Heads up! The Sheffield Support Snood

5 b (3)During the second day of the symposium Association-funded researcher, Dr Chris McDermott, presented his highly anticipated research on a new neck support for people living with MND.

Our healthcare research aims to lead to better symptom management and support for people living with MND. We know that neck weakness is an extremely distressing problem in MND and it is very difficult as a clinician to treat this.

Dr Chris McDermott from the Sheffield Institute for Translational Neuroscience (SITraN) said that he wanted to address this problem by working with people living with MND to develop a solution. Read More »

Neurofilaments show promise as biomarker candidates for MND

TiskSaturday afternoon saw the 25th International Symposium on ALS/MND expand from two to three sessions running in parallel. Times have changed from the early years of the meeting when sessions finished at lunchtime on the second day because there wasn’t enough stuff to talk about! Rather than flitting between three different lecture halls, I opted to immerse myself in the Biomarkers session, especially since the session was being kicked off with presentations from MND Association funded investigators. Read More »

Science behind the picture – Genetics and Genomics

Manhattan skyline
Manhattan skyline

The picture of the New York skyline is our representation of the ‘manhattan plots’ that are likely to be a feature of Session 7A of the symposium. Unravelling the genetic contribution to MND is as much about maths as it is about DNA. A common type of genetic analysis (known as a ‘GWAS’) compares DNA samples from 1,000s people with MND vs 1,000s of controls. If there is a genetic variation that’s different between these two groups, the bigger the difference, the higher up the ‘dot’ appears on the chart – or in the case of the Manhattan skyline, the higher the skyscraper! Will any hits the scientific equivalent of the Chrysler Building be found? Read More »

The Thinker – Session 7B End of Life Decisions


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.

Assistive technology and the power of voice

4 b (3)Our general election campaign for 2015 is featured around communication because we believe that nobody should have to lose their voice to MND. The afternoon session on Friday 5 December during the 25th International Symposium on ALS/MND also focussed on this topic.

Around 80-95% of people living with MND will face communication problems as their speech deteriorates. Through local and national campaigning we can give people living with MND a voice; be it signing the MND Charter or by influencing the 2015 general election campaign. Read More »

Science behind the picture – the poster session

International Symposium on ALS/MND poster session
Contemplating art in a gallery

After seeing the works of art on the wall – I wonder if the people in the picture will be inspired to buy a poster in the shop on the way home. Posters come in all shapes and sizes from B&W Athena posters, to Hello Kitty. In Brussels the posters are still works of art, beauty and most definitely creativity – but they are of scientific and clinical results of MND research, including examples of good practice that other delegates can learn from. After visiting the over 300 posters on display at the 25th International Symposium in Brussels, many researchers will come away with inspiration and enthusiasm for their corner of the MND jigsaw. Read More »

Science behind the picture – ‘Autophagy’

Pac man representing autophagy
Pac man representing autophagy

Session 4A at the International Symposium on ALS/MND in Brussels is on the topic of autophagy. ‘Autophagy’ literally means that the cell eats part of itself, so the picture of the 80s game pac man where the aliens are being eaten was a catchy way to illustrate this session. A characteristic sign of motor neurones affected by MND, as seen down the microscope is the presence of clumps of protein, but it is a puzzle about how those proteins got there. Is too much protein produced, or has the cell’s way of getting rid of the normal level of protein recycling gone wrong? One way of proteins being recycled is that they are digested down to their amino acid building blocks by a process called autophagy. The presentations in Session 4A looks at how the process of autophagy goes wrong in MND – which of the known mutations (eg FUS, C9orf72 and SOD1) affects it  – for good or bad!

Thanks to Andrew Greasley for creating the pictures for all these science behind the picture posts.

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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.


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? Read More »