An insight into TDP-43 – An ENCALS 2015 meeting report

Dr Jakub Scaber, University of Oxford, UK

Dr Jakub Scaber, University of Oxford, UK

Medical Research Council (MRC)/ MND Association Lady Edith Wolfson Clinical Fellow, Dr Jakub Scaber, attended the European Network for a Cure of ALS (ENCALS) meeting from 21-23 May 2015.

Reporting back from the event in Dublin, Dr Scaber summarised the TDP-43 session, including his presentation on recent developments in his own Association-funded research:

The fifth session of the ENCALS meeting focussed on a protein called TDP-43: This is the protein that accumulates in the brains of people living with MND and has been tightly linked to the development of the disease. Abnormal forms of this protein can be found in 98% of cases and this session had some very interesting basic science discoveries around this topic. Continue reading

Oxidation Resistance 1 – tackling oxidative stress

MND Association-funded researchers, Prof Dame Kay Davies and Dr Peter Oliver, both based at the University of Oxford, have identified the oxidation resistance 1 (OXR1) gene as a neuroprotective factor in MND.

Published in the journal Brain on 9 March 2015, Prof Davies has shown through their recent research in mice that OXR1 may serve a new target for future drug development.

We’re funding Matthew Williamson’s PhD studentship to follow up this exciting research. Find out more about this and the other research projects funded by the Association in our newly updated Research we fund information sheet. Continue reading

ProGas study results on gastrostomy in MND published

Under the leadership of Dr Christopher McDermott, based at the Sheffield Institute for Translational Neuroscience (SITraN), research published today on 29 May 2015 in the Lancet Neurology highlights that better weight management in MND is key to survival.

Following on from initial results presented at the 25th International Symposium on ALS/MND in December 2014, the Prospective Gastrostomy (ProGas) study in MND aimed to investigate the optimal timing for gastrostomy in MND due to the lack of evidence available.

Dr Chris McDermott (Sheffield Institute for Translational Neuroscience, University of Sheffield)

Dr Chris McDermott (Sheffield Institute for Translational Neuroscience, University of Sheffield)

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Nurturing the future of MND research – new opportunity for researchers

We are pleased to announce that as well as applications for our next round for PhD Studentship applications, we are also accepting applications for our brand new Non-Clinical Fellowship scheme. These fellowships are aimed at early career researchers across a range of disciplines, allowing them to take the reins of their very own research project. University of NottinghamMNDA ResearchPicture by Vicky Matthers iconphotomedia Continue reading

Breaking the Human Genome Code

Dr Johnathan Cooper-KnockProfessor Winston Hide gave his inaugural lecture on 17 March, during Brain Awareness week, entitled ‘breaking the human genome code – opening Pandora’s box’, which you can watch in full at the end of this blog post.

Professor Hide recently joined the University of Sheffield, and MND Association/ Medical Research Council (MRC) Lady Edith Wolfson Clinical Research Fellow, Dr Johnathan Cooper-Knock has written a blog below about Professor Hide’s research and how they are working together towards a world free from MND: Continue reading

Buckets more research – some of our plans for the Ice Bucket Challenge money

Today’s announcement of the difference the ALS / MND ice bucket challenge has made included a number of areas of research investment. You’ll be hearing much more about these as our plans develop, but here are three examples to give you a flavour of things to come.

ibc oxford

Oxford researchers get an icing!

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Making antisense of RNA editing

helena chaytow 2Association-funded PhD student, Helena Chaytow (Royal Holloway, University of London), is using DNA to develop a targeted treatment for MND. Now entering her final year, we report on what she’s achieved so far and her future plans.

The background

Helena’s research is looking at the chemical messenger ‘glutamate’. Glutamate is released by motor neurones in order to stimulate a nerve impulse from one motor neurone to the other, which is how the instruction to move our muscles travels from our brain to our limbs.

In order to pass the message on, glutamate needs to bind to the second nerve cell, and it does this by acting like a ‘lock and key’. Continue reading

New fellowship awarded to further our understanding of RNA in MND

Dr Pietro Fratta (University College London) received his initial Training Fellowship through the MND Association/ Medical Research Council (MRC) Lady Edith Wolfson Programme in 2010. Starting on 1 February 2015, Dr Fratta was awarded a Clinician Scientist Fellowship to continue his research into MND.


Totalling £1.16 million, of which the Association has committed to contribute £280,000, this new fellowship will allow Dr Fratta to find out what RNA molecules are present in both the cell body of the motor neuron, and the nerve fibres. Continue reading

Pretty ‘fly’ for a fruit fly

A fruit fly

Dr Frank Hirth is one of the world’s leading fruit fly MND researchers. Based at the Institute of Psychiatry, Psychology and Neuroscience at King’s College London, he has been working on an Association-funded project developing a C9orf72 fruit fly model of MND. Here we mark the end of this project, and report on what the researchers have achieved.


In September 2011, an international collaboration, co-funded by the Association, had discovered a genetic mistake within the C9orf72 gene that was found to cause almost 40% of cases of inherited MND. Continue reading

Research priorities in palliative and end of life care

Palliative-care-2In a fitting start to a new year, the results of the Palliative and End of Life Care Priority Setting Partnership top 10 priorities for research were released today. The topics range from: the best way to get out of hours palliative care, how to provide palliative care for everyone irrespective of where they live in the UK, to the best way to manage pain and discomfort for people with communication or cognitive difficulties.

For the MND Association the results will help focus future healthcare research and help support our campaigning for more funds for palliative and end of life care. Announcing the top 10 priorities for research is the start of a long process. I hope that it gives people with MND today a sense that their battles are being recognised, they’re not alone and that we’re all working together to ensure that better care is available. Continue reading