A time to celebrate

Last night I attended Professor Linda Greensmith’s inaugural lecture. When a researcher is awarded a ‘personal chair’ (in other words becomes a professor) they are requested to give a non-technical ‘inaugural’ lecture to an invited audience. It is an opportunity to celebrate their achievements amongst family, friends, colleagues and supporters.

The title of Professor Greensmith’s presentation was ‘MND: from muscle to nerve and back again’. She described her achievements in understanding more about MND since she was awarded the Graham Watts Senior Fellowship at the Institute of Neurology, UCL in 1999.

It was a brilliant overview of some of the key advances that have been made in the last ten years or so. Some of these include the importance of the support cells and muscles in determining how motor neurones die, and the discovery that a protein called ‘TDP43’ accumulates in the motor neurones of the majority of people affected by MND. Linda talked about her work on developing robust methods for studying MND using mouse models; some cutting edge research on learning how the motor neurone transport system is affected in MND and the ‘back story’ behind the arimoclomol clinical trials currently underway in the USA. She also paid generous tribute to the way that the MND Association has supported her work during this time.

As well as understanding more about MND, some of the aims of the Graham Watts Senior Fellowship were to promote MND research within the Institute and encourage collaborative research. A clear measure of the success of both of these was the roar of conversation at the reception afterwards. It was difficult to make yourself heard amongst her colleagues and collaborators! For me it was a great opportunity to catch up with past and present researchers from Professor Greensmith’s laboratory. Many of these are current grantees, members of our advisory panels or care centre directors – or in some cases, all three! I was very proud to be there.

Summaries: dawning of a new round

It’s that time of year again where as one research grant application round is drawing to a close another one is just starting. 

Just one week after the Biomedical Research Advisory Panel (BRAP) meet to discuss the outcome of the previous grants round, we expect to receive a number of new applications for our next round. This time last year, we received a whopping 25 applications which is over half the number of projects that we currently fund! So, we are waiting in eager anticipation to see if we break a new record for the number of applications submitted to us, or whether the number will fall back to our ‘normal’ estimates by the deadline of Friday 22 October.

The way that we fund research starts with a summary application stage. A summary is a two-three page outline of the proposed project. After the deadline, a decision is made by our research grants manager as to whether the summary is relevant to ‘classical’ MND and the project aims fit with the Research Strategy:  http://www.mndassociation.org/document.rm?id=751,   if the summary does not fit in with these then it is rejected.  If the criteria are met, then the summary is sent to three members of our BRAP to be reviewed. 

When assessing the reviewers’ comments and scores we use a two thirds majority rule. Each reviewer scores the application, if it scores under 50 it is classed as unsuitable for funding, over 50 and we invite the applicant to submit a full application.

This process allows us to ensure we only fund research of the highest quality and of direct relevance to MND.

We’ll keep our fingers crossed for another bumper round and we’ll let you know of the outcome soon of how many applications we’ve received, and how many are invited for full application!

Campaigning for science funding

This week has been quite exciting in the research development team. The symposium abstract book has been printed, the biomedical research advisory panel are meeting today to discuss the applications submitted to us for research funding in May and the campaign to save government spending on science that we are supporting has been stimulating a lot of discussion and debate…

On Saturday 9 October, our very own Dr Belinda Cupid, head of research spoke to BBC Radio Kent about the proposed plans to cut the science budget and what this would mean to us. You can listen to the interview via the BBC iPlayer for Pat Marsh’s show on 9 October 2010 (it starts at 2 hours six mins 46 seconds and finishes at 2 hours ten mins).

Later that day, our president, Prof Colin Blakemore spoke at the Science is Vital rally held in London. Colin has been heavily involved with the campaign and was interviewed by the BBC alongside a Science is Vital representative. You can see the BBC coverage here: http://www.bbc.co.uk/news/uk-11508105

Cuts to medical and health research may further marginalise ‘orphan’ diseases like MND which traditionally receive less government funding.

So far, at least 16 people living with MND have signed the petition – which has been mentioned in a New Scientist blog article. So, thank you so much to all those who have already signed as your voices really are being heard!

If you haven’t, and are interested in getting involved then please visit http://scienceisvital.org.uk for more information.

Today, the MND Association was given a high profile in two articles in The Times, warning the government against cuts to the science budget.

The first is a letter written by the Association of Medical Research Charities (AMRC), warning the government of the effects that potential funding cuts could have. As the Association is a member of the AMRC, our chief executive Kirstine Knox was a signatory on this letter. We have received permission to share it with you:

Sir,

Our work benefits millions of patients across the UK. Last year alone the 124 members of the Association of Medical Research Charities funded more than £1 billion of medical and health research. As a proportion of public expenditure that is more than any other country. This contribution is driven by the combined efforts of volunteers, supporters, donors, clinicians, scientists and patients themselves. If ever there was an example of the “Big Society” in action this is it.

Ahead of the Comprehensive Spending Review (CSR) we have asked the coalition Government to sustain science funding and ensure an environment that allows charities to fund research on behalf of patients. Failure to do so will lead to the UK losing its position as an international leader in science. Additional unacceptable strictures on research, such as the proposed cap on non-EU migrants, can only fuel concerns that our future scientists will be expected to work with one hand tied behind their backs.

Ministers are mistaken if they believe that charities are a substitute for Government expenditure. One of the great strengths of UK science is the synergy that exists between public, charitable and industry sources of funding. Only last week we saw evidence of what this collaboration can mean with the bowel-screening announcement heralded at the Conservative Party conference. It is such progress and the opportunity to improve health and wellbeing that has enabled us to build public support for research, support that leverages funding from other sources for the common good.

We recognise the very difficult decisions facing George Osborne. But in these final days before the CSR announcement he may wish to reflect on the comment by the American health activist Mary Lasker: “If you think research is expensive, try disease.

Yours faithfully,

AMRC member charities

The second Times article is an overview written by Mark Henderson which refers to the letter and specifically mentions the MND Association alongside such funding bodies as The Welcome Trust. Having our name printed alongside major funding bodies is brilliant coverage for both motor neurone disease and the Association!

We’ll keep you posted on the progress of the campaign via our blog and our twitter account at www.twitter.com/mndresearch.

Workshop on closer European working

Last weekend 19 neurologists and researchers gathered in a hotel seminar room in The Netherlands to talk about building closer links across Europe.

Prof Leonard van den Berg, the current chair of the European ALS Consortium organised the workshop to work out how we can collaborate more effectively across Europe. Prof van den Berg is a neurologist specialising in MND with a busy and active research group, based in Utrecht in The Netherlands.

Ultimately we would like to have the infrastructure in place so that European researchers can react quickly to new opportunities in MND. For example, what would we want to do if another drug like lithium came along?

 In 2009 a number of clinical trials to investigate whether lithium carbonate may be effective in people with MND were organised and funded on a national basis across Europe. (The UK clinical trial is still ongoing, although closed to recruitment). These trials represented a milestone in MND clinical research. Why? Because they were the first MND trials for many years that did not involve pharmaceutical companies. Crucially as well as providing the drug that may be beneficial, pharmaceutical companies also provide the infrastructure and funding to conduct the studies.

As we know from the example of the UK Department of Health’s Dementias and Neurodegenerative Disease Research Network (DeNDRoN) having an infrastructure already in place greatly enhances our ability to conduct non-pharmaceutical led trials. The support from DeNDRoN includes ways of monitoring the trial while it is in progress and analysing the results when it has finished. The lithium study proved it is possible for neurologists and researchers to co-ordinate their own national clinical trials, the next step will be to work together to co-ordinate European clinical trials.

It was agreed that the first step to develop this infrastructure was ensure that we have more ways of sharing information on current research activities and a greater ability to react quickly to new opportunities. Linked to improved clinical trials is the availability of biomarkers that can be used and measured in a consistent way. Such biomarkers may improve the diagnostic process and therapeutic monitoring in MND. During the workshop a way of sharing the protocols for measuring biomarkers across Europe was agreed.

Delegates attended from the UK, Ireland, France, Germany, The Netherlands, Belgium, Italy, USA, Switzerland and Portugal representing a wealth of expertise: from running clinical trials; designing databases and registries; and developing a range of biomarkers from brain imaging to electrophysiology. As well as talking about improved collaboration, it was a great opportunity to hear about other research activities underway. It was also striking to note how well the proposed activities fit with the Association’s research strategy.

The workshop was organised by the European Neuro Muscular Centre (ENMC), who looked after us very well.