International Symposium on ALS/MND: Destination Orlando

The August Bank holiday weekend is always greeted with a sigh of relief from the Research Development Team as it signals the sending off of the International Symposium on ALS/MND abstract book to the publishers.

The book includes teasers/previews – called abstracts – of all the talks and posters that will be presented at this year’s symposium. It is the result of many months of hard work by the team, hours of editing and proof reading, and the sending and receiving of hundreds of emails.orlando 2015 logo

But why is the symposium such a big deal and why are the MND Association involved in organising it?

The birth of the International Symposium on ALS/MND

It all started in Birmingham…

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. This was the MND Association’s reasoning behind the creation of the International Symposium on ALS/MND.

The first was held in Birmingham in 1990, and was attended by 50 MND researchers. From then on it has grown and grown, and is now a truly international event. In order to attract a wider international audience and invite local experts to speak the location changes each year. Previously it has been held in locations including Sydney, Chicago and Milan.

Last year in Brussels we had 848 people attend, showing how large the global MND research community has become. We expect a similar number of people to attend this year. Continue reading

Brussels sprouts poster prize stars

A few days before Christmas, I hope that you’ll forgive the obvious pun. Rather than the small green vegetable that you either love or hate, here I’m talking sprouts of new shoots of talent shown by the winners of the poster prizes. They were chosen from over 300 poster presentations at the International Symposium on ALS/MND held in Brussels at the beginning of December.

It was the second year that poster prizes were a feature of the conference. The purpose of the prize was three-fold: to increase the profile of the poster sessions of the meeting; to recognise the quality of the work presented there and to reward presenters of outstanding work. Continue reading

The Thinker – Session 7B End of Life Decisions

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Our interpretation of the famous sculpture of The Thinker by the French artist Auguste Rodin was chosen as the picture for the session at the International Symposium on ALS/MND on End of Life Decisions.

In a new format for the symposium, this session will take the form of a debate. Three distinguished speakers will discuss different perspectives of assisted dying. You will be able to follow comments on the #alssymp ‘hashtag’ on Twitter. The MND Association statement on assisted dying is on our website. One of the Association’s priorities is to ensure that more people with MND, where ever they live, will be able to access specialist and appropriate palliative and end of life care.

Our End of Life Guide was written to provide better information about the options and services available at the end of life, giving people the freedom of choice to make plans at a time of their choosing.

It’s great to be back! My role at the MND Association

L-R Leonard van den Berg, Pauline Frear and Steve Bell at the 24th International Symposium in Milan 2013

L-R Leonard van den Berg, Pauline Frear and Steve Bell at the 24th International Symposium in Milan 2013

Pauline Frear is PA to Brian Dickie, Director of Research Development, and the team’s administrator. Here she blogs about her role at the MND Association.

In 2007, after much deliberation, I decided to take a career break from my role as PA to the Chief Executive at the MND Association to study for a degree with the Open University (a goal that, I’m happy to say, is almost within my grasp!). Fast-forward nearly seven years and I once again find myself sitting at a desk in David Niven House – but it’s a different one!

Continue reading

The 25th International Symposium on ALS/MND hosted by ALS Liga België in Brussels (Belgium)

Evy Reviers is the Chief Executive Officer (CEO) of ALS Liga België – the Belgium equivalent of the MND Association. They are hosting the 25th International Symposium on ALS/MND in December 2014. Here she blogs about their role as this year’s host organisation.

ALS liga belgium logoThe renowned International Symposium on ALS/MND, organized by the MND Association in co-operation with the International Alliance of ALS/MND Associations, is the largest medical and scientific conference specific to MND. It is the premier event in the MND research calendar for discussion on the latest advances in research and clinical management.

The symposium will be held in Brussels (Belgium) from 5 – 7 December 2014, preceded by the 22nd Annual Alliance Meeting from 2 – 4 December. Continue reading

The International Symposium on ALS/MND

Every year in December the MND Association organizes the largest medical and scientific conference specific to MND in the world.

The International Symposium on ALS/MND attracts over 800 researchers, clinicians and healthcare professionals, representing the energy and dynamism of the global MND research community. The symposium in Chicago last year had a record attendance of over 900 delegates with 419 abstracts presented. This year’s event promises to be just as successful with a record number of 510 abstracts!

What is the symposium?

sympopromo

The aim of the symposium is to enable leading researchers around the world to foster strong collaborations and encourages the sharing of new knowledge of the disease as rapidly as possible. To find out more see our website.

This year’s symposium will be held in Milan, Italy from 6 – 8 December and we will be reporting live from the event via this blog. We will be blogging about the exciting clinical and scientific MND research developments discussed at the event; from biomarkers to clinical trials and genetics.

We will also be tweeting from the symposium, as well as posting updates leading up to the event, using the hastag #alssymp.

Abstracts

Abstracts or ‘scientific summaries’ are an overview of a particular piece of research. These summaries briefly explain a piece of research to give the reader a ‘taste’ of what is to come.

All 510 abstracts have been proof-read by myself, Lucy and Belinda in preparation for them to be published Open Access on 4 November 2013. Once published these abstracts can be read by the research community, whom can then register to attend the symposium if they want to find out more!

These abstracts give us an exciting ‘hint’ of what is going to be discussed at this year’s symposium but we won’t know the juicy stuff until the day so-to-speak.

Programme

As well as organising and processing all of these abstracts, we also have to compile a programme (that is now available to view online here). This programme shows the schedule of talks, themes and topics to encourage researchers to register to attend the event.

An experience!

Lucy Smith, Research Information Administrator

Lucy Smith, Research Information Administrator

This is Lucy’s first experience of the preparation of the symposium and she summarised her thoughts about the event below:

“I’ve found that organising the symposium is very much like organising a wedding! There’s a lot to do, but you can only do certain things at a certain time – which can be a bit manic at times! For example: Once the withdrawal deadline had passed we had to edit, proof read, check and number all of the abstracts in three weeks!

“I was surprised, being from a science background, that I found the clinical work more interesting than some of the scientific abstracts. In particular what I found interesting was how the work is really changing the day to day lives of people living with MND and making a difference to actual people.”

Milan has already broken the abstract record, we’ll have to wait until December to see if anymore records can be broken!

Reading the stars – why are ‘astrocytes’ toxic?

On the last day of the 23rd International Symposium on ALS/MND in Chicago last week there was an excellent session on ‘the role of non-neuronal cells’ – it was an exciting session – below is a flavour of some of the topics discussed.

As its name suggests, motor neurone disease causes the degeneration of motor neurones – the long nerve cells that carry messages from the brain to the muscles via the spinal cord. But motor neurones don’t exist in isolation. Particularly in the last five years or so we have learnt a lot about the contribution of glia to the development of MND. In health, the different cell types that are collectively known as glia (eg astrocytes, microglia and oligodendrocytes) protect and support motor neurones. We know that this changes in MND. It’s an exciting and fast moving area of MND research, where there is lots still to find out. So it was a treat to have a session of the Symposium dedicated to the discussion of the latest results.

It opened with a great overview of what we know so far about the role of astrocytes in MND from Serge Przedborski. (Astrocytes are called astrocytes due to their star shape when seen down the microscope). Leading on from the studies showing that the medium (fluid) that astrocytes grow in can damage healthy motor neurones, he set out to find out whether astrocytes (and the chemicals that they emit) are toxic or whether there is a lack of benefit. (Bearing in mind glia are sometimes called ‘support’ cells – this comment about the lack of benefit is pertinent).

 Using a clever assay, where it is pulled through a filter by spinning it, he showed that the astrocyte medium is toxic. So the next question was, what is it in the medium that makes it toxic? He and members of his lab looked at many possible components to check for their toxicity to motor neurones. The studies took over two years and were all negative “it’s too painful to list them all” he commented. “I had to change approach as I was risking the health of members of my lab!”

As he was describing the new approach I was reminded of the guessing game ‘animal, vegetable or mineral”. Is it a protein? was his first question, then the next was ‘is there an overall positive or negative charge to the protein?’ (some of the protein building blocks – amino acids – have a positive or negative charge, so the use of charge is a common way to separate them) and finally ‘how much does this protein weigh?’. The answers to these questions provided the first sort through before a second approach narrowed the search for the ‘toxic protein’ in astrocytes down to a choice of just nine possibilities. After looking at all nine in more detail, he found that a receptor on the surface of the astrocyte known as DR6 was responsible for its toxicity.

Dr Dan Blackburn from the Sheffield Institute of Translational Research, UK, described another approach to uncovering clues about why astrocytes are toxic – using an approach that looks at which proteins are made at a particular time called ‘gene expression’ profiling.

 Although the genes in each cell are there all the time, they are not read all at once. (In the same way that you won’t try and make every single dish in your recipe book simultaneously). So looking at which genes are read (known as gene expression) over the course of the disease leaves a detective trail to find out what caused the motor neurones to die.

Following on from earlier work in their lab, Dr Blackburn presented the trail of evidence from when a mouse model of MND first begins to show symptoms, and from a later time point, when the disease is far more advanced. He pointed the finger at abnormalities in cholesterol transport.

After you’ve finished reading the symposium articles that interest you, we’d be grateful if you could spare a few minutes to fill in our short online survey on our symposium reporting. Your comments really are useful and allow us to continually improve our symposium reporting. surveymonkey.com/s/alssymp 

Mastering Pac-Man

Growing up in a seaside town in the 1980s led to me spending a lot of my “formative years” in the local amusement arcades, playing iconic video games like Space Invaders (at which I was average) and Asteroids  (I was the kid to beat!). One game I never got the hang of was Pac Man, where you had to guide a munching yellow ball around a maze eating up lots of dots. I even bought a book ‘Mastering Pac Man’ which didn’t help much – I was just plain rubbish!

Pac Man chasing Dr Brian Dickie

Dr Brian Dickie and Pac Man

Talking about rubbish, fast forward 30 years and Prof Anne Simondsen from The University of Oslo is on the platform in Chicago describing the ways in which neurones deal with their cellular rubbish, such as poorly manufactured or damaged proteins.

Much as the dots are gobbled up by Pac Man, so cells employ a couple of basic ways to dispose of and recycle damaged proteins. One is a process called proteasomal degradation, which has been discussed on this website before by one of our guest bloggers, Prof John Mayer. However, some proteins, especially protein aggregates, are a bit too large and tough to be broken down by the proteasome, but they can be degraded by another process called autophagy – which can literally be translated as ‘self-eating’.

Prof Simondsen explained how aggregated proteins and even larger cellular structures can be packaged up for destruction by being encapsulated within membranes, forming structures called autophagosomes. These in turn seek out a structure called the lysosome, which contains digestive enzymes which break down the protein rubbish and keep the cell ‘spick and span’.

Using studies involving fruit fly models (a favourite model for cell biologists) she showed that the autophagy process declines with age, which is unfortunate because protein damage tends to increase with age. It was therefore no surprise that the level of autophagy in the brain was directly associated with the accumulation of protein ‘inclusions’, the health of neurones and the life expectancy of the flies.

Much of the evidence supporting a role for autophagy in neurodegeneration comes from the field of Huntington’s disease. Prof Simondsen explained how a particular mutated protein – called huntingdin – accumulates in the dying neurones and is a classic pathological hallmark of the disease. She demonstrated that autophagy normally plays a central role in the disposal of damaged huntingdin, but the system simply cannot cope with the amount of damaged protein, which starts to accumulate and literally ‘gunge up’ the cell. However, by stimulating the manufacture of additional autophagy machinery, the amount of aggregated protein can be reduced, helping to protect the neurones. This has so far only been shown in simple lab models of Huntington’s disease, but the encouraging results mean that further development to try and develop a treatment is underway.

So, could a similar approach be useful in other neurodegenerative diseases such as MND? Certainly, for some types of MND, such as those linked to a rare gene mutation called CHMP2B, it appears that a component of the autophagic machinery is impaired, which leads to protein build-up in cell models.

Dr Eiichi Tokada (Umea University, Sweden) provided further evidence that autophagy plays a role in disease progression in the SOD1 form of MND. By switching off a crucial component of the autophagy machinery, the disease progression in SOD1 mice was accelerated and their lifespan shortened. In addition, when he examined the spinal cords of the mice, he saw an increased presence of the characteristic SOD1 protein aggregates – a pathological hallmark of the disease.

Dr Faisal Fecto (Northwestern University, USA) provided evidence from a third genetic cause of MND. He showed how mutations in the Ubiquilin 2 gene disrupt the autophagy pathway by stopping the autophagosomes from linking up with the lysosomes.

So, it certainly seems that autophagy has a role to play in some of the rarer familial froms of MND. It remains to be seen to what extent it is involved in MND more generally, but it may mean that the potential treatment strategies being developed for Huntington’s disease may offer future opportunities for MND as well.

Our International Symposium website news stories:

International Symposium closes in Chicago

International Symposium focuses on clinical trials

International Symposium focuses on carer and family support

International Symposium begins in Chicago

Researchers unite at our International Symposium on MND

After you’ve finished reading the symposium articles that interest you, we’d be grateful if you could spare a few minutes to fill in our short online survey on our symposium reporting. Your comments really are useful and allow us to continually improve our symposium reporting. surveymonkey.com/s/alssymp

A prize-winning story worth repeating

Many congratulations to Rosa Rademakers from Mayo Clinic Florida USA, winner of this year’s Paulo Gontijo Young Investigator award. She won the award for her work on co-discovering the gene defect in C9orf72.

As part of her prize (in addition to a medal and a cheque to continue her work) she gave an overview of the research at the opening session of the 23rd International Symposium on ALS/MND. The story was one of looking in some unusual places as well as all the obvious places to locate a gene defect had been thoroughly searched by researchers around the world. Dr Mariely DeJesus Hernandez in Dr Rademakers lab spotted something odd about the way the C9orf72 gene was inherited from the respective parents of someone with MND. She should’ve seen the copy from the mother and the copy from the father, but using their usual laboratory experiment, a copy of the gene from one of the parents wasn’t found.

One explanation for this unusual finding was that there was a ‘repeat’ sequence – that the experiment she’d run wasn’t set up to find. So, thanks to all the previous reports in the literature, Dr Rademakers and colleagues tried a lab experiment that other people had used to detect repeat sequences in other (ie non-MND) diseases. Use of this new lab experiment led to them identifying the presence of a long repeat in people with MND but not in unaffected people.

After a brief history of the discovery of this important gene defect, Dr Rademakers went on to give an overview of research around the world. It was interesting to see that this has worldwide significance. She showed a graph representing the percentage of cases of people with a family history of MND where C9orf72 had been discovered. The bottom line was that C9orf72 repeats are found in 34% of people who had MND with a family history of the disease and in 26% of people who had FTD with a family history of the disease.

But although much has been achieved in identifying this gene defect and the colossal amount of work worldwide since its discovery, in her final slide, Dr Rademakers reminded us that there’s much still to be done. For every concluding comment there was a list of two or three questions that the new information provoked.

This talk was an excellent starting point for a topic that was and will be repeated many times (pun intended) through the International Symposium.

Our International Symposium website news stories:

International Symposium closes in Chicago

International Symposium focuses on clinical trials

International Symposium focuses on carer and family support

International Symposium begins in Chicago

Researchers unite at our International Symposium on MND

After you’ve finished reading the symposium articles that interest you, we’d be grateful if you could spare a few minutes to fill in our short online survey on our symposium reporting. Your comments really are useful and allow us to continually improve our symposium reporting. surveymonkey.com/s/alssymp

One week to go until Chicago!

November has been an incredibly busy time for us, not because of Christmas, but because the 23rd International Symposium on ALS/MND is now only one week away! We’ve been incredibly busy building up for this year’s symposium including; preparing the final abstract book, promoting the #alssymp hashtag on Twitter and gathering enough information to support Belinda before she flies off to Chicago.

Abstracts, abstracts, abstracts!

As well as all of this, the abstracts were, for the first time, made available online, with free open-access, earlier this month. This was a milestone for us as previous years we just had hard copies of all of the abstracts available at the symposium. However, with advances in mobile technology and WiFi, this year it was decided that only the platform presentations would be available as hard copies during the symposium and all abstracts would be available online and free to view for all.

You can view and download the abstracts online now via our website.

Reporting LIVE

We, the Motor Neurone Disease Association, will be proudly reporting LIVE from the symposium through this blog. We will be reporting on a variety of interesting topics and talks so that you can be up to date with what is happening in terms of MND research.

If you want to follow the symposium on Twitter, you can do so by following the #alssymp hashtag.