MND Scotland and My Name’5 Doddie Foundation are teaming up to host a day-long event for people in Scotland affected by MND and MND researchers. This inaugural, Community Of Research and lived Experience, CORE, event will take place on Monday 03 March 2025 at Dynamic Earth, in Edinburgh and will be free to attend. 

The CORE event will bring together people affected by MND in Scotland and researchers to provide the opportunity to build a community of people who all have a stake in MND research, and share the same goal of finding meaningful treatments for MND through research.  

This community will provide the chance for people affected by MND to hear about research from researchers, and for researchers to learn about the experience of living with MND. It will also provide early career researchers (ECRs) with the opportunity to meet other ECRs and learn important skills for their future in MND research. Crucially, by bringing people together we hope to form a community that will create an environment where everyone is engaged in the topics and able to contribute their knowledge, experiences, and opinions. 

CORE forms part of MND Scotland’s series of Lived Experience And Researcher Network (LEARN) events and we are excited that My Name’5 Doddie Foundation will be joining us to co-deliver this full day event.  

The program will be split into morning and afternoon sessions, with people affected by MND joining for the afternoon. Before lunch, ECRs will be able to participate in tutorials on writing well for a lay audience, and how to write successful grant applications. We will also be joined by Professor Jenna Gregory and Professor Tom Gillingwater who will give presentations on their research. 

Those affected by MND will join for lunch and in the afternoon, all attendees can participate in sessions exploring what is important to them in research; and to hear about the research being carried out by the ECRs present. 

Spaces for the event are limited so we will initially invite people affected by MND to register their interest in attending, and invite researchers to apply to attend. Please let us know by 24 Jan 2025.  

By the end of January, we will be in touch with all who stated interest to let them know if they have a space at the event. For researchers wishing to attend, priority will be given to those currently supported by MND Scotland or My Name’5 Doddie Foundation. 

Key information: 

• Registration/Application period open: 22 Nov 2024 

• Registration/Application period closes: 24 Jan 2025 

• Event date: 03 March 2025 

• Event location: Dynamic Earth, Holyrood Rd, Edinburgh EH8 8AS 

• Time of event: 09:00-17:00
  

You can access the registration form for people affected by MND by clicking here.

You can access the application form for researchers by clicking here. 

A provisional program for the day can be found by clicking here. 

Paul Jensen, Research lead at MND SCOTLAND:

“CORE is the culmination of a series of events hosted by MND Scotland to really engage people affected by MND with researchers working in the field of MND research right now. We believe it’s vitally important that people with MND can share their first-hand experiences to help shape research. We’re proud to partner with My Name’5 Doddie Foundation on this event in March to bring the MND community together.” 

Dr Madina Kara, Director of Research at My Name’5 Doddie Foundation:

“We are committed to involving and engaging people with lived experience of MND in our work and ensuring their needs and priorities are at the heart of our activities. We are delighted to partner with MND Scotland to facilitate bringing together the MND community to share their knowledge. This event will enable people with lived experience of MND to provide invaluable advice to researchers, particularly those early in their careers, to ensure they develop relevant and impactful research”.

Kristine Roberts, CSO Clinical Fellow in Aberdeen:

“MND Scotland has a great relationship with their researchers and people with lived experience of MND. This was exemplified at the Aberdeen LEARN event I attended earlier this year which really brought the local MND community together. I found it invaluable in helping me to understand the perspective of MND from those with lived experience and this has really informed and focused my research going forward. 

The upcoming MND Scotland and My Name’5 Doddie Foundation CORE event will build on these successful LEARN events by continuing to bring together the MND community to share ideas and perspectives. The event will also give us ECRs a valuable opportunity to engage with researchers from other institutions and partake in workshops that will help improve our science communication and grant writing skills. This will only strengthen the MND research we are undertaking and bring us closer to finding meaningful treatments for MND.” 

We look forward to seeing you at the event.