The MRC has been working in partnership with the Motor Neuron Disease (MND) Association to raise the profile of research on motor neurone disease, with the aim of translating basic science research into clinical treatment of MND.
In December 2007, lay experts from the MRC Public Panel contributed to discussions on fundamental issues for research in MND – a condition which attacks the nerve cells in the brain that control movement leading to weakness and wasting of muscles.
Panel members, who joined experts from a number of scientific areas; policy makers and representatives from other relevant organisations, identified how the field can be advanced.
Jean Waters, a patient and trustee for the MND Association, attended and spoke at the workshop. Jean’s talk helped personalise for the delegates what research means to people with MND. She said: “being productive in translational research is the only way patients feel they can be of use - if more research can be funded we can begin to see light at the end of the tunnel.” Other lay experts present were Dr Colin Sanders, who has retired from dentistry and has experience of another degenerative condition; Parkinson’s disease, and Marilyn Weerasingh, a specialist teacher for children with learning difficulties and an interest in research aimed at improving health.
The workshop was the beginning of a new initiative aimed at accelerating the pace at which research findings are turned into prevention and therapies for MND. The MND Association and the MRC have pledged an additional £15 million for high-quality research aimed at finding new treatments and cures for this debilitating neurodegenerative condition,
Currently, the MRC invests around £3.7 million a year on research related to motor neurone disease. It’s looking to fund at least £7.5 million of new research over the next five years. At least the same amount will be spent on research by the MND Association’s private donors.
In November 2007, Ian Pearson, the Science and Innovation Minister, announced the new initiative. He said:
“Motor neurone disease is a rapidly progressive and fatal disease that affects around 5,000 people in the UK. At present there is no cure. However, the Government is committed to supporting the MND Association to advance our knowledge and treatment of the disease. Medical research in the UK benefits tremendously from the support of charities such as the MND Association. Working together, Government, research councils and charities can maximise the impact of money spent on research for the benefit of all of us.”
At the workshop, delegates agreed that the research focus should be on three areas: hunting for MND genes: investigating biomarkers that can indicate at what stage the disease is at: and developing better animal models of the condition.
To further these goals, collections of well-characterised samples and large-scale genetic studies are needed, the delegates recommended. The emphasis should be on biomarkers for the early stages of disease so as to improve chances of treatment before it is too late. Developing a range of models will be more beneficial than focusing on a single experimental model.
The outcomes from the workshop will feed into the MRC’s long term strategy for investment and partnership in neurodegeneration.
The MRC and the MND Association have also recently set up the jointly-funded Lady Edith Wolfson Fellowship scheme. The fellowships will support clinicians who pursue research into the disease process and treatments for MND.
Find out more
If you are interested in finding out more about the ways in which the MRC involves patients and the wider public in its work, please contact:
Contact: Hala Patel
Telephone: +44 (0) 20 7670 5344
Email: hala.patel@headoffice.mrc.ac.uk