Dr Jean Waters is a former trustee of the MND Association who is living with MND, here she blogs about what it was like being a member on our Biomedical Research Advisory Panel (BRAP) and what it was like being a trustee.
A member of BRAP
Like most people living with MND I have a vested interest in MND research and am always interested in learning where it has got to and what is on the horizon. Having a medical background gave me a little more insight into the field than many and so when I first became a trustee I was delighted to represent the board on the BRAP.
The panel meet twice a year to consider research applications and allocate Association funds to support those that were successful. The panel is comprised of eminent MND researchers from the UK and Europe, with applications also being sent to external referees around the world, thus ensuring all grant applications get a thorough and fair hearing before deciding which projects should be funded.
Twice a year, a large pile of papers arrived on my doorstep and I knew I had many hours of reading ahead. Of course, trustees were not the people who could decide whether the science was good, the project deliverable or the researchers sound – that was the experts role, but we could ask pertinent questions to ensure the voice of those we represent was always in the room and assist in discussion when innovative and sometimes more risky ideas arose in applications, bringing the Association’s research mission, as guided by people with MND, into the decisions.
Six years of MND research
It was a steep learning curve getting to grips with the science, but a great opportunity to understand more, to see exciting ideas on paper being supported by the scientific research community and to see the wide variety of projects on the table.
Because I was a trustee for six years, I was able to see some projects through from beginning to end. When I first started in 2006, the only known gene causing MND was SOD1 (aptly named for what it causes, I thought!) but almost immediately came news of TDP43 and by the time I stood down at least another half dozen or so had been identified. I found it exciting that these discoveries opened up the research field in a way that had been unthinkable for many years and that some of the projects we had sanctioned for funding by the Association had delivered so convincingly.
Alongside the genetic work and increased understanding of motor neuron biology, stem cell research took off too, offering a chance to develop human cell models of MND alongside the mouse models that featured in so many applications. I found the idea of creating human motor neurons very relevant, but it took a bit of swallowing hard to accept that my kinship to a roundworm, fruitfly or zebrafish is closer than I care to recognise and that research on those models can offer a lot for the future for those of us with MND too!
The research jigsaw
With the successful campaigning of the government by the Association to increase MND research funding and the resultant research opportunities offered via the Medical Research Council, my time as a trustee coincided with unprecedented increases in research opportunities and results.
What it also taught me is that research, research and more research is needed to get the results we really want and bring about an effective treatment and one day, a cure. I was delighted to have the opportunity to get to know so many dedicated and committed MND researchers during my six years on the panel and to see their work exploding the knowledge of what happens in MND, but the experience taught me caution too.
Using the analogy of a complex jigsaw, I was lucky enough to see so many edge pieces fall into place, but research has still a way to go before enough pieces are in place to race to the middle, complete the puzzle and get the full picture. However, my time with the research advisory panel means I know full well that the MND research community is completely dedicated to doing just that and no matter how complex the jigsaw they will one day conquer it. It was a real privilege to help support them a little on their long journey to helping us with ours!
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