Welcome to the International Symposium on ALS/MND in Dublin

Today marks the beginning of the next year in MND research around the world, or at least it certainly feels like that! It is the first day of the three day, international MND research conference that the MND Association of England, Wales and Northern Ireland is immensely proud to organise. Continue reading

Working together towards a world free from MND

During MND Awareness Month we are highlighting some of the research the MND Association funds in our ‘Project a Day’ series. Today, on global ALS/MND awareness day, we wanted to give you a look at the research into motor neurone disease taking place elsewhere.

Thousands of researchers across the globe are working towards a world free from MND. Rather than tell you each of their stories, we have gone to those that fund and facilitate this research, and asked them how their efforts bring us closer to figuring out the causes of MND, and finding treatments for this disease.

“I find huge inspiration in the knowledge that when I finish my work for the day, the MND researchers in Australia are just beginning theirs.” Prof Martin Turner, University of Oxford Continue reading

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! Continue reading

Season of mists and mellow fruitfulness…..and prizes….

The fantastic news that Patrick Joyce and his co-inventors have won the 2015 Hackaday Prize for their ‘Eyedrivomatic’ invention is one of a number of research prizes announced this autumn.

Martin Turner award

Prof Martin Turner receiving his award from Prof Jane Dacre, RCP President

At the beginning of November Prof Martin Turner was presented with the Graham Bull Prize for Clinical Science by the Royal College of Physicians (RCP). The Prize is awarded to a member of the RCP under the age of 45 who has made a major contribution to clinical science.

The winner of the Graham Bull Prize is also invited to deliver the prestigious Goulstonian Lecture, an annual lecture given by a young RCP member that dates back to 1635 and the list of previous speakers reads as a ‘Who’s Who’ of the history of British Medicine!

Those of you who know Martin, in particular the many participants who volunteer for his BioMOx research programme will be pleased to see his new title: he was awarded the title of Professor by the University of Oxford in July this year. Aren’t Professors getting younger looking these days…! Continue reading

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

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. Continue reading

What is needed to advance a drug candidate into clinical trials?

The 25th International Symposium on ALS/MND began today in Brussels, Belgium. More than 900 delegates joined the opening session to hear Dr Alfred Sandrock from Biogen Idec’s opening talk.

drug

The only proven drug for MND is riluzole. This is the only treatment to have passed all stages of clinical trial testing, showing it to be both safe and beneficial in MND. New treatments are desperately needed, but what is needed to advance a treatment that has shown promise in animals to humans?  Continue reading

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

Interview with the Conference and Events team

Chris Maden is the Association’s Conference and Events Administrator. As Evy mentioned in her blog earlier today, preparations for the 25th International Symposium on ALS/MND in Brussels are well underway! Here we interview Chris about the role of the Conference team in this annual event. 

Left to right: Jasmine Harwood, Pam Aston, Chris Maden

Left to right: Jasmine Harwood, Pam Aston, Chris Maden

What is the role of the Conference team? The conference team are the logistics team, we source the venue, complete the registrations, liaise with the venue and with 3rd parties.

How long does it take to organise the symposium/ how much forward planning? The symposium planning begins 3 years before the event with location and venue finding. Then as the event gets nearer the registration process is setup and all the back end infrastructure is put in place.

As well as organising the venue and registration, what else do the Conference team do during the symposium? On site we manage the registration and make sure that the venue respond to any issues that crop up. We are the first in the venue and the last to leave!

What is your most memorable symposium moment? Whilst in a planning meeting for the Japan symposium, looking up and finding the room full of hotel staff – they had entered the room completely silently and were waiting for a briefing meeting!

What are your expectations for Brussels? Any challenges? With Brussels being held in a convention centre, registration will be a challenge as we will be unable to capture delegates as they check into their hotels!

Follow the Conference team on Twitter: @mndconference

Thank you for reading our ‘blog a day’ this Awareness Month. We would gratefully appreciate your thoughts and feedback via this short 2 minute survey.

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