Latest News

October 2018

HighCALS – nutritional management survey for healthcare professionals

The HighCALS study is conducting a survey for healthcare workers who are involved in the care of people with MND, to find out about how their nutritional needs are currently met.

The survey is open to any healthcare professionals who feel able to comment on this topic, including doctors, nurses, dietitians, speech and language therapists, occupational therapists, physiotherapists and care coordinators. It is accessible via the following link: and may take about 20 to 25 minutes to complete.

COMMEND – study open to recruitment


The purpose of this study is to develop a new form of psychological therapy called Acceptance and Commitment Therapy for improving emotional wellbeing in people with MND. We would like to see how acceptable this newly developed therapy is to people with MND, and whether it is possible to provide it in the NHS.

What is Acceptance and Commitment Therapy? 

Acceptance and Commitment Therapy is a new form of psychological therapy that helps people to learn how to live with difficult or distressing thoughts, feelings or bodily sensations, while still doing things that really matter to them or being the type of person they want to be with MND.

Full information is available on the study page, here.

September 2018

MND Diagnosis study

A questionnaire study open to patients and family/caregivers

A research team including Prof Mary O’Brien from Edge Hill University, Prof David Oliver from the University of Kent and Prof Chris McDermott from the University of Sheffield are inviting people with MND to take part in a study looking at the way the diagnosis is told to people, the information they are given and if the process is in line with the Guidance produced by the National Institute for Health and Care Excellence (NICE). They are also looking for family members/caregivers of people diagnosed with MND to understand more about how the process is seen by them. It is hoped that the results will be published in scientific papers to enable neurologists, and others involved in health and social care, to be aware of the issues that are raised so that there can be improvements to care.  The study has been reviewed and given ethical approval from Edge Hill University Faculty of Health & Social Care Research Ethics Committee.

What would I have to do?

You will be asked to complete a questionnaire asking about your (or your family member’s) experience of being told the diagnosis of MND. The questionnaire is web-based and can be accessed via the links below. If you would prefer a paper copy of the questionnaire, or for any other queries, please contact Prof Mary O’Brien,  (01695 650918).

Survey for people with MND:

Survey for family members/carers:

May 2018

HighCALS workshops

HighCALS is a research programme aiming to help people with MND achieve a high-calorie diet.  They are currently looking for MND healthcare professionals & those involved in commissioning / delivering services to take part in workshops across the UK during June 2018, to find out about how such needs are currently met in the NHS. Please see the flyer for full details: HighCALS workshops June 2018

February 2018

New research study, ProSec3, recruits first patients

ProSec3, evaluating the clinical management of excessive saliva in patients with motor neurone disease, has opened to recruitment.  Sheffield has recruited its first patients into the study, and other sites up-and-down the country (20 in total!) are primed to start recruitment very soon.  The study is jointly funded by Marie Curie and the Motor Neurone Disease Association.  Click here for more information about the study.

December 2017

Mary O’Brien

Brief description of yourself and career journey to date?

I’m Mary O’Brien, Professor of Palliative and Supportive care at Edge Hill University in the lovely market town of Ormskirk in Lancashire, about 14 miles from the centre of Liverpool. I trained as a nurse and worked in different specialties. After a while working in neurosciences I became a nurse specialist for MND and continued in the role for nearly 10 years before moving into academia. This has given me the opportunity to develop my own research and to collaborate with other researchers. I also hope to inspire new generations of researchers as I teach health professionals about research methods and supervise Masters level and PhD students.


How and why did you get into MND research?

I first got into MND research when I was working as a nurse specialist for MND. The consultant I worked with was very research active and involved in a number of different studies so I started working on some too, the first one was the original Riluzole study. I suppose having such close involvement with people affected by MND and witnessing their struggles made me realise how important research was in our efforts to try and make their lives better.


Can you briefly describe the research you are currently involved in?

I am interested in the needs of people with MND and their family carers particularly towards the end of life and into bereavement. Recently I’ve been working with the MND Association to pilot the Carers’ Alert Thermometer (CAT), a triage tool developed with colleagues at Edge Hill University. The CAT helps to identify those carers who may be struggling and in need of additional support and its use is being rolled out across the MND Association.


What do you enjoy most about your job as a researcher?

Giving people the opportunity to have their voices heard. Being a qualitative researcher is all about listening to people’s stories, taking account of their opinions, trying to understand their experiences and helping to make sense of what is happening to them.


What’s been the highlight of your career so far?

Being awarded a personal chair in August 2015 is certainly a highlight for me. I never imagined when I started my nurse training that I would eventually end up as a Professor.


Who do you admire the most?

There are so many people, it would be hard to pick just one. I do really admire those people who take part in research studies. They give up their time and put themselves out when they may not actually benefit themselves from taking part, but other people may in the future. It is such an altruistic act.


What do you like doing in your spare time?

There never really seems to be enough spare time but I do enjoy a few activities. I try to keep fit and began running marathons about ten years ago. I’m a keen gardener and like growing fruit and veg as well as flowers. I really enjoy baking, and in particular I like making celebration cakes, so it’s just as well I have some chickens to supply me with eggs! Perhaps my most enjoyable activity recently has been spending time with my first grandchild Amelie.

July 2017

Dr. Muhammad Rafiq

Brief description of yourself and career journey to date?

I am a consultant neurologist with special interest in MND.  I was trained in neurology and did my research in MND at the Sheffield Teaching Hospitals and University of Sheffield under the auspices of Prof. Dame Pamela Shaw.

How and why did you get into MND research?

I got into MND research purely by chance but I soon realized the potential of making a difference in the lives of people with MND.  I continued in this field as I felt that I was able to look after the needs of people with MND and over the years I became very good at diagnosing and managing this condition.

Can you briefly describe the research you are currently involved in?

I am focusing on the symptomatic management of MND in particular the respiratory issues.  I am also working on a project to reduce immobility related issues such as ankle swelling.

What do you enjoy most about your job as a researcher?

I am always energized by the courage with which people with MND face their condition and most of them think positively and take part in research with enthusiasm.  Meeting such patients and helping them is really satisfying.

What’s been the highlight of your career so far?

I have been successful in securing a consultant post where I have the opportunity to lead on the MND services for a very large geographical area and do research on MND.  I have started to personally make a difference in people’s journey.

Who do you admire the most?

As mentioned above I admire the courage and humor of people with MND.

What do you like doing in your spare time?

I think that the art of medicine is too vast and life is short. Although I do spend time with my family, I try to read and write in my spare time and that’s when I feel my time is best spent.

Dr John Ealing

Brief description of yourself and career journey to date?

I grew up in a former mining town in the midlands. Although not from a medical family, I knew from my early teens that I wanted to be a medic. After training in London, Oxford and Preston, I settled in Manchester with my wife and two children. I’ve been a Consultant Neurologist and Director of the MND Care Center in Manchester since 2005.

How and why did you get into MND research?

Anyone working with people living with MND understands the desire to strive toward more effective treatments and perhaps equally important, better symptom control. Although as a full time NHS Consultant, my research is now more patient-based for much of my training I “moonlighted” in laboratories in London and Oxford. As one of the researchers in white coats and goggles staring at test tubes that you see on the TV and I can assure you that the reality is far from the miraculous labs of “House” and “Silent Witness” as advances in diseases such as MND takes years of often laborious work by scientists. Only a small proportion of the work hits the headlines but the incremental gain of knowledge has been hugely helpful.

Can you briefly describe the research you are currently involved in?

Gone are my days of laboratory research; the demands of the NHS don’t sit well with the complexity of lab work. However, I maintain a keen interest in the developments and especially when they have an effect on people living with MND.

The team in Manchester recruited to the LiCALs, DiPALs, SCALES, Heads Up and the MNDA DNA bank as well as identifying patients that led to the discovery of the C9orf72 gene. We’re currently recruiting for TONIC and 100,000 Genomes study, will be recruiting to a study looking to support those caring for people living with MND and remain primed for the next treatment trial.

What do you enjoy most about your job as a researcher?

There are so many things in life we don’t understand as yet. Any progress toward a greater understanding as to what makes us tick is hugely important.

What’s been the highlight of your career so far?

I once managed to sub-clone a gene from the human pubic louse; I wasn’t planning to do so and to this day I have no idea how it happened. I guess any hope for a Nobel Prize for that is out of the question?

Designing and making a muscle protein that fluoresced and allowed researchers to watch it in real time as this protein was made and transported to the surface of muscle cells was pretty good although less colleagues laughed than with the pubic louse result.

Who do you admire the most?

People like Nelson Mandela and Ghandi get all the well-deserved kudos, but anyone who shows tenacity and perseverance against the odds gets my vote. That pretty much sums up people living with MND.

What do you like doing in your spare time?

I run up mountains, take photos and then run back down again. During that process I take care not to fall or get lost as doing either would require me to call out the local mountain rescue team; imagine the embarrassment of having to be rescued by your own team!

There are also some people in my house that identify themselves as my wife and two children. I suppose I chat to them occasionally.

Professor Chris McDermot

Chris McDermott is Professor of Translational Neurology at the University of Sheffield, UK, where he is co-director of the Motor Neuron Disease Care and Research Centre. He leads a research group whose goal is to develop the evidence base for symptom management in patients motor neuron disease.

What has been the greatest achievement of your career?

The opportunity to work in partnership with people living with motor neuron disease, so as to develop solutions to the problems they face on a daily basis.

What do you think is the most neglected field of science or medicine at the moment?

Palliative care, particularly in the last few months of life.

What inspires you?

The refusal to accept that just because something cannot be cured, there is nothing to be done.

If you had not entered your current profession, what would you have liked to do?

Be a pop star, starship captain, or historian.

How do you relax?

By laughing, eating, and travelling with friends and family.

What is your greatest regret?

Neither learning to play the piano nor learning to speak a foreign language when I was younger.

What is your favorite film and why?

Pride is my current favorite. It made me laugh, cry, and indulge in childhood nostalgia.

How would you improve the public’s understanding of research?

With a scripted reality show.

What was your first experiment as a child?

Does sandwich spread taste the same as mayonnaise?
Conclusion: no.

If you were Bill Gates, how would you spend your fortune?

I would set up a foundation to fund the world’s best researchers and incentivise industry to facilitate advances in treating people with motor neuron disease.

June 2017

New Patient and Public Involvement Members

We would like to welcome our 2 new PPI representatives to the group, Lisa Milella and Nicola Drewry. Having members of the group who can provide us with their personal experiences and opinions during our discussions of MND research is vital to ensure that the research is feasible and holds the patients at its core. Please see the members page for more information about these individuals.

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