Happy New Year – Quiz answers and round up of 2011!

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And the answers to our Christmas Quiz are:

  1. How many neurones does a human have? Billions
  2. Which animal has the largest brain? Bottlenose dolphin
  3. How much does a human brain weigh in comparison with our total average body weight (in percent)? 2
  4. How many DNA samples does the MND Association’s DNA bank hold? 3,400
  5. How many research projects do we currently fund? 44
  6. How much does our research project portfolio currently come to? £7.6m
  7. How many PhD studentships do we currently fund? 12
  8. How many times a year do we have research grant funding rounds? 2
  9. How many unproven MND treatments have ALSUntangled investigated so far? 13
  10. How many stem cell research projects do we fund? 2

At the beginning of a new year, it’s always encouraging to look back on how far we’ve come. The list of MND research achievements continues to grow exponentially every year, and I’m pleased to say that last year was no exception, demonstrating that we really are living in exciting times.

2011 had some important discoveries in the world of MND research to find the answers to what causes MND. A number of MND causing gene mistakes were discovered including C9ORF72, Ubiquilin2 and SQSTM1. With these findings, we now know the cause of approximately 70% of cases of inherited MND – a massive leap from approximately 25-30% of known genetic mistakes the previous year.

Within the team, we’ve also made some promising headway toward our aims set out in our research strategy, by funding and promoting cutting edge research both within the UK and around the world. For example, our groundbreaking biomarker project led by Dr Martin Turner at Oxford yielded its second set of promising results, just three years into the five-year project. Dr Martin Turner also gave an enthralling talk at last year’s International Symposium on ALS/MND on neuroimaging (brain scanning) and he’s regarded as ‘the man’ to speak to in terms of MND neuroimaging on an international level.

As well as the research projects that we fund yielding positive results, and following progress on an international level, we’re also a major player in promoting research. The key to defeating MND lies in fostering strong collaboration between leading researchers around the world  and sharing new understanding of the disease as rapidly as possible. In 2011, we made two huge steps in this:

In January 2011, in conjunction with two leading members of the International Consortium of Stem Cell Networks (the Canadian Stem Cell Network and the UK Stem Cell Network), The New York Stem Cell Foundation and the ALS Association of the USA, we organised an MND stem cell conference. Our workshop brought together 60 of the world’s leading stem cell research experts to shape the development of future international MND stem cell research and to form new research collaborations. We were privileged to organise this event and the research community now have a solid foundation of understanding of where we are in terms of MND stem cell research. Dr Brian Dickie, our Director of Research now also has the honour of being a co-author on the scientific paper from the conference – published in the journal ALS.

In July 2011, we made a further step forward in sharing new understanding rapidly by joining a group of research-funding organisations to fund UK PubMed Central, an online research database containing over two million research articles. This is the first step in the Association’s aim to establish a comprehensive resource for the global MND research community.

We also had a fantastic year for improving the way we fund research and maintaining our high standards.

For our first grants round of the year, a record-breaking 19 full applications were considered for funding by our Biomedical Research Advisory Panel. Only one in five research applications is considered of a high enough standard for funding, but through our rigorous process we can provide our donors with the assurance that they are supporting the ‘very best of the best’ MND research.

Before our second grants round, we announced the successful launch of our online summary application form for researchers applying for grants and PhD studentships. By evolving our summary application process to use an online system, we are able to ensure that our high standards are maintained and that we are using our time efficiently and effectively to fund high-quality research.

We also proudly received our certificate for best practice for our rigorous procedures for funding research from the Association of Medical Research Charities (AMRC) in the UK with a comment saying that we are “considered as setting the standard within the audit”.

You can find out more information on the research projects we currently fund on our research we fund information sheet.

One of our highlights from last year, and the result of over a year’s work in preparation from the research team and our conference team, was the International Symposium on ALS/MND held in Sydney, Australia. We are proud to organise this vital worldwide event every year, and are pleased that last year was successful. Holding the event in different countries around the world enables us to draw new people into the international research community, bringing new ideas and expertise to the field and creating new alliances in the fight against MND.

We took you behind the scenes of last year’s symposium by writing daily blog articles on a multitude of topics. If you’ve not already read these, you can find an introduction to these with links on our blog. Please remember to complete our survey on what you thought of our reporting, as it really helps us to determine whether we should continue to report from the symposium, and whether we should change anything.

We’ve definitely set the bar in 2011 and have a lot to live up to in 2012. We’re really looking forward to see what 2012 holds for MND research, and we hope that you’ll continue to follow our progress on our blog throughout the year.

We wish you a very Happy New Year from all of us in the Research Development Team at the MND Association.

The MND Association’s vision is a world free from MND. Realising this vision means investing more in research, further developing partnerships with the research community, funding bodies and industry, while ensuring that advances in understanding and treating MND are communicated as quickly and effectively as possible. Our Research Development team, composed of 11 members, work hard to achieve this. Principally, the Research Information team within this are involved in communication activities including this MND Research blog.

3 thoughts on “Happy New Year – Quiz answers and round up of 2011!

  1. Happy new year team!

    2011 saw a number of great things for patients in the research world, such as the increasing prominence of ALSUnlocked. We have been working behind the scenes to ensure that (like ALSUnlocked) research from PatientsLikeMe is open access so that patients can read the findings without having to pay fees of $40 per article to read a PDF (particularly when it may have been funded by their donations and relied on their participation!).

    Do you think it would be possible for the MNDA to take the approach of the Wellcome Trust and others in insisting that all research it funds is author-archived or open access? Author-pays open access would be the most accessible route for patients and researchers but means adding about $3k per publication to grants. Author archiving such as through Research Gate might be viable too.

    Best wishes for 2012,

    Paul Wicks

    1. Hi Paul,

      Thanks for your comment, we hope that you, and all those at PatientsLikeMe have a great 2012 too.

      By joining UK PubMed Central in 2011, we have ensured that all findings from future funded projects will be open access. Here’s our press release on this.

      Our grant terms and conditions explains this in more detail from point 17 but basically, all future projects from 2011 onwards will be open access and will also have to be uploaded onto UK PubMed Central. Most of our current grants (including pre-2011 which may not be open access) have already been uploaded onto the system, so it’s possible to see the grants that we fund on this resource – it also allows people to jump directly to either previous publications by the grantee and any publications linked to the project. All in all, it’s an incredibly useful resource that we hope can help us to share information and knowledge about the outcomes of our research projects in a new and exciting way.

      We hope you think so too!

      Best wishes,


  2. Hi Kelly,

    Wow that’s great news, thanks for letting me know and congrats on making such a great stride for open access for all!

    Maybe use your Twitter for some “best of” research tweets from these archives? =)

    Best wishes


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