Increasing our understanding of MND, improving care and finding new potential treatments for the disease relies upon very talented and dedicated scientists working in MND research. To encourage the best and brightest minds to stay in the field and build a continuous stream of future leaders in MND, we need to make sure that scientists who are just beginning their careers feel supported and are given opportunities to develop their knowledge and skills. After all they are the next generation of MND research leaders who, with their energy and new ideas, may hold the key to fighting MND in their hands.
Our MND EnCouRage event was designed for this very reason. This two day event brings together early career researchers, and people living with and affected by MND to discuss a range of research topics, share perspectives and learn from each other.
At the event, the early career researchers share their work with the MND community, hear advice from senior researchers in the field and participate in workshops to build skills which will help them share their research with wider audiences. People with and affected by MND are invited to attend for the afternoon on the second day to hear the latest updates in research, build connections with early career researchers, share their personal experiences of MND and ‘ask the experts’ their questions about research.
Last week we held our third MND EnCouRage UK event which saw 22 early career researchers from across the UK and Ireland and over 20 people with or affected by MND attend.
Shining a light on the work of early career researchers
Early career researchers play a hugely important role in MND research. They provide different perspectives to research questions and often come up with new and innovative ways to overcome challenges in the lab. As part of this event, the early career researchers were invited to share their work to people with and affected by MND in 3 minute ‘lightning talks’.
As well as talking about their work to other scientists, it’s vital that researchers are able to communicate their research to non-scientist audiences. These lightning talks are a great way for them to showcase their work to lay audiences and hear about the work that other researchers are doing in MND.
On the first day, they practiced giving their presentations to other early career and senior researchers to got tips and guidance on how to improve these talks. Then on the second day, the early career researchers delivered their improved presentations for people with and affected by MND.
These talks allowed the community to hear the very latest updates in MND research and ask the early career researchers questions about their work. This year, the research presented covered a wide range of topics from developing new tools for diagnosis to what happens in the brain in MND and discovering new potential treatments.
It’s not just important for them to meet us to understand that there’s people behind the disease, but also for us to meet them to understand, you know, the amazing work that they’re doing.
Anna, person with MND.
Talking through the challenges of designing clinical trials
Clinical trials are a very popular topic in MND research as there are more and more trials being announced to test potential treatments of MND. With clinical trials taking a long time and being very costly to set up and run, it is really important to make sure that trials are designed in the right way. If clinical trials aren’t designed properly it can mean that the results of trials aren’t reliable, making it difficult to get a clear picture of whether the possible treatment really does show any signs of benefit for MND. As well as making sure the trial is scientifically sound, it’s also vital that clinical trials are designed in a way that makes it as easy as possible for people to take part.
Professor Ammar Al Chalabi led a round table discussion session for researchers and people with and affected by MND about clinical trials. The session focused on the design of clinical trials and led to some thought provoking discussions as the community shared different perspectives about some areas of trial design. Some of the questions put to the group included ‘Should we include placebos in a clinical trial?’ and ‘Should we carry out trials for drugs that might only have a small benefit or should we focus on finding a cure?’.
The session helped early career researchers see the importance of involving people with and affected by MND when designing trials and trying to make studies as friendly as possible for people with MND, whilst still being scientifically sound. For example, if there is a smaller chance of being on placebo (dummy drug) then more people with MND will want to take part in the trial but the placebo group can’t be removed altogether as this wouldn’t be a reliable trial. Finding the balance between these can be difficult but it is vital that trials are designed with people with MND in mind.
Building skills for the future leaders of MND research
One of the main aims of MND EnCouRage UK is to help early career researchers build the skills they need for a successful career in MND research. Part of this means being able to talk about their work with media, members of the MND community and the wider general public. Researchers should be able to present their findings to the people that stand to benefit from their work in a way that is understandable.
This is why the event kicked off with Professor Simon Hall from the University of Cambridge hosting an interactive workshop on how to deliver engaging presentations. The workshop included tips and tricks to grab the attention of audiences and leave them feeling inspired. It is thought that the average person has an attention span of around 8 seconds so it is important to make people interested in the presentation right from the start and keep them engaged throughout.
The early career researchers participated by thinking about their presentations and how they could improve them based on the strategies that were shared in the workshop. The session also made everyone think about how to share complex information without overwhelming the audience and going into too much detail. The workshop was a highlight of the event for many and provided skills that will stay with the early career researchers throughout their careers when presenting their research to a variety of audiences.
It’s easy to go and sit in the lab, and get good at science, but unless you can communicate that science there’s no point having done it.
Ruaridh, PhD Student from University of Sheffield
With the increased awareness of MND that has happened over the last few years, MND research has been in the headlines more than ever before. This is great news for bringing the importance of tackling MND and improving the lives of people with the disease to as wide an audience as possible. However, it can be daunting for anyone including early career researchers when they are approached by people in the media to share details of their work or comment on news stories. It’s a good opportunity for them to share their research but it is also important that they feel ready for the interviews that may lie ahead. During the second day of EnCouRage, we held media workshops to help them prepare for the attention from journalists that may come their way in the future. These workshops involved sharing advice on preparing for media interviews and saw the early career researchers practice being interviewed in front of a camera.
As well as the interview training, there was another workshop on using social media to promote and communicate the outcomes of research with the community. Social media can be a great way to show the wider public what research is happening in the field, yet many early career scientists don’t use it to share their work. This workshop aimed to give the researchers more confidence to use different social media platforms to discuss MND and gain experience of using analogies, graphics and videos to help explain complex scientific topics to non-scientists. They also listened to a presentation by David Taylor from ALS Canada who discussed how he uses social media to help reduce the spread of misinformation about research within the community.
This year’s event was a massive success and we would like to thank everyone involved in making this happen. Thank you to LifeArc for their continued sponsorship of the event and thank you to all of the presenters, senior researchers and clinicians who gave up their time to attend. A huge thanks to Professor Simon Hall who kicked off the event with an amazing workshop and shared his personal connection to MND. Most importantly, thank you to all of the early career researchers and people with and affected by MND who attended and spoke this year, without you this event wouldn’t be possible.
MND EnCouRage UK plays a huge role in bringing together early career researchers from across the UK who all share a common goal. Even though they are working on different topics within their research, it is essential that they come together to see how their work fits into the wider MND jigsaw and how they are contributing towards a world free from MND. Planning is already underway for next year’s event and we are delighted to be able to continue to support early career researchers to stay in the field and become future leaders in MND research.
