Our Research Strategy has recently been revised and can be downloaded from our website: http://www.mndassociation.org/document.rm?id=751.
Although it can seem that MND research moves at ‘glacial’ speed, the fact that we have had to update the strategy to take into account new gene discoveries, new laboratory models of MND, advances in stem cell technology and the upsurge in research activity around the world, all serve as reminders that scientists and clinicians are continuously chipping away at the disease and probing for a weakness that can be turned into a potential treatment.
There is no getting away from the fact that MND is a complex disease: the causes are complex, the biochemical pathways underpinning motor neuron degeneration are complex and the treatment approaches are likely to be complex. But if we can continue to put the right building blocks in place – to understand the causes; develop laboratory models that truly represent the human disease; improve diagnosis and measuring disease progression; ensure consistent high quality care; attract the best researchers to work on MND and encourage greater international collaboration – the challenge will be that much easier.
At the Association’s International Symposium, a few years ago, Prof Bob Brown (a senior ALS neurologist from the USA) commented: “There’s a ‘sea change’ coming in MND research.” We still have a voyage to make, but perhaps we are just beginning to feel the breeze in the sails…?
When the alarm went off at 6.25am on Saturday morning my body shrieked at me to stay in bed! However, as I had accepted an invitation to give a presentation on research to the Association visitor (AV) workshop that was taking place in Harrogate later that morning, it was a case of mind over matter! I was on the road by 7.15am.
Association visitors are volunteers that stay in contact with people with MND offering them a friendly, listening ear and ensure they receive the support and services they require. I usually meet one or two AVs when I attend branch meetings, so the workshop was a great opportunity to spend time with them exclusively.
The talk I gave was broadly based on the recently approved research strategy for 2010 – 2015. The strategy covers seven strategic themes: finding the causes of MND, creating better laboratory models, identifying disease markers, developing the research workforce, improving the clinical /care research base, facilitating information exchange and strengthening partnerships and influencing. For each of these I explained why they are important to move us towards a world free of MND and giving some examples of current activities and future plans. The strategy isn’t on our website yet, but will be soon!
I talked for about an hour and took some questions afterwards. Some of the questions were about the talk and some were on more general things, for example, there was a question about the lithium clinical trial . There was also a question about raising awareness of MND research amongst neurologists and GPs.
Making MND research simple and easy to understand is one of my passions, so I was pleased to get some good feedback from the talk. I caught up with more general news and answered a few more questions over lunch. By 1.30pm I was off across the beautiful Yorkshire countryside to visit friends nearby.