Global MND Awareness Day- Celebrating Collaboration

Global MND Awareness Day- Celebrating Collaboration

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Each year, the 21st of June marks Global MND Awareness Day and MND Charites and Associations across the world acknowledge the impact that MND has on everyone who is affected by the disease. This year, we would like to recognise the dedication and commitment of the MND community who give their time and knowledge to contribute to the collaborative effort to find new treatments.

Over the last three years, people with MND, researchers, neurologists and MND charities have come together to campaign for more Government investment into research that specifically focuses on MND. In November 2021, the Government agreed to invest £50 million into targeted MND research over five years.

While we are still waiting on this Government investment, the United to End MND campaign has inspired the development of a new initiative, which aims to address some of the current problems with getting potential therapies from the laboratory into the clinic (also known as translational research). This collective partnership, between charities (MND Association, LifeArc, MND Scotland, and My Name’5 Doddie Foundation) and government funders (Medical Research Council and National Institute of Health Research), will accelerate the development of treatments for MND. The organisations involved in the partnership have each committed funds to a total of £4.25 million which will support one collaborative project and act as a springboard for future large-scale projects in MND research. The project will help to bring the research community together to discover new ways in which treatments can be found and tested, as well as encourage more research centres to get involved in the fight against MND. The recipients of this funding were announced today.

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This 3-year project, led by Professor Ammar Al-Chalabi from King’s College London (right) and Professor Chris McDermott from the University of Sheffield (left), aims to resolve two problems which are currently slowing progress in developing effective treatments for MND.

Problem 1

The first problem that is slowing the development of treatments is that MND affects everyone differently. This means that currently it is hard to measure disease progression and whether a potential treatment is truly effective.

The project aims to overcome this problem by improving ways that we can measure disease progression and treatment response in the laboratory. Part of this involves taking samples from 1000 people with MND, both at clinic visits and at home, and using these to identify and develop biomarkers of MND that could provide a more reliable measure of disease progression and activity.

It will also build on current research infrastructure, such as the MND register and an existing telehealth platform called Telehealth in MND or TiM. TiM is an app which is used to help improve communication between people with MND, their carers and healthcare professionals in the clinics. It uses questionnaires to gather information on areas such as weight, appetite and functional abilities to help care teams make sure that people are getting the care they need. The app is to be developed further to incorporate some research features so that people with MND can take part in research from their homes. The development of the TiM app and linking to the MND Register will be useful in collecting further data on symptoms, location, life-style factors, disease progression and quality of life. This data will be used to improve the accuracy of the ALSFRS-R, which is a widely used questionnaire to assess progression, and make it more useful in future clinical research.

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Problem 2

The second issue is that we cannot take biopsies (tissue samples) from those with MND like we can in other diseases, and this makes testing new treatments on diseased cells very difficult.

This problem area will be addressed by using cells from people with MND to enable better testing of new treatments. Using blood cells from those with MND, the researchers will create stem cells which are specially designed to behave in the same way as cells in someone with the disease. These stem cells can then be used to generate motor neurons and other types of brain cells that are important in maintaining the health of motor neurons. This part of the project will bring research centres in the UK together to form a network, which will allow a larger number of potential treatments to be tested in several types of cells. As each centre will be using the same cells in the same way, it means that promising therapies discovered in one centre can be rapidly shared and confirmed by another centre so that the most promising drug candidates can be progressed to clinical trials.

How will this be achieved?

The MND Collaborative project involves the work of researchers from King’s College London, University of Sheffield, University of Liverpool, University College London, University of Oxford and University of Edinburgh. It is split into five separate sub-projects and these smaller projects each focus on a specific area. You can read more about these below.

Developing measures of disease activity

This will lead to a national approach to collect samples from those with MND as part of routine care to investigate potential biomarkers of disease progression. Biomarkers could then be linked to other data, such as ALSFRS-R scores and symptom information, and may help to find better ways to measure the effects of new treatments in clinical trials.

Improving the ALSFRS-R and research experiences

Revising the ALSFRS-R scale will help to provide a better measure of disease progression and one that more accurately reflects the changes that occur during the course of MND. This sub-project will also aid in developing ways to get involved in research from home so that it is easier and more accessible for people with MND to take part in research.

Using cell models to accelerate drug discovery

A network of five major MND research centres will be established to develop common approaches and standardised protocols to using stem cells for drug discovery, testing and validation. This means that everyone using stem cells for identifying and testing new treatments will follow the same methods, helping to make results more reliable.

Building a collaborative network for therapy discovery

These programmes across the UK will enable the most promising therapies to be tested in stem cell models and allow any results to be confirmed by at least one other centre. Testing the potential treatments will also involve measuring biomarkers of disease to see if these change, indicating whether the treatment is effective at slowing disease progression in the cells.

Training future leaders in MND research

Speeding up drug discovery and finding new therapies for MND relies upon talented researchers devoting their careers to studying the disease. This training will provide 12-month research placement opportunities for researchers to develop both specialist drug development expertise and a commitment to MND research in the early stages of their careers.

This project will not only help to combat two of the main barriers surrounding the drug discovery process, but also builds a foundation for a UK MND research community. Currently the process for therapy development and testing is happening bit by bit with teams working on their own or in small collaborations. It is hoped that, by research centres in the UK working together, this process can be transformed and lead to an approach where the search for new treatments is a coordinated effort. The project will bring together researchers, people with MND, charities and industry partners to accelerate drug discovery and testing with the aim of making MND a treatable disease within years rather than decades.

We would like to thank our supporters for their commitment to the work of the Association, which enables us to continue to fund MND research and invest in new projects such as this one.

I work in the Research Development team at the MND Association as a Research Co-ordinator. I completed my undergraduate degree in Biomedical Science and I became very interested in neuroscience throughout my degree. Following on from this, I did a Master’s degree in Molecular Medicine, with a focus on gene therapies. As part of my role, I will be helping the Research Development team to identify interesting updates in MND research and communicate these via the blog in an understandable and engaging way.

3 thoughts on “Global MND Awareness Day- Celebrating Collaboration

  1. I have just found this blog for MND. I was diagnosed in January 2021 which was such a shock. Hope is what keeps me going and the activity in trying to find a cure is exciting. I hope new findings will help those of us who are living with MND now. Thank you to all of you working in this field.

    1. Hi Janet

      Thank you for taking the time to read our blog and for your kind comments. I am so sorry to hear of your diagnosis. Research into a treatment for MND is continuing around the world and we will carry on keeping the MND community updated and informed. Your feedback is always appreciated.

      Kind regards
      Research Development Team

  2. Thank you for your work. My husband was diagnosed with MND here in Australia in September 2020. Like so many others, I search the web looking for hope from research such as this. It keeps us going. Thank you,

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