Season of mists and mellow fruitfulness…..and prizes….

The fantastic news that Patrick Joyce and his co-inventors have won the 2015 Hackaday Prize for their ‘Eyedrivomatic’ invention is one of a number of research prizes announced this autumn.

Martin Turner award

Prof Martin Turner receiving his award from Prof Jane Dacre, RCP President

At the beginning of November Prof Martin Turner was presented with the Graham Bull Prize for Clinical Science by the Royal College of Physicians (RCP). The Prize is awarded to a member of the RCP under the age of 45 who has made a major contribution to clinical science.

The winner of the Graham Bull Prize is also invited to deliver the prestigious Goulstonian Lecture, an annual lecture given by a young RCP member that dates back to 1635 and the list of previous speakers reads as a ‘Who’s Who’ of the history of British Medicine!

Those of you who know Martin, in particular the many participants who volunteer for his BioMOx research programme will be pleased to see his new title: he was awarded the title of Professor by the University of Oxford in July this year. Aren’t Professors getting younger looking these days…!

Looking north, the pioneering work of Prof Richard Ribchester at the University of Edinburgh has been recognised through winning the Delsys Prize for Innovation in Electromyography. Funded by the MND Association, Prof Richester, Dr Rosalind Brown and colleagues have been developing a novel approach to examine changes to the connections between motor neurons and muscles as the disease progresses.


Prof Richard Ribchester


Prof Ribchester’s work was selected from a field of 75 entries from 26 countries, spanning diverse areas such as biomechanics, robotics, kinesiology, speech pathology and imaging, across the fields of biomedicine and bioengineering.



Further north still, Association-funded investigator Dr Gareth Miles of the University of St Andrews, was recently announced as the recipient of the 2015 Instituto Paulo Gontijo (IPG) Award for Medicine. This annual prize is given to a young investigator who has made an outstanding contribution to the understanding of amyotrophic lateral sclerosis and other motor neuron diseases and in a small number of years has become one of the most prestigious awards in the MND research world.

Dr Miles was judged the winner from a very strong field for his work on characterising changes in human motor neurons created from skin cells of people with MND using induced pluripotent stem cell technology. Dr Miles and his team have identified subtle changes in the electrical properties of these motor neurons that appear to be associated with the disease and which may provide new approaches to treatment in the future. Dr Miles will be presented with his award in the Opening Session at the 26th International Symposium on ALS/MND on 11th December.

Gareth Miles and team

Dr Gareth Miles (centre right) and team

Of course, the ultimate prize – a cure for MND – still eludes us, but these awards do reflect the increasing prominence of MND research across the scientific world as well as the quality of both the research and the researchers whose work we fund.

Heading in the right direction: Sheffield Support Snood update

We are funding, together with the NIHR i4i (National Institute for Heath Research invention for innovation) programme, a research team in Sheffield who have developed a new type of neck support for people living with neck muscle weakness as a result of a neurological condition.

Designers, clinicians and engineers from University of Sheffield, Sheffield Hallam University, Devices for Dignity, Sheffield Teaching Hospital, Barnsley Hospital, and the Sheffield MND Research Advisory Group have worked together with people living with MND to develop the Sheffield Support Snood through an iterative design process.

The results from a small pilot study of the snood were presented at the International Symposium on ALS/MND in Brussels last year, where we reported on it.

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Next step – the 100 collars project

In September we attended the Sheffield Support Snood training day, run by Devices for Dignity, Sheffield Teaching Hospitals NHS Foundation Trust, and Dr. Christopher McDermott, a Clinician Scientist at the Sheffield Institute for Translational Neuroscience (SITraN) who is the Chief Investigator for the project .

The training day allowed physiotherapists and occupational therapists from MND care centres to see the collar, receive training on how to put it on, and find out about the 100 collars project.

100 people with MND who experience neck weakness and 50 people who have neck weakness linked to another condition, such as muscular dystrophy or after having a stroke, will test out the latest design of the snood.

How can you take part?

MND Care centres at the following hospitals/locations are participating in the 100 collars project:

  • Sheffield
  • Oxford Radcliffe
  • Walton Centre, Liverpool
  • King’s College, London
  • Newcastle Upon Tyne
  • Addenbrookes, Cambridge
  • Preston
  • Salford Royal Hospital
  • Queen Elizabeth University Hospital, Glasgow
  • NHS Lothian, Edinburgh
  • Beaumont Hospital, Dublin

People who attend one of these centres will be able to speak to someone about this project at their next appointment. Snoods are expected to be available to those taking part from late November.

Those who do not currently attend a participating centre, but are interested in taking part need to speak to their neurologist about a possible referral to one of these centres.

What does taking part in the project involve?

People taking part will be asked to commit to two visits to their participating centre, one month apart, to complete two questionnaires and have the snood fitted.

Those taking part will initially fill out a questionnaire asking about any collar(s) they currently use and their level of neck weakness.

After one month of using the Sheffield Support Snood, participants will be asked to fill out another questionnaire giving information on how they found the snood, assess the quality of support it gave and how comfortable it was. They can continue using the snood after this trial month if they find it suitable.

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

Dr Christopher McDermott commented, “We are excited about getting feedback and reaction to the snood from people who were not involved in the design of it or the initial small study. The comments from people who take part in the 100 collars project will be important in helping with the ongoing process of refining the design of the support snood.”

Why not collars for everyone?

The 100 collars project is needed in order to provide potential manufacturers with evidence on if the support snood is a good product and a feasible alternative to collars that are currently available.

It is unlikely a company would take on the license for the product and go on to manufacture it, without it having first been tested in many people.

In the future it is hoped that once a manufacturer is found to take on the snood, it could then be available more widely to anyone with neck weakness, including people who have MND.

Palliative Care Research – new funding available

Today an exciting announcement was made about three organisations working together to increase our knowledge on the best way to provide palliative and end of life care. The MND Association and the Chief Scientists Office in Scotland (CSO) will be working with Marie Curie on a new research call.

Marie Curie Logo

In addition to a £1million funding pot from Marie Curie, the CSO will contribute £225,000 of funding and MND Association will contribute up to £200,000. Scientists, clinicians or healthcare workers are invited to submit their outline applications by 14 January 2016.

Acting on what you told us

The areas that we’d like to fund are based on a project that was completed in January 2015, known as the ‘Palliative and End of Life Care Priority Setting Partnership’, shortened to ‘PeolcPSP’. At the core of this 18 month project were responses to an online survey, where many people shared their questions or experiences about the end of life. We were pleased that many people affected by MND took part.

From those survey responses, we worked out that there were a massive 83 topics that would be suitable for a research study (and where no conclusive studies had already been conducted). All of these are important topics to investigate, so we’re hoping that researchers with an interest in working in any of these topics will think about submitting an application for funding.Palliative-care-2

So what kind of topics are included?

The topics for the call are the list of 83 questions from this earlier palliative care research study (the PeolcPSP study mentioned above). It is too long a list to include in this post, but the overarching themes include how (best to):

  • communicate topics on palliative and end of life care
  • manage symptoms and medications
  • provide support for carers and families
  • provide support in bereavement
  • provide support for staff (and staff training)
  • co-ordinate care services
  • provide access to services
  • decide where the care should be and what type of care

Where can I find out more?

A press release and more information on how to apply for this funding is available on the Marie Curie website.

The Palliative and end of life care Priority Setting Partnership final report is available online. There’s also a video about the project explaining how it happened and why it is important.

How MND research happens: Manchester Science Festival

On Tuesday, we posted news of the two MND Awareness engagement events taking place in Manchester during the Manchester Science Festival (on 25 and 31 October). Both activities have been developed to try and translate to a wide audience the cycle scientific investigation goes through. Here in a second guest blog for us Dr Emma Hodson-Tole explains more.

The search for providing effective treatments and provision of support for MND is a challenge a wide network of scientists from many different disciplines are working to solve.  This requires development of new technologies and new approaches to enable study of different aspects of the neuromuscular system. These help provide a new understanding of how the neuromuscular system works, and changes which occur due to diseases such as MND.

To do this funding is required to provide laboratory space, cover costs of equipment and materials and enable researchers to have time to focus on their chosen programme of work.  Funding can come from many sources, for example from government research agencies such as the Medical Research Council (MRC) or medical research charities. For the MND Association the money spent on research is raised by donations. The donations come from members of the general public and the amazing range of fundraising activities they take part in.

It takes dedication for MND research to happen

So what are the motivations for all these activities?  Both the research and the fundraising activities require large amounts of dedication, determination and drive.  The source of this motivation is likely very different for each person in this network.  From the people I have had a chance to meet as part of my work related to MND, it seems that there is often a common theme.  That theme is the stories of the people who have been touched by MND, either through being diagnosed themselves or through supporting a family member or friend with the disease.  It is these individual stories which bring us full circle, to the challenges which scientists must work towards solving.

Inspiring the next generation of scientists

We hope the engagement activities planned for the science festival will help raise awareness of MND and ongoing research based in Manchester and other parts of the UK, such as the Patani Lab.  Spreading awareness within this setting could, we hope, also help inspire the next generation of scientists who are motivated to try and meet the challenges MND currently faces us with.

If you are in the Manchester area please do come by and see us, equally don’t forget to encourage any family or friends in the region to come and find out what it is all about!

You can find out more about the events described here and those of the wider Manchester Science Festival at:

Movement Making: 10.30am – 5pm Sunday 25 October, The Museum of Science & Industry, Manchester, M3 4FP

Action Potential: 11:45am, 2pm and 3pm Saturday 31 October, The John Dalton Building, Manchester Metropolitan University, M1 5GD (Being held as part of MMU Science Extravaganza)

Dr. Emma Hodson-Tole is a member of the Cognitive Motor Function research group at Manchester Metropolitan University. The activities described have been developed in collaboration with Dr. Rickie Patani (UCL), Belinda Cupid (MND Association), Devin Louttit and Thomas Valentine (Manchester Metropolitan University), Combination Dance, Dance Consulting and have been supported by The Wellcome Trust, the MND Association and MMUEngage.

Those of you on Twitter can follow activities related to the Manchester Science Festival using #msf15 and those specific to our activities using #mndmove

Movement Making in Manchester

Manchester this half term will be the showcase for two MND awareness events we’ve been working on with Dr Emma Hodson-Tole and Dr Rickie Patani. We’ll be publishing a series of blogs about what’s happening and why through this week. In the first Dr Emma Hodson-Tole explains what the events are about.

It is coming up to that time of year again when science takes centre stage in Manchester. The ninth Manchester Science Festival has over 130 planned events, providing a unique blend of art, make-it workshops, performances and big experiences aimed at encouraging visitors of all ages to immerse themselves in science, ideas and innovation.

As part of this year’s festival we have developed two activities which we hope will raise awareness of motor neurone disease (MND), the MND Association and some of the research which is supported by the fundraising activities of the charity.  The first event is an opportunity to visit the first showing of a video montage, composed by Devin Louttit and Thomas Valentine (MMU), telling some of the stories of those affected by MND and some of the researchers working to development new treatments or methods.

Movement Making at MOSI

The event, Movement Making, will take place at The Museum of Science and Industry (MOSI) on Sunday 25 October and will also provide opportunities to talk directly with researchers from Manchester Metropolitan University (MMU) and The Patani Lab as well as see and interact with some of the technology they use as part of their research.  This will include the chance to see cells through a microscope, view your own muscles using ultrasound imaging and hear the electrical activity which occurs in muscle when they are activated.

Emma Hodson-Tole discussing her research with guests from the Motor Neurone Disease Association.

Emma Hodson-Tole (left) discussing her research and using the ultrasound imaging machine with guests from the MND Association.

Action Potential at MMU’s ‘Science Extravaganza’

The second event is the premier of an exciting new dance-science collaboration called ‘Action Potential’.  Dancers and martial arts performers will stage an interactive dance exploring how we currently understand a motor neurone works, how MND affects the body and the effects MND has on those living with the disease.  The dance is choreographed by Anne-Marie Smalldon and is the result of a new collaboration between researchers and professional dancers.  In between performances there will also be another opportunity to see the video montage ‘Movement Making’, talk to scientists about their work and volunteers from the MND Association about their experiences of MND.ACTION POTENTIAL_FINAL

This event will take place on Saturday 31 October at Manchester Metropolitan University and is part of a range of wider science based activities being staged as part of the University’s ‘Science Extravaganza’ day.

Movement Making: 10.30am – 5pm Sunday 25 October, The Museum of Science & Industry, Manchester, M3 4FP

Action Potential: 11:45am, 2pm and 3pm Saturday 31 October, The John Dalton Building, Manchester Metropolitan University, M1 5GD (Being held as part of MMU Science Extravaganza)ScienceExtravaganzaPoster

Dr. Emma Hodson-Tole is a member of the Cognitive Motor Function research group at Manchester Metropolitan University. The activities described have been developed in collaboration with Dr. Rickie Patani (UCL), Belinda Cupid (MND Association), Devin Louttit and Thomas Valentine (Manchester Metropolitan University), Combination Dance, Dance Consulting and have been supported by The Wellcome Trust, the MND Association and MMUEngage.

Those of you on Twitter can follow activities related to the Manchester Science Festival using #msf15 and those specific to our activities using #mndmove

Raising the profile of Kennedy’s disease

Did you know the MND Association also supports people who have Kennedy’s disease?

In May a new clinic specialising in Kennedy’s disease opened in London at the National Hospital for Neurology and Neurosurgery.

To mark this big step in helping support and treat people with Kennedy’s disease, Katy Styles who campaigns on behalf of the Association, and whose husband Mark has Kennedy’s disease, thought it would be a great opportunity to raise awareness of this rare condition.

Katy and Mark Styles
Katy and Mark Styles

There is very low awareness of this disease amongst neurologists, healthcare professionals, the general public and within the Association itself. We do all we can to explain to everybody what Kennedy’s disease is and what it’s like to live with.

Due to the rarity of Kennedy’s disease you can feel very much alone. It is so great to be part of the MND family and the Association is key to this by making us feel part of a wider community.”

What is Kennedy’s disease?

Kennedy’s disease is a condition similar to motor neurone disease (MND) which affects motor neurones. It is sometimes called spinal and bulbar muscular atrophy (SBMA). Continue reading

Withdrawing ventilation support at the request of the patient: the ethical, moral and legal issues

Motor neurone disease (MND) can cause weakness in the chest muscles involved in breathing. This leads to shortness of breath and symptoms including disturbed sleep and headaches. Ventilation support allows a person to breathe more efficiently and can also extend survival.

The MND Association has funded research into respiratory management and ventilation support for people living with MND.

A study looking at withdrawing ventilation support at the request of a patient with MND has recently been published in the journal BMJ Supportive and Palliative Care. It was led by Professor Christina Faull, from LOROS – the Leicestershire and Rutland Hospice – in conjunction with the University Hospital of Leicester, and has been part-funded by the Association. Continue reading

Disappointing news for diaphragm pacing in MND

Results from the UK clinical trial of diaphragm pacing in MND/ALS (known as DiPALS) were published online today in the journal Lancet Neurology.

DiPALS was the first randomised clinical trial of diaphragm pacing in MND and aimed to find out whether or not diaphragm pacing was beneficial when added to the current standard treatment of non-invasive ventilation (NIV), compared to NIV treatment alone.

The trial results unfortunately show that diaphragm pacing was not beneficial when used in addition to NIV, and was in fact harmful, with people using diaphragm pacing living on average 11 months shorter than those on NIV alone.

Continue reading

Formaldehyde exposure and increased risk of developing MND

A new study published yesterday in the Journal of Neurology, Neurosurgery and Psychiatry (JNNP) highlights the link between increased exposure to formaldehyde and an increased risk of developing MND.

The study in the USA was conducted by Andrea Roberts and colleagues at the Department of Social and Behavioural Sciences at Harvard. They investigated whether a person’s exposure to formaldehyde in their occupation increased their risk of developing motor neurone disease (MND).20141020_MND Kings College_290

Formaldehyde is a colourless chemical that is used as a preservative in mortuaries, medical laboratories and by undertakers. Exposure occurs primarily by inhaling formaldehyde gas or vapour from the air or by absorbing liquids containing formaldehyde through the skin.

The study found that those with a ‘high intensity’ and probability of exposure to formaldehyde had nearly four times higher risk of developing MND compared to people who had no exposure to formaldehyde. All participants that fitted these criteria were funeral directors. The increased risk of developing MND in this occupation group was only found in men, with no link found for women.

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A clinical trial of Jedi proportions…

The MND Association is backing a new clinical trial in MND, known as MIROCALS. This will be a joint clinical trial between France and the UK that will aim to dampen the overactive immune system by increasing the amount of interleukin-2.

It is important to stress that planning for this MND clinical trial has only just started and the next step is to lay the essential groundwork and perform some short-term pilot studies. The main trial is likely to begin recruiting participants in autumn 2016.

Continue reading