To fight motor neurone disease, we need a steady stream of enthusiastic and passionate scientists who can bring new ideas and push boundaries. Often, we talk of MND research as a puzzle, with each new piece of research adding to the bigger picture. The scientists just beginning their careers, known as early career researchers, could hold the final piece to the puzzle that will lead to effective treatments of the disease and potentially a cure.
Science is an exciting and impactful profession that is rapidly advancing but there are many challenges across the world that still need to be overcome. Each of these challenges require budding scientists to develop new and innovative solutions. We want researchers to stay within the field of MND, to keep and develop their knowledge, skills and their potential to help us find effective treatments and improve care for everyone living with MND.
To help achieve this, MND EnCouRage was born. A 2-day event which aims to retain, encourage and nurture early career MND researchers. The unique event also brings together researchers and people living with and affected by MND to connect and learn from the different perspectives.
Watch below to find out more about the event.
Over the last couple of years, awareness for MND has skyrocketed. With increasing interest from global news broadcasters researchers need to be able to communicate their research to non-scientific audiences.
MND EnCouRage kicked off with an interactive workshop from Dallas Campbell, who has years of experience communicating science through TV shows such as Bang Goes the Theory. Dallas spent a couple of hours talking through his ‘survival guide’ for giving presentations. This included how to cope with nerves, the best use of visual aids and how doubting yourself can often hold you back.
As their careers develop, early career researchers may be approached by journalists to discuss their research. On day 2 the researchers took part in media workshops. They got tips and tricks on how to give the best interviews, and some even put these skills to the test through interviews with the MND Association Communications and Research team. The Science Media Centre also spoke about how early career researchers can play an important role in providing accurate and evidence-based context as experts for news stories.
With 46% of UK adults using social media to find out the latest news, social media could be a powerful tool to discuss the latest updates in research. The early career researchers were encouraged to use social media as experts in the field to help reduce misinformation. They were also given tips on how to deal with the potential pitfalls that come with using social media.
It’s [communicating research to non-scientific audiences] a skill that we don’t always have the chance to learn.”Allan Shaw, University of Sheffield
Showcasing the breadth of MND research
To continue the theme of communicating research to non-scientific audiences, the early career researchers were given the task of creating and presenting 3-minute ‘lightning’ talks. These talks would then be presented to our invited guests on day 2 – those living with and affected by MND.
On day 1 the researchers practiced their talks, gaining feedback from senior researchers, peers and the MND Association Research team. With many of the early career researchers used to only presenting to scientific audiences, they heard the importance of highlighting why the research is important and why it is being undertaken.
On day 2 our invited guests had a ‘front row seat’ to the latest MND research, hearing new and improved presentations from the early career researchers. The breadth of MND research presented was huge. Topics included understanding the biological mechanisms that happen in the body in MND, understanding other symptoms such as cognitive and behavioural changes, using artificial intelligence to predict disease progression and more.
It’s exceeded my expectations. Really worthwhile in terms of actually understanding what amazing amount of work is going on and also the range of the work and how people collaborate, which is what science is all about.Daniel Ackerley
Breaking down barriers to understanding research
While our early career researchers are normally the ones who will read and write scientific papers, the MND community is becoming more and more active at looking at the science behind the headlines. Scientific papers contain accurate information and can give more context of exactly what happened in a research study. However, understanding how to read a scientific paper and pulling out the key information is a fine art.
Professor Ammar Al-Chalabi ran an interactive workshop, for both researchers and our invited guests, on how to read a scientific paper. After talking through some top tips, he set off teams to work together to find key pieces of information from the paper. The buzz in the room was electric! By the end of the workshop everyone had some tools to apply to the next big research story to hit the headlines.
The importance of different perspectives
MND EnCouRage is a unique event as it brings MND researchers and people living with and affected by MND together. It is not often that either group spends much time with the other. One highlight of the event was a session where we heard the experiences of Stephen, who is living with MND, Kirti, who cared for her husband and now volunteers for the MND Association and Professor Chris McDermott, a neurologist. It was so insightful to hear voices from the whole MND community come together to share their experiences and hammer home the importance of the work of the early career researchers.
Stephen and Kirti spoke about the impact that delays in diagnosis have, for both the person living with MND and those around them. While Professor McDermott spoke abouthis first experience of giving someone the diagnosis of MND as a junior doctor and how this shaped him as a doctor. He described how even now the emotion of giving the diagnosis can hit him unexpectedly and the importance of surrounding people living with MND with the care they need.
Stephen ended the discussion with the inspirational message that “MND may take my body but I’m not going to let it take my mind” and how people living with and affected by MND can play an important role in discussing, planning and undertaking MND research.
This is the first conference I have attended where there are people here who are living with MND or have been affected by the disease. It’s been really eye opening for me and also reinforced why we have such a collected effort to find therapies for this disease.Sarah Granger, University of Sheffield
This event would not have been a success without the support of the MND community. A big thank you to everyone who attended and enthusiastically took part. We are now excited to start working on next year’s MND EnCouRage event and how we can continue to build on its success. If you would like to get involved in next year’s event, more information will be available on our website in early 2024. We will, of course, keep you updated through our usual channels.
To bring you the latest research from the event, we’ve set our early career researchers another challenge, to communicate their research through blogs! Keep your eyes peeled for new blogs showcasing their amazing research.