A petition urging the Government to invest £50million into targeted motor neurone disease (MND) research has attracted 110,000 signatures leading to a debate in Parliament.
On the same day, Martyn Day MP will lead the debate, the coalition behind the United To End MND campaign has submitted a spending review bid to the new Secretary of State for Health and Social Care Sajid Javid.
The bid urges the Government to plough £50million over five years into the search for new treatments for the terminal illness. The funding, augmented with further investment from MND charities and industry, would allow for creating a virtual MND Translational Research Institute.
The coalition, led by people with MND, leading neuroscientists, the Motor Neurone Disease Association, MND Scotland and the My Name’5 Doddie Foundation submitted the bid following a Round Table on MND Research led by Helen Whately, Minister of State for Care in April, and a meeting with the Department of Health and Social Care.
Professor Ammar Al Chalabi, neurologist and leading MND researcher, is involved in the United To End MND coalition. He said:
“The current funding models don’t work. Our calculations show that MND research receives less than £5 million of targeted funding from the Government each year. The charity sector outstrips that figure. That isn’t right. The six people every day who are diagnosed with MND deserve better, and this submission is the chance for this Government to deliver that.
“We believe that a significant investment by Government will attract future investment from industry – and that’s when research will really be accelerated and start to make a tangible difference to the 200,000 people alive today who will develop MND.”
Scottish rugby legend Doddie Weir has been at the forefront of the campaign and authored the petition. As part of the coalition, he has discussed the funding call with politicians and received considerable cross-party support for the United To End MND campaign.
“MND is a cruel disease with no effective treatments and no cure. However, I’m delighted it will be discussed in Parliament thanks to the huge support we’ve received for our petition and campaign. I’m hopeful that our submission will increase the targeted MND funding we so urgently need.
“Today, I feel we are taking a step closer to realising our vision of a world free of MND.”
The coalition is asking for £50million additional investment to be ring-fenced in the spending review, expected towards the end of the year from Chancellor Rishi Sunak, which sets out future spending on public services.
For more information about the campaign, visit www.mndassociation.org/unitedtoendMND