New research projects agreed to help improve palliative and end of life care

Today we announced the results of an exciting new funding partnership with Marie Curie. Together we will be co-funding three research grants that help to answer some questions that people with MND identified as a priority for end of life care research. This is the first time that the MND Association and Marie Curie have worked together with a joint funding call. Each organisation has committed an equal amount of money to the funding of these projects, a total cost of £450,000 over the duration of the projects.

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The MND Register of England, Wales and Northern Ireland

What is the MND Register?

The MND Register is a major five year project that aims to collect and store information about every person living with MND in England, Wales and Northern Ireland. It is led by world-class MND researchers Prof Ammar Al-Chalabi and Prof Kevin Talbot, at a cost of £400,500 (our grant reference: 926-794).

Why is it important?

MND is believed to affect 5,000 people in the UK at any one time, however the true figure is not known as there is currently no way of recording this information. The register aims to provide us with the true number of people living with MND in the UK.

The information collected will answer questions about how many people have MND in different areas, how the condition progresses, and how the disease can affect people. The register will connect people with MND to researchers, including those conducting clinical trials, and will provide valuable information to guide the future development of care services.

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How will information be collected and used?

The register will be advertised nationally to all people with MND and related healthcare professionals. People with MND will be provided with detailed information about the register, and after some time for consideration, they can agree to take part. Their information will be recorded onto a secure database, either by a healthcare professional, or by the person with MND themselves through a register website (this will then be checked by a healthcare professional). Continue reading

Is frontotemporal dementia different when found with MND?

Some people with MND develop an increasingly recognised form of dementia, known as frontotemporal dementia  or FTD (for more information visit http://www.ftdtalk.org/). The main symptoms of FTD include alterations in decision making, behaviour and difficulty with language.

The relationship between MND and FTD is not well understood. Prof Julie Snowden and PhD student Jennie Saxon at the Cerebral Function Unit in Salford (University of Manchester) are aiming to establish whether MND combined with FTD is subtly different to when FTD is found on its own (our grant reference: 872-792).

People diagnosed with FTD-MND, with FTD alone, and those with no form of dementia will perform a series of short cognitive tasks. These will test things including a person’s ability to recognise emotions, draw inferences about the thoughts of others, their ability to concentrate, organise actions and understand language. Continue reading

CALL-Me. Care Augmentation by Location-Linked Messaging

Happy Father’s day! If you’ve got your dad a smartphone, or another hi-tech gadget, then this blog is perfect for you! Prof Ammar Al-Chalabi is a Professor of Neurology and Complex Disease Genetics at King’s College London. He is also Director of the King’s MND Care and Research Centre in London. Here he blogs about his Association-funded research into the development of a smart phone app for MND.

A new trial is about to launch to see if a smartphone app can help people with MND. What does it do and how could it be useful? Continue reading

One week on – Reflections on my first experience of the International Symposium on ALS/MND

Our recent blog articles describe lots of fascinating science and the progress in the care and treatment of MND/ALS that was presented at the symposium.  Personally, another really positive aspect was the opportunity to meet some of the researchers face-to-face. This included several senior scientists and clinicians whose work we support, some of whom gave lectures or chaired sessions. The symposium also gave presentation opportunities to PhD students and post-doctoral scientists, some of whom were attending their first International Symposium. We invited several from the UK to an ‘ice-breaker’ social on the Friday evening before the main lecture sessions began. Not all were able to attend, but a good group gathered with us, getting to know each other, and we met others later as they presented their posters. 

Sheffield University was well represented, including current grantees Emily Goodall and Clare Wood-Allum who both presented posters. Newer to ALS research was Guiseppe (‘Bepe’) Battaglia part of a cross-disciplinary group of collaborators who call themselves ViNCeNS for ‘Virus-like Nanoparticles for targeting the Central Nervous System’ with a website at www.vincens.group.shef.ac.uk/index.htm.

‘Fishing’ for new animal models of MND

Two others at our ‘ice-breaker’ gave lectures during the Saturday session on ‘Emerging Disease Models’.   Marc Da Costa (also from Sheffield) described some outcomes of his PhD project developing a new zebrafish with a mutated SOD1 gene.  Zebrafish are popular models for neurological conditions (there was a second presentation from an US-based group), as the fish embryos are transparent, so their neurones can be studied easily under the microscope.  Their muscular strength can be judged by the amount they move (studied by automated analysis of video) or by their progress swimming against a ‘current’ in a tube.  Marc studies the differences between fish with normal or mutant SOD1.  The latter have more difficulty swimming, and are more vulnerable to stress (for example, added toxic chemicals).  Marc can test the effects of potential drugs on the stressed fish, and has already seen some promising results.

Looking in a ‘library’ for MND mice

Another new animal model was presented by Peter Joyce (MND Association funded, based at the Medical Research Council Laboratories near Oxford).  His mouse strain carries a mutation (mistake) in its native (mouse) SOD1 gene, matching one recently reported from a human family with ALS.  This is different from the more established SOD1 mouse model, in which the MND-like symptoms develop as a result of multiple copies of an added human mutant gene.  Peter is studying the timescale in which muscle problems develop, relating these to changes in the neurones.  The MRC has a huge ‘library’ of mouse mutations available, so Peter will be investigating if others match mutations reported in different ALS families, possibly looking for collaborators to work on these.

Presenting the impact of healthcare decisions

A completely different type of research was presented as posters by two researchers working with Carolyn Young at the University of Liverpool.  Hikari Ando has been studying the reasons why some people with MND decide not to accept the offer of non-invasive ventilation (NIV), and the extent to it is actually used by at home.  Chris Gibbons’ work covered the assessment of quality of life for people with MND, particularly the role of fatigue and depression. 

Final thoughts

It was particularly inspiring to meet so many UK-based researchers, filling all of us from the MND Association with more incurable optimism.  Of course we also met many other people too – the attendees, many of whom collaborate internationally, came from more than 30 countries.

Updating healthcare professionals on MND research

On Tuesday this week I drove up to Burton-on-Trent to give a talk at a study event for healthcare professionals who are involved in supporting people living with MND. The event was organised by one of my colleagues Jackie Dornford-May, the regional care development adviser for the area. There were two speakers at the event, myself and the Nottingham care centre co-ordinator Carol Gent – I had agreed to give an update on MND research.

I checked the route before I left the office, however, clearly not quite carefully enough, as I took the ‘scenic route’ through Burton by mistake, going past the Marmite factory as result (I wonder if they make all the spin-off products there too?) Despite my route, I arrived in good time and was lucky enough to hear the end of Carol’s talk on supporting carers of people with MND.

There were maybe 15 or 20 people in the room, after Carol’s talk there was a refreshment break to allow people to do some all-important networking. Then I was on! I gave people an overview of what motor neurones are and how long and physically fragile they are, before moving on to the nitty-gritty of the latest news in research. I had tailored my talk to the audience, so I talked more about our healthcare research programme  than I normally would. We are funding four of these projects – ultimately their aim is to improve the quality of life and standards of care for people living with MND. The projects range from understanding how newly emerging technologies and interventions such as NIV and cough assist machines may help people with MND manage the symptoms of the disease to developing more accurate ways of measuring quality of life.

I concluded my presentation by talking about unproven treatments. What are unproven treatments? Well, literally anything where the safety or beneficial effects have not been demonstrated clearly, in an objective and scientifically rigorous way. Our team is often contacted by people who have read something on the internet and would like to get our thoughts on whether the claims are true. We recognise that making decisions on whether to buy or receive these treatments is tricky.

If you have any queries on unproven treatments or any queries on research, you can put a voice to the words (as opposed to a face to name!) and phone us, our number is 01604 611 880 or our email address is research@mndassociation.org.

These educational events keep healthcare professionals up to date with a range of aspects around living with MND. I hope that my update on the latest news in research gives them, and people with MND that they may be in touch with, hope for the future.