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EnCouRaging the future of MND research

EnCouRaging the future of MND research

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On the 19-20 July 2022, the MND Association welcomed early career researchers, and people living with and affected by MND to the University of Northampton for the inaugural MND EnCouRage UK event.

The unique two-day event was aimed at recognising, retaining and encouraging the important work of early career researchers who will be the future leaders of MND research. The event also provided the early career researchers an opportunity to see beyond the lab sample or data point by spending time with people living with MND. Listen to Dr Nick Cole, Head of Research, at the MND Association below who discusses what the event is and its importance.

Day 1 – Supporting the future MND research leaders

The first day of MND EnCouRage was aimed at helping the early career researchers build important skills, such as how to communicate their research to a non-scientific audience, how to secure funding as their career progresses and promoting their work.  

During the day, the early career researchers each presented their research in a 3-minute ‘lightning’ talk. These talks were to be presented again to people living with and affected by MND on day 2 of the event, so this was a perfect opportunity for constructive feedback from senior researchers, peers and the MND Association Research team. The breadth of content was huge, including talks on using models to understand the disease, nutrition in people living with MND, the impact on carers, investigating complex biological mechanisms of the disease and much more.

Lee Millard

One of the highlights of the day was hearing Lee Millard, who is living with MND, and Professor Ammar Al-Chalabi have a conversation about their perspectives on life and the current issues relating to MND Research. Lee, who has a background in science, spoke frankly about his diagnosis and how it affects his life. Ammar and Lee then discussed a range of research topics, including ways of trying to predict progression and survival, clinical trials, genetic testing and more. The session then turned to the audience, with the researchers asking both Ammar and Lee a range of interesting and thought-provoking questions. Lee, with his cheeky smile and fast wit, then ended the session by telling the early career researchers to “see him at the end” if they weren’t planning to stay in MND Research.

Day 2 – Bringing researchers and people living with and affected by MND together

The second day of the event focussed on giving the researchers an opportunity to meet, connect and present their research to people living with and affected by MND. We know that many early career researchers have never met a person living with MND, particularly the case as a result of the pandemic. The day provided gave an opportunity for people living with and affected with MND to have a ‘front row seat’ to hear the latest MND research and ask any questions. Throughout the day, discussions flowed around the story of the person living with MND, how their diagnosis had impacted them and their families, the areas of MND research that are important to them, and the reasons the early career researchers decided to research MND. We were amazed how everyone embraced having open and sometimes difficult conversations, helping to bring the community together.

Each of our early career researchers gave their 3-minute presentation again, with people living with and affected by MND expressing how well presented the talks were, with often complex research concepts presented in an understandable way and a clear explanation of what the work will ultimately bring to people living with MND.

The second day of the event also coincided with announcement of a new MND Association initiative known as the MND Community Research Advisory Network. This network aims to develop a collaborative public engagement network, for people living with or affected by MND, researchers, healthcare professionals and anyone else with an interest in MND research to share expertise and help shape our work through a range of involvement opportunities. This network is to be shaped by all of those involved and we are excited to work closely with the community to develop it. More information will be coming soon about how you can get involved, so watch this space.   

Richard Parker and HRH The Princess Royal

We were honoured to have the MND Association Royal Patron, HRH The Princess Royal attend the event. HRH spent time with the delegates, listened to their stories and asked the early career researchers about the research they are working on.  

What did people who attended think of the event?

After 3 years of trying to put this event together, and being hampered several times by COVID, we were thrilled by the response and feedback from those who attended the event. It was also amazing to see the connections built from the day transfer to outside the event, with researchers and people living with MND connecting on twitter. As nicely put by Dr Scott Allen, a guest presenter at the event from the University of Sheffield, “collaboration in MND is the future […] we’re better together as a collective” and we hope this event will result in long-lasting collaborations within the MND community.

You can read some of the feedback from the event below, or check out the #MNDEncourageUK on twitter to find out more about the event and hear more feedback.

We are now excited to start thinking about next year’s MND EnCouRage UK and how we can make it even better! Once the dust settles, we will bring you more information on how you can get involved in next years event!

As ever, we could not have put on an event like this without the support of the MND community. A massive thank you to all who attended, especially, the people living and affected by MND for spending their time with us, the early career researchers for enthusiastically taking part, the guest presenters who gave inspiring talks and our royal patron, HRH Princess Royal for spending time with delegates.

I joined the MND association as a Research Information Co-ordinator in September 2021. I graduated from the University of Nottingham with a PhD in Chemistry in 2020. After finishing my PhD, I joined an R&D company based in Nottingham where I spent my time synthesising potential new drug treatments for a wide variety of diseases. As part of my role I will help the team communicate the latest MND research on this blog, as well as on our twitter page (@MNDResearch).