Day 2 began early!
By 8.15am our stand was on display in the ‘breakout’ room, where the tea and lunch breaks were held and also in the same room as the poster session. This meant that there was lots of potential for delegates to browse! I was keen to raise awareness of all aspects of the Association’s work, so information on fundraising, becoming an Association visitor, Patrick’s incurable optimism campaign and of course the research strategy was available.
The opening talk, given by Chris Ponting from Oxford University was excellent. Professor Ponting is not working in the field of MND, he was invited to give us an overview of where the fast moving and ever expanding field of genetics is currently at. I got most of what he was saying…
The next plenary talk was from Jan Veldink, from Utrecht. Jan is an MND researcher, so his overview was from a different perspective. I particularly liked his reference to John Ioannidis’ classification of researchers as ‘aggressive discoverers’ and ‘reflective replicators’ (the academic reference is JP Ioannidis, Epidemiology 2008, 19: 640-648 for anyone wishing to learn more.. ). He later put it into context by explaining that one of the genetic susceptibility factors linked to MND needed to be considered in more detail – saying that the ‘reflective replicator’ part had not been completed! As suggested by the title of his talk ‘The search for high hanging fruit’, there are many pitfalls to look out for in conducting genetic research and he had time to discuss a few of these in detail.
After listening to these and the excellent shorter presentations in this session, my brain was reaching it’s capacity to absorb new information! Following a re-charge with coffee, it was time to hear about the latest in pathology and some elegant talks on biomarkers. Martin Turner illustrated the potential of biomarkers for giving a prognosis of MND, monitoring in clinical studies and understanding the mechanisms that cause motor neurones to die. Vincent Meininger gave an exhaustive list of all of the markers that have been investigated in MND over the years – it was a salutary warning that finding effective biomarkers is not an easy task! Rigour and careful attention to detail is needed to ensure that any potential biomarkers are robust.
Day3: Suddenly the conference was drawing to close!
Before the talks began on the last morning there was a lot of discussion around the debate on riluzole the night before. The scientific evidence is that riluzole is effective for MND. However, there are side effects and neither a doctor (nor the patient) are able to tell whether the drug is working for a person with MND – it is not like taking a pill for a headache! This makes it a difficult dilemma for doctors and patients alike when discussing this medication. The discussion ranged from the undisputable statistical facts to how a person with MND might feel taking, or not taking riluzole. These were summed up by MND Association grantee Professor Lizzy Fisher chairing the first session of the day. “As a non-clinician I felt privileged to listen to the expose of what clinicians face on a day to day level”.
From one difficult topic to another – how we use animal models to understand more about MND was the area discussed in this session. I took away two main points from this session. Firstly, that we can obtain important information on many aspects of why motor neurones degenerate and the best way to treat them by careful attention to detail; and secondly, how important is the SOD1 model of MND when it is likely that TDP43 has a far greater importance for cracking what causes MND and how to stop it – shouldn’t we concentrate our efforts on a TDP43 model instead?
For me the most challenging session to understand was the very last one of the conference – that on ‘RNA biology and neurobiology’. Two new MND-linked mutations over the last couple of years – TDP43 and FUS – are known to play a role in how RNA processing works (see our website under ‘Editors on strike’ to read more about this). This is an area that has gone wrong in a range of other diseases. Dr Jean Marc Gallo based at King’s College London described a number of strategies and techniques he has used for other disease which we can now adopt for understanding this important new area of MND research.
Reflecting on the train on the way home
This conference was about young researchers, keen to share their data and begin to get to know people across the European MND community. The more established researchers presenting in the plenary slots gave either an overview of what is already known, or some guidance on what pitfalls to look out for and new things to try in the future. I feel that European MND research is in rude health to continue moving us towards a world free of MND.