What’s the story with CuATSM

There has recently been a flood of news stories on the outcomes of the Australian Phase 1 clinical trial investigating Copper ATSM (CuATSM) which is a small man-made compound that can selectively deliver copper to cells. The results were first presented at our International Symposium in Glasgow back in December.

MND is a terrible disease and anyone affected by it is looking for good news. We really hope that CuATSM will provide a new treatment for MND that is going to have a positive effect on people’s disease progression.

However, CuATSM is not yet at a stage where a clinician can prescribe it as a treatment. Drug development is a long journey, where any drug has to pass important rigorous checks before approval as a medicine. This trial is an important ‘first’ in the drug development process.

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Tissue biomarkers: Highlights from Glasgow

This blog is part of the ‘Highlights from Glasgow’ collection of articles, where you can read about the content of some of the talks and posters presented at the 29th International Symposium on ALS/MND.

Around the globe, teams are working to find tissue biomarkers for MND and there some promising candidates coming through, some of which were explored at session 8C of the Symposium: Tissue Biomarkers.

We first heard from Rebekah Ahmed (C83), who presented her data on possible neuroendocrine and metabolic biomarkers. Ahmed and her team analysed several proteins related to these systems in the blood of 127 people with either MND or MND with FTD and compared them to controls. The Neuropeptide Y protein (NPY), which is related to eating habits and food intake, was found to be higher in people with MND and MND-FTD, and lower in people with FTD, shining the light on a possible biomarker. All patients also had an increase in leptin and insulin levels, highlighting the need to examine how these neuroendocrine changes affect underlying disease pathology.Read More »

Psychological and emotional wellbeing: Highlights from Glasgow

This blog is part of the ‘Highlights from Glasgow’ collection of articles, where you can read about the content of some of the talks and posters presented at the 29th International Symposium on ALS/MND.

Written by Kaye Stevens and Rachel Boothman

At the 2018 International Symposium on MND in Glasgow, it was positive to see an increase in the number of studies about the psychological and emotional impact of MND/ALS. Read about our highlights below.

From the expected to the unexpected, such as studies which considered the effect of gut health on brain and mood.  (C2) J Cryan – As stress and other factors such as medications can affect gut bacteria, there is a need to maintain a healthy microbiome. This led to a recommendation for sharing refined human poo. Coming your way soon could be ‘Crapsules’ and supplements such as ‘Poopulate’.

(C40) Jane Parkin Kullmann – In other work on stress, researchers in Australia found that stress is not necessarily a risk factor in the development of MND/ALS, indeed it appears that people with the disease may actually be more resilient. Further study is ongoing to determine whether this might indicate a genetic difference.Read More »

Technology and MND: Highlights from Glasgow

This blog is part of the ‘Highlights from Glasgow’ collection of articles, where you can read about the content of some of the talks and posters presented at the 29th International Symposium on ALS/MND.

Where to start on a subject as wide and varied as technology and MND?

Indeed, this problem is not just limited to a simple blog post, it is a challenge for us as an MND charity faced with a proliferation of potentially beneficial technological developments in smartphones, wheelchairs, and exoskeletons to name but a few.

Fortunately, there is a fundamental question that can help us make sense of it all and it is a question that stems from our Association values – What does this mean for people with MND? I’ll be trying to answer this question as part of my summary of technology talks from our 29th International Symposium.

Much of the content that was presented related to the use of technology in clinical trials, so let’s start by considering clinical trials and what we want from them:

  • We want them to be efficient and report results quickly – this means they will be cheaper, so we can do more of them and secure a cure or effective treatment for MND more quickly.
  • We also want the trials to be reliable and give accurate results whilst allowing as much patient participation as possible.
  • Above all, we want trials to translate into tangible change such as clinical developments that improve quality of life or the introduction of an effective treatment for MND.

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Clinical trials: Highlights from Glasgow

This blog is part of the ‘Highlights from Glasgow’ collection of articles, where you can read about the content of some of the talks and posters presented at the 29th International Symposium on ALS/MND.

In the Clinical trials and trial design (4B) session we heard from two speakers looking at ways to improve current design of clinical trials. In his plenary talk, Mahesh Parmar (C20) provided his perspective on the necessity of changes from his experience working on cancer trials, highlighting that any efforts to improve clinical trials should be focused on Phase 3 where the most money and time is spent. One solution that stuck with a lot of clinicians attending Prof Parmar’s talk was the design used in the STAMPEDE trial, a large clinical trial assessing effectiveness of new treatments for people affected by prostate cancer, which has been running since 2005. The innovation of this approach is the ongoing protocol that allows to test multiple treatments within the same established clinical trial, allowing new drug candidates to be tested (relatively) straight away, avoiding the creation of a brand new clinical trial. This design improves efficacy of testing new treatments, systematic approach to testing, and access to a large pool of participants who could take part in multiple treatment trials over time.

Brian Dickie, the Director of Research Development at the MND Association said: “Prof Parmar’s presentation generated a lot of interest amongst clinicians who are regularly involved in MND trials and there was a strong feeling that this is the direction that we need to be taking with MND as it could increase the efficiency and reduce the cost. That said, it will take a while to put the building blocks in place and we certainly wouldn’t want to hold up trials that are already in advances stages of planning, so I would expect to see a gradual introduction of changes to trials design over the coming years.”

You can learn more about the multi-arm multi-stage trial design from Prof Parmar here.

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Lifestyle & environment: Highlights from Glasgow

This blog is part of the ‘Highlights from Glasgow’ collection of articles, where you can read about the content of some of the talks and posters presented at the 29th International Symposium on ALS/MND.

In the Epidemiology session (5C), several talks focused on the risk associated with various lifetime events, and the demographics of people who develop MND categorised by onset at various body regions. Susan Peters (C37) and her colleagues studied a group of 1,500 people with MND and 3,000 control participants, and found that people who had suffered head trauma after the age of 55 had an increased risk of developing the disease compared to those without this type trauma. They further found reduced risk in people currently/recently taking antihypertensive and cholesterol-lowering medication, but this risk was significantly increased in people who were taking these medications earlier in life. These findings now need to be explored further to investigate the underlying mechanisms that would explain these differences.Read More »

The effects of ashwagandha in a SOD1 mouse model of MND

The research team frequently gets asked about the effectiveness of alternative therapies and their use as treatments for MND. Here we report on a recent paper that looked at the effects of ashwagandha, or Indian ginseng, in a SOD1 mouse model of MND.

For around 3000 years Withania somnifera (WS), commonly known as ashwagandha or Indian ginseng, has been used in Ayurvedic and indigenous medicine around the world, and is thought to have powerful rejuvenating and life-prolonging qualities. But there is increasing evidence which suggests that the plant extracts (root, leaf or fruit) also have neuroprotective properties, and this has been demonstrated in several models of neurodegenerative diseases including MND.Read More »

MND and the mind – who is affected?

Motor Neurone Disease (MND), as the name suggests, is known as a disease of motor neurons, a specific type of neurons that co-ordinate our voluntary movement, leading to loss of the ability to move, speak and breathe. And perhaps because the main focus often falls on the rapidly-progressing physical symptoms and their management, the way MND affects the mind has often be overlooked.

brain networkMost literature on MND states that certain behavioural and cognitive (thinking) problems affect up to 50% people with MND, out of which 15% have a co-occurring diagnosis of frontotemporal dementia (FTD). Adding to this, a recent paper by Dr Christopher Crockford and colleagues, published in the journal Neurology, found that up to 80% of people living with MND will have some form of cognitive or behavioural impairment by the final stage of their disease (or in other words, only 20% will have an intact cognitive and behavioural processing).Read More »

MND research around the world

worldmap annotated and marked

In the last decade, the MND Association has invested millions in research within the UK and across the world. We are a leader in the funding and promotion of cutting-edge MND research and, with over 30 years experience of identifying the most promising projects, we only fund and support scientific and medical research of the highest quality and relevance to MND.

And the great news is, we are not the only ones!

alliance_logo_landscape_rightThe International Alliance of ALS/MND Associations has 54 member institutions, in 40 countries around the world – from Mongolia to Mexico, Malta to Malaysia – who are supporting, funding, collaborating in and carrying out MND research, and/or offering much needed care and support to people with MND and their families.

All the institutions listed by the Alliance are shown on the map above. If you want to take a look at some of these, they are easy to access through the International Alliance website. Some of the websites are not in English but you can use the Google Translate Web tool to translate the entire site into English (or any other language).

So let’s take a whistle-stop tour and explore some of the latest research and support projects that other institutions around the world are involved in. The institutions I mention are shown on the map with a yellow pointer.Read More »

Why do we need the MND Register?

Whilst we believe that there are currently around 5,000 adults in the UK living with MND at any one time, the precise figure is not known as there is no single source of information to confirm it. The MND Register of England, Wales and Northern Ireland is set to find a more accurate figure of the true number of people living with the disease. This research study, funded by the MND Association with the support of The Betty Messenger Charitable Foundation and a family trust that wishes to remain anonymous, is jointly led by Professor Ammar Al-Chalabi at King’s College London and Professor Kevin Talbot at the University of Oxford.

Despite our increasing knowledge of the role that genetics plays in MND, there is strong evidence to suggest that MND is a complex disease that is triggered by a combination of genetic predisposition to the disease and exposure to external environmental influences such as occupational and lifestyle factors.Read More »