Just the TONiC for quality of life in MND

Following on from the two talks on genetic testing; the first day of the 24th International Symposium on ALS/MND continued with a number of high quality research talks on topics such as screening for cognitive change and RNA processing.

Miss Hikari Ando (The Walton Centre NHS Foundation Trust) presented her research on Friday 6 December 2013. Following on from a previous talk on quality of life she pitched her talk as ‘What people living with MND thought of quality of life’ and explained that ‘quality of life is not just something of physical decline’.


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Genetic testing – guidelines needed suggest researchers

The 24th International Symposium on ALS/MND began in Milan today with a record number of over 950 delegates attending to hear the latest news in MND research.

Inherited MND is a rare form of MND characterised by a family history of the disease. Over recent years more and more genes have been discovered, which has lead to an increase in individuals wishing to pursue genetic testing.

Read more about inherited MND on our website

A genetic test consists of a sample, which is then sent off to a genetic laboratory. Here the blood sample is then screened for the MND-causing genes.

The gene that is faulty in inherited MND can differ between one affected family and another. Mistakes in genes called SOD1, TARD-BP, FUS and C9ORF72 between them account for about 65 – 70% of cases of inherited MND. Scientists have yet to identify the gene defects that cause the remaining 30%.

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The Allied Professionals Forum

MND Association Trustee, Julie Draper, attended the International Alliance of ALS/MND Association’s Allied Professional Forum (APF) yesterday. This one day event aimed at healthcare professionals had a number of inspiring talks; including one by Association-funded researcher Dr Christina Faull based at the Leicestershire and Rutland Hospice – LOROS.

Dr Christina Faull, Leicestershire and Rutland Hospice (LOROS)
Dr Christina Faull(right), Leicestershire and Rutland Hospice (LOROS)

Here Julie blogs about her experience:

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Looking forward to the Allied Professionals Forum

MND Association trustee, Julie Draper, will be arriving in Milan on Wednesday evening in preparation for the Allied Professionals Forum (APF), taking place on Thursday 5 December.

This one day meeting organised by the International Alliance of ALS/MND Associations focuses on the practice and experiences of healthcare professionals involved in the care and support of people living with MND.

You can read the programme for the day, as well as the abstracts, here.

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The Symposium – a grantee’s perspective

The 24th International Symposium on ALS/MND is now only one week away! We’re busy making final preparations and getting ready to report from the event, whilst researchers around the world are packing their suitcases, finishing off their posters and tweaking their presentations.

Janine Kirby

Dr Janine Kirby
Dr Janine Kirby (SITraN)

But, what is it like to attend the symposium? What do researchers gain from attending? One of our grantees, and member of our Biomedical Research Advisory Panel (BRAP), Dr Janine Kirby (Sheffield Institute for Translational Neuroscience) will be attending this year’s event. Dr Kirby has kindly agreed to explain why she attends the symposium and what researchers gain by attending this prestigious event:

The symposium gives you the opportunity to surround yourself with the latest motor neurone disease research from across the world in one location. From advances in genetics to the latest healthcare research the symposium really does have it all!

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11 years on and back to the Symposium

It’s not just researchers, clinicians and healthcare professionals who attend the International Symposium on ALS/MND. One of our trustees, Julie Draper, will be attending this year’s symposium after a break of 11 years to find out the latest developments and view the symposium first hand as a trustee.

Here Julie explains a bit about herself and why she’s attending the symposium:

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The symposium programme committee

The 24th International Symposium on ALS/MND is now only one month away and we are now beginning to make the final preparations for the meeting.

All 497 abstracts were published online yesterday and are available by means of open access via our website. These abstracts have had a long journey from when they were originally submitted back in May and judged by the symposium programme committee in June.

But who are the symposium programme committee and what do they do? Dr Ludo Van Den Bosch (Katholieke Universiteit, Leuven), who is a volunteer on the committee, kindly agreed to tell us more.

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Demystifying the symposium

The International Symposium on ALS/MND is the largest MND-specific


conference in the world, which is expected to attract over 900 delegates this year. The planning of the Symposium is a year long event and is pretty much like organising a film premiere, with a number of different teams involved. The ‘symposium team’ ranges from the Conference team to volunteers at the host Association, and from the programme committee to the Research team.

Louise Hough (Communications and Information Assistant at the MND Association) asked us a number of questions about the symposium. We thought you’d be interested in the answers too which we’ve posted below.

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Abstract statistics

In the heat of August (for once I can actually write that, without my fingers crossed behind my back!), statistics relating to the production of the must-have document for the 24th International Symposium on ALS/MND in Milan in December might seem extremely ‘abstract’!

Abstracts are scientific summaries of the research that will be presented at the largest annual scientific conference on MND, organised by the MND Association. We have had a bumper year for people wishing to present their work, with over 500 summaries received. sympopromo

In the last month, my colleagues Lucy, Sam and Pauline have been busy preparing the text of these summaries, to send to the publisher. We pressed the ‘send’ button on the 15 August, much to the relief of all concerned.

They will be published online for all to access and download at the beginning of November. But if you’re curious to see what they look like, the presentations from last year are still available.

Here’s a countdown of some of the abstract statistics so far:

  • 750, 000 + words read in total by the research team at the MND Association between May and August
  • 189, 618 words were sent to the publishers for the abstract book, in the form of a 357 page document (Font: Times 10 pt in case you were wondering.. !)
  •  3, 515 different researchers have contributed to the abstracts, making an average of 7 authors per summary – showing the truly collaborative nature of MND research
  • 103 talks are scheduled in the programme, now available to view online on our website
  •  320 poster presentations in the abstract book, with over 70 additional posters to be presented on care practice and work in progress

We look forward to sharing with you our progress as we prepare for Milan. You can also follow the story on Twitter using the #alssymp hashtag.

A 'Word Cloud' created with Wordle.net
A ‘Word Cloud’ created with Wordle.net

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?


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 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.


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!