What attendees learned at the Community of Research and lived Experience (CORE) event  

On 3 March 2025, MND Scotland and My Name’s Doddie Foundation welcomed people with and affected by MND from Scotland, and MND researchers from across the UK, to Dynamic Earth in Edinburgh for our inaugural CORE event. It was a wonderful experience which provided a platform for the MND community to come together and share their knowledge, opinions and experience on MND research through our shared goal of a world without MND.

The first sessions focused on helping researchers to develop important skills for their career. MND Scotland’s lived experience Scientific Advisory Panel (SAP) member, Alan Ogg, gave an insightful presentation on how to write scientific information for a lay audience. This was followed by a session from the charities’ Communications teams on the importance of effective and responsible research communication, and a talk from Professor Gareth Miles on how to write good grant applications. Attendees also heard from Professor Tom Gillingwater who talked about the progression of his work from fundamental research into clinical trials. Researchers felt these sessions were really helpful

“The morning session was very informative for ECRs [Early Career Researchers], especially the talks by Prof Gillingwater about the track from basic science to clinical applications, and by Alan Ogg about writing a lay summary.”

“As an ECR, it was really useful to learn and get advice from the experienced researchers who were at the event both as attendees and presenters.”

People with and affected by MND joined us for the afternoon session to share their lived experience perspectives with researchers, with the aim of benefitting future MND research. The afternoon started with a Q&A panel session where Graham Douglas, Sandra Harvey and David and Linda Arthur kindly shared their experience of MND.

“A big take home from the Q&A panel for me was that everybody’s experience of MND is different, and that the care, support and research need to consider this.”

“As a researcher, hearing from people that have lived experience is so important! It motivates and inspires me, and reminds me why I started doing this in the first place.”

This was followed by round table sessions,, where attendees were encouraged to discuss topics relating to MND and MND research. To start the session off, each researcher at the table briefly presented their research to the table, giving attendees information about current MND research.

“I enjoyed meeting with researchers and understanding their different areas of expertise. I gained an understanding of the huge amount of in-depth research that is going on.”

“The afternoon round table sessions were very informative. At my table were two researchers from Aberdeen and one from Dundee. I also met a researcher from Edinburgh at the event and all of them are very passionate about their research.”

“Mixing the tables up to ensure there were a mix of individuals was a great idea and having the questions as prompts really got conversation flowing. It was good to share perspectives and to be able to provide information on the research world (how it works, why things take so long and cost so much money).” I learnt a lot from those affected by MND during the discussions.”

“The discussion sessions later in the afternoon allowed myself, as a bereaved carer, and others caring for loved ones with MND, to share practical experiences which will inform some of the research.”

While the in-person discussion sessions took place, we hosted two online sessions via Zoom for those unable to attend the event in person. These mirrored the in-person discussions as researchers presented their work before each group went on to discuss a range of topics.

“Having an online session for those who couldn’t attend in person was great. As ever, it was a great opportunity to hear the perspectives of people living with MND as a researcher. It was also great to see an event hosted by both charities. I always learn things when hearing people living with MND talk about their experience.”

“It was a good opportunity to interact with other people who have MND and those involved with research. As a user of speech software it was helpful to have been sent an outline of the questions to be discussed in advance, so I could prepare text for my SpeakUnique voice.”

Both charities were delighted to see so many people turn out for the first CORE event, and we’d like to extend a huge thank you to everyone who came along and shared their experiences on the day.

To finish reflecting on the event here are some comments from attendees on their experience at CORE.

“CORE gave the opportunity for researchers to engage with people with lived experiences of MND, answer questions they had and gain feedback on how to improve MND research. I thought the event was fascinating. The opportunity to get researchers and people with lived experience of MND together, sharing ideas is beneficial to the future of MND research.”

“I thoroughly enjoyed the event as it gave me the opportunity to learn more about current and ongoing research. I left the event feeling tired in a good way. My brain had a thorough work out taking on all the information about research projects.”

“The conversations I had at the event helped me understand what goes into the research and the commitment of the researchers to improving MND diagnosis, treatment and care.”

“I extremely enjoyed the CORE event. These types of events help us to build a community between researchers and people with lived experiences so the sharing of information and experience can more easily flow both ways to drive future MND research.”