MND Scotland launches network to connect people with MND and researchers

Ahead of Global MND Awareness Day on Friday, 21 June, MND Scotland has launched a network of events to bring together researchers and people with, and affected by, motor neuron disease (MND) to help drive research through shared knowledge, ideas and lived experience.   

Following a series of successful pilot events in 2023, the Lived Experience and Researcher Network (LEARN) aims to connect MND researchers and people with MND. In the pilot, seven people supported by MND Scotland were invited to take tours of researcher’s labs, allowing researchers and people with MND to connect, while also giving researchers the opportunity to directly hear the opinions of people affected by MND on research.   

This year, LEARN will invite people affected by MND to meet with researchers in Aberdeen, Dundee, Edinburgh and Glasgow during September and October, and culminate with a whole day event in March 2025.  

Dr Jane Haley, Director of Research at MND Scotland, said:  “We know that people with MND are eager to learn more about research happening here in Scotland. MND Scotland’s dual role, delivering support and funding research, means we can provide opportunities for people to learn about research directly from the researchers themselves.  

“Building relationships between people with lived experience and researchers introduces real world perspective which helps ensure that research reflects the needs of people with, or affected by, MND. A better understanding of the condition and the needs of people affected by MND will also help researchers better communicate their work in a manner, and using language, that is accessible to everyone, no matter what their level of scientific knowledge.  

Dr Christopher Henstridge, a Principle Investigator who runs his own lab in Dundee, participated in the LEARN pilot. He said: “As a lab-based research team, we rarely get the opportunity to hear directly from people affected by MND about their experiences of the very condition we are trying to understand and treat. Last year, we hosted three people in Tayside affected by MND for an afternoon of lab tours and research discussions. For us, this was a great opportunity to practise talking about our work in a language that can be easily understood.

However, talking about our research is what we do every day, so the most impactful conversations were the personal stories so honestly and openly shared by people with lived experience. The strength and courage they show every day is inspirational and we really appreciated the interest and insight they showed in our research. I hope that the experience gave everyone that came along insight into the scientific process and instilled real hope that there are a lot of researchers like us pushing hard to find effective treatments and a cure. 

“When I come into work and discuss the research projects with lab members, I no longer think of “MND”, I think of the individuals affected by it and this emotional connection really drives me to ensure we are doing rigorous and impactful research. I believe these interactions are extremely important and I’m delighted to hear that MND Scotland plans to expand the LEARN scheme and develop new ways of bringing even greater numbers of researchers and people with lived experience together.” 

LEARN is a three-stage initiative that will conclude with an event in Edinburgh in March 2025, hosted in partnership with fellow MND charity, My Name’5 Doddie Foundation.  

Stage 1  

MND Scotland will host drop-in sessions in Glasgow, Edinburgh, Dundee and Aberdeen between September and October 2024. These sessions aim to form relationships between people with lived experience of MND and researchers.  

The drop-in sessions will be held at the following locations –   

Stage 2  

Stage 2 will involve laboratory tours, much like the pilot, allowing people affected by MND to get a first-hand view of MND research. This will give people a behind-the-scenes look at how MND research is carried out and provide an opportunity for those affected by MND to share their thoughts on research and how to make MND research more accessible.  

Stage 3  

LEARN will conclude, in March 2025, with a day-long event at Dynamic Earth, Edinburgh, where My Name’5 Doddie Foundation will be joining MND Scotland to work in partnership to deliver the event. The day will offer information for researchers and training opportunities for ECRs, along with sessions involving people with lived experience of MND.  The collaboration between MND Scotland and My Name’5 Doddie Foundation reflects the shared commitment between MND charities to push for a world without MND.  

More information about the events will be available on our website, via our newsletters and social media channels.  

To provide more details on the events and the aims of LEARN, the MND Scotland research team will host a webinar at 12.30pm on Friday, 26 July 2024. To sign up for the webinar, please complete this form

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