It’s that time of the year again… #alssymp

It was only one week after the 27th International Symposium on ALS/MND in Dublin had ended when we started the next stage of planning for Boston 2017. Now a year has passed and we are here again, waiting to learn about the exciting research that is happening throughout the world. But before we start talking science to you, I thought I would give you a whistle-stop tour of what it takes to organise the Symposium.

It all starts with a selection of a venue at least three years prior the event. This has to tick a number of boxes, including appropriate number and size of rooms for platform and poster presentations, a place for exhibitors, lunch, ease of access both inside the venue as well as outside with respect to the location from transport facilities and so on. A number of site visits are organised to ensure that we are familiar with the venue so that we can plan the location of the platform sessions, locations for exhibitors, lunch, meetings, and networking. And then the year of the event comes…Read More »

Focus on the research presented in posters in Dublin

Over 100 talks were given at this month’s International Symposium on ALS/MND in Dublin. There were also over 450 posters of research being presented too. Time in the conference programme was allocated on Wednesday and Thursday evening (day 1 and day 2 of the 3 day conference) to visit the posters – you might think that scheduled at the end of the day they would be less well attended – but not a bit of it! It was an extremely loud and buzzy part of the conference.

Below is a brief round-up of some of the posters that caught my eye.Read More »

Choices around invasive ventilation

Mechanical ventilation for people with motor neurone disease (MND) is a sensitive and little discussed topic. Yesterday’s respiratory management session of the International Symposium on ALS/ MND began with several interesting and thought provoking presentations on the subject. Pia Dryer from Aarhus University Hospital in Denmark presented the results of a review of their respiratory service over 17 years, including a discussion of invasive ventilation. Dr Mike Davies is a respiratory consultant at the Papworth Hospital in Cambridge in the UK, where he and his colleagues run a weaning service supporting people to come off invasive ventilation.

Choosing ventilation, or not

Summary of respiratory choices in Denmark
Summary of respiratory choices of people with MND in Denmark

Over 400 people with MND had been treated at the Home Mechanical Ventilation service since its inception in 1998, Pia Dryer explained at the beginning of her talk. During the discussions in clinic people had the choice about the options available for managing their breathing symptoms, some chose no ventilation, others non-invasive ventilation (NIV). From NIV some then progressed to invasive ventilation or tracheostomy, and finally some chose to go straight to invasive ventilation. People with MND had the choice of all of these options, 90 of them chose either NIV and then invasive ventilation or invasive ventilation first without NIV. The talk was really brought to life by showing clips of Birger Bergman Jeppesens the star of a number of films on YouTube. He was the first patient to ask for invasive ventilation at the Aarhus clinic. Dr Dreyer went on to talk about the legal and ethical aspects of withdrawing ventilation from people with MND at the end of life, a topic that was discussed in more depth later in the session.Read More »

Update on gene therapy approaches to treating neurodegenerative disease

Every day there are two sets of talks going on at the same time during the International Symposium. On Saturday morning there was a symmetry to what was being discussed in these parallel sessions. Both were talking about the inherited form of motor neurone disease (MND). One as reported from Sara’s blog was from the clinical perspective of talking through the possibilities and implications of having a genetic test, if the inherited form of MND runs in the family. I was in the other set of talks going on – exploring ways to develop treatments for inherited MND.

For those with inherited MND there are not currently any treatments to prevent the effects of the gene damage that is being passed from one generation to the next. However, research is underway to find such treatments. As these treatments are, by definition, designed to alter how these faulty genes work, they’re collectively known as gene therapy.

Different approaches in gene therapy

All three talks in this session of the symposium talked about a different, complementary approaches. Adrian Krainer spoke about ways to alter how genes are read. In the following presentation Brian Kaspar explained his research into ways to get copies of the healthy, unaffected gene into the body and working to counteract the damaged gene. They both showed how gene therapy might work in the neuromuscular disease spinal muscular atrophy (SMA), however the principals of how they work can be applied to MND.Read More »

Improving the classification of ALS – can we make it logical?

Yesterday at the International Symposium on ALS/MND Prof Ammar Al-Chalabi (Director of King’s Care Centre and Professor of Complex Genetics at King’s College London) cautioned the motor neurone disease (MND) research community about the confusing way we describe this disease we are all fighting. He started his talk by showing a standard definition of what MND is, and then pointed out some of the areas that were inconsistent – or has he put it, illogical.

For example is MND described by: whether it affects the motor neurones running from the brain to the spinal cord (upper motor neurones) or from the spinal cord to the muscles – whether that’s in our hands, arms or feet (lower motor neurones)? Or is it defined by where the symptoms appear – in what Prof Al-Chalabi described as the geography – either with speech and swallowing problems, or foot drop, or clumsiness / loss of dexterity in the hand?

Asking the Dr Spock question..

To illustrate his point he shared the results of a survey he’d carried out with over 100 neurologists across Europe, North America and Australia. Firstly he asked them what terms they used to give definitions of MND, ranging from amyotrophic lateral sclerosis (ALS), primary lateral sclerosis (PLS) and progressive muscular atrophy (PMA) to ‘classical’ MND – from a list of 26 descriptions, all of them were used!Read More »

Changing the way we think about the causes of MND

Adult onset condition, those with genetic mutations associated with the disease don’t get it until they’re adults, starts in one place and then it spreads, once it occurs the progression is usually relentless….   what condition am I describing?

Professor Neil Pearce’s point in his talk at the opening session of the International Symposium on ALS/MND was that he was describing both motor neurone disease (MND) and also cancer. Although the conditions are very different, as an epidemiologist, spotting patterns and trends to help identify the cause of diseases, it gave him food for thought.

Working with Prof Ammar Al-Chalabi, he decided to apply a method used to help give a framework to understanding the causes of cancer to MND. “The originality of this work is not from the method itself, it comes from applying it to MND” he explained. Beginning by reminding us of work that he reported last November, he went on to describe further work in this area.Read More »

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.Read More »

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. Read More »

Is infection making a bad situation worse?

I think Brian Dickie must have planned the early morning slot of the International Symposium in Brussels as a talk that would make delegates sit up and take note. Southampton based Professor Hugh Perry’s presentation certainly made me do that on Sunday morning, the last day of the meeting.

His presentation was on the role of inflammation in neurodegenerative disease. ‘Most of what I’m going to talk about is not about MND’, he commented, ‘but I hope that it will have some resonance for you’. He started off talking about prion disease. In particular he is interested in cells that are called microglia that exist in the brain and spinal cord.

Glial cells

Motor neurones are supported by cells called 'glial cells'
Motor neurones are supported by cells called ‘glial cells’

Perhaps about ten years ago the MND research world found out that it wasn’t just motor neurones we should be paying attention to in MND. There are cells called glial cells that support the function of motor neurones and come in all shapes and sizes in different parts of the brain. The whole set of talks in this session were dedicated to discussing their role in MND. Read More »