personal letter to the Prime Minister Boris Johnson, which will be presented at 10 Downing Street on Tuesday 21 September, by rugby legends Doddie Weir and Rob Burrow.
Speaking to BBC Breakfast to launch activities, Doddie said: “We are continuing to fight to try and make a difference, and to try and find a cure for this horrific issue of MND. The UK has the best researchers in the world and at the moment we’re nearly there to find a stoppage or a cure. So this letter, and the money from the government, will make a massive difference. This will give a lot of hope to people with MND. We need to take it to the next level and with that we need the government’s help.”
Before his departure to London, Doddie is leading the charge by sending the patient letter on a relay across the nation, to encourage more people living with MND to sign it, starting with fellow MND campaigner, Euan MacDonald in Edinburgh.
Euan, who has MND, is the co-founder of the Euan MacDonald Centre for MND Research. He was joined there by Dr Suvankar Pal, consultant neurologist from the University of Edinburgh and Rachel Maitland, MND Scotland’s chief executive, who are showing their support for the letter.
The letter states ‘MND is a death sentence’ but that ‘research has now reached a point where a cure or life-saving treatments can be found’. It continues “The current piecemeal and protracted approach of funding individual projects will not deliver the life-saving treatments we need…we urgently appeal for action and investment now.”
Euan said: "I very much believe the goal of finding treatments for MND is achievable. The letter and supporting statements highlight the personal impact this disease has had on families like mine and others up and down the country. We are trying to ensure other people's children, spouses, parents and siblings don't have to go through what ours have. I'd like to appeal to the Prime Minister to back MND patients and have confidence in UK Science achieving what may have previously seemed impossible - a cure for MND."
Currently the UK Government's funding for targeted MND research stands at less than £5 million a year, which the campaign coalition says is not enough. £50 million from the UK Government over five years would fund a virtual institute for MND Research, providing the infrastructure needed for accelerating treatments for MND.
The funding bid has already been debated in the UK Parliament after a petition to garner public support gathered more than 100,000 signatures in just three weeks. Members of the campaign coalition have met with key politicians to explain the desperate need for the cash, to shore up the investment made by charities and industry.
With the support of MND charities and neurologists, campaigners are now taking the call directly to Downing Street and people living with MND still have the opportunity to add their signature here.
Dr Suvankar Pal, the co-lead investigator of MND-SMART, the UK's biggest drug trial for MND, said: "This is an exciting time for MND research with many centres across the UK working on important areas ranging from drug discovery to delivery of treatment trials. We fully support this initiative which promotes collaborative working and much needed investment in research with the aim of delivering new treatments for MND in a timely way."
Rachel Maitland, MND Scotland’s chief executive, said: “We are united here today to ensure the voices of those living with MND are heard by the UK Government. The average life expectancy for someone with MND is just 18 months from diagnosis. People like Doddie and Euan do not have time to wait, and neither does our search for a cure.
“MND Scotland’s vision is a world without MND. But we are only able to fund the pioneering research taking place at the Euan MacDonald Centre, and other institutes across the UK, because of the generosity of our supporters. MND isn’t incurable, it’s just under-funded. Together, we will beat MND, but we cannot do it without the UK Government’s support.”