Driving MND research on Global MND Awareness Day

Driving MND research on Global MND Awareness Day

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Each year, MND Associations across the globe marks 21 June as a special day of recognition, acknowledging the impact that MND has on people around the world. MND is a global problem. It does not discriminate, and for every person diagnosed the effects of the disease will be forever felt by their families and friends.

In acknowledgement of the work carried out by researchers and the support given by the wider MND community, and to mark Global MND Awareness Day, we will be taking a closer look at some of the research funded by the MND Association and how this is #DrivingMNDResearch through a week-long series of blogs.

How is the MND Association #DrivingMNDResearch?

As a charity, the MND Association is proud to take a leading role in the global fight against MND – Driving MND Research – by funding research, facilitating collaboration, and raising vital awareness. We remain the biggest charity funder of focused MND research in the UK.

Thanks to the generous donations from our supporters, at the end of May 2021 we had a research grants portfolio consisting of 82 grants with a total value of around £14 million. Already this year, we have awarded new funding of £700,000 – reflecting our investment in progressive research. And funding is being made available to projects which have been adversely affected by the pandemic – ensuring that vital work can continue. There are currently around 160 researchers involved in the grants that span all areas of MND research and care:

  • Identifying therapeutic targets. These projects focus on the pivotal biochemical processes involved in the disease that will help us better understand the causes of MND and will provide a starting point for the development of new treatments.
  • Developing treatment pipeline. Once therapeutic targets have been identified, the most promising will be turned into potential new treatments. Once they have been proven safe and effective in models of MND, they will then be carefully tested in people.
  • Understanding clinical progression. These projects aim to develop a detailed understanding of how the disease manifests and progresses in people to ensure that fundemantal laboratory research can be clearly linked to the ‘real world’ events occurring in people with MND.
  • Improving standards of care. Ensuring that the clinical management of MND is informed by the priorities of people living with the disease and their families is vital. These projects ensure that this support is underpinned by a strong evidence base.

Our International Symposium on ALS/MND is the largest medical and scientific conference specifically for ALS/MND, and the 2020 event – the 31st in our history and first virtual event – attracted more than 1800 delegates from 48 countries. Although the Symposium is aimed at researchers and healthcare professionals, the virtual format meant there were no restrictions on travel, allowing for a diverse audience including people living with MND. Sixty delegates stated they were living with MND in the registration process.

Encouraging early career researchers

It is important that the best and brightest young researchers stay working in MND research. As of 31 May 2021, the Association is funding 14 PhD studentships. Through our successful PhD studentship programme, we have a track record of attracting and funding promising young scientists to develop their careers in MND research. PhD students we have funded in the past have gone on to work in some of the most prestigious laboratories and research institutes in both the UK and abroad.

To further promote the importance of the work being carried out by early career researchers, we had planned to hold the first MND EnCouRage UK on 22-23 June 2021, to coincide with MND Awareness Day. However, due to the ongoing unpredictability of Covid-19, and to ensure the safety and well-being of everyone involved, we made the difficult decision to postpone the event until June 2022.

The aim of this event is to bring together early career researchers with people living with and affected by MND and give them the opportunity to present their work to their peers and a non-scientific audience. There will also be many talks from well-respected members of the research community and beyond, with plenty of opportunity to build long-lasting relationships with other research teams and people with MND. Having already postponed the event from June 2021 due to Covid-19, we cannot wait to host it next year – with over two years of planning, it’s going to be amazing!

What else do we fund?

As well as our PhD studentships, we are funding (as of the end of May 2021):

  • 27 Biomedical Project Grants – we are committed to playing a key role in ending MND. Our biomedical research programme is delivering significant and measurable advances in understanding and treating the disease. We only fund research of the highest excellent and greatest relevance to MND.
  • 13 Healthcare Project Grants – the MND Association has a longstanding record of supporting healthcare research and therapeutic trials. Our goal is that healthcare research we fund will lead to improvements in treatment, disease management and quality of life for people with MND, their families and carers and strengthen the case for statutory funding of high-quality MND care. We also have an established record of supporting studies in collaboration with other agencies, such as Marie Curie and NIHR to fund research into improved care for those living with MND. Two of our current healthcare projects are jointly funded with Marie Curie.
  • 1 Special Grant to the University of Oxford.
  • 3 Clinical Fellowships – our Lady Edith Wolfson Fellowship Programme, in partnership with the Medical Research Council (MRC), has the aim of attracting and developing outstanding young clinicians in MND research in order to create future scientific leaders in this field. Central to the MND Association’s research strategy is the need to develop opportunities for the scientific training of your clinicians, to strengthen the links between the laboratory and the clinic. The MRC/MND Association Lady Edith Wolfson Fellowships aim to support clinicians wishing to pursue research into the pathogenesis and treatment of MND.
  • 8 Non-Clinical Fellowships – since 2015, the MND Association has awarded non-clinical fellowships to nurture the best post-doctoral researchers and develop the MND research leaders of the future. The Non-Clinical Fellowships are currently funded by the MND Association with the support from the Wolfson Foundation and other donors.
  • 16 Small Grants.

You can read more about research we fund on our website.

To help address the need for better treatments for people with MND, the MND Association has joined forces with LifeArc this year to create a £1 million joint fund aimed at accelerating promising, translational research projects from across the UK and Republic of Ireland in order to develop new treatments or repurpose existing treatments for MND.

The joint funding scheme invites applications for treatment-focused, milestone-driven medical research projects that are on the translational pathway (taking a drug discovery right over to its development stage). We hope that research jointly funded by MND Association and LifeArc will generate valuable outcomes that can secure follow-on funding (additional translational funding or partnering with/licensing to industry) to support continued development of a therapy for MND and progression towards clinical trials. Full information can be found on the LifeArc website.

The MND Association’s £500k commitment to this call was made possible thanks to the funds raised by Kevin Sinfield OBE when he completed his 7in7 Marathon Challenge in December 2020. The efforts of Kevin and his team alongside the generosity of all those who sponsored him have enabled the Association to invest over £2m into new and existing projects across our care and research programmes.

Five decades of research

The Association’s commitment to understanding MND and the relentless search for treatments is now in its fifth decade. We will not stop until we have reached our vision – a world free from MND. Realising this vision means investing more funds in research, developing strategic partnerships with the research community and research funding bodies, and ensuring that advances in understanding and treating MND are communicated as quickly and effectively as possible.

How can you get involved?

You can help us increase awareness of MND research by sharing any of the Association messages which will be posted across TwitterFacebook, and Instagram using the hashtag #DrivingMNDResearch. Please share your involvement with the MND Association and the invaluable part you play in #DrivingMNDResearch.

You can also:

For more information and to download our #GlobalMNDAwarenessDay graphic to use, head to our website.

The MND Community is a passionate, dedicated and focused team of people contributing expertise, time and money to the collaborative effort to find treatments and ultimately a cure for this brutal disease.

We are proud to work with every one of you and thank you for your continued support.

The MND Association’s vision is a world free from MND. Realising this vision means investing more in research, further developing partnerships with the research community, funding bodies and industry, while ensuring that advances in understanding and treating MND are communicated as quickly and effectively as possible. Our Research Development team, composed of 11 members, work hard to achieve this. Principally, the Research Information team within this are involved in communication activities including this MND Research blog.