In July, we held MND EnCouRage UK 2025 in Loughborough, which saw 21 early career researchers from across the UK and Ireland and over 25 people with or affected by MND attend. The two-day event provides ECRs with new skills, networking opportunities, career advice and an understanding of what it’s like to live with MND. It also brings together ECRs with people living with and affected by MND, to build partnerships and understand the research interests of the MND community.
This blog was written by one of the ECRs who attended the event this year, Jade Lucas. Jade is a PhD Student at the UK Dementia Research Institute at the University of Edinburgh.
In July, I had the privilege of attending Motor Neurone Disease (MND) EnCouRage UK, a unique and powerful gathering unlike any other I’ve experienced as a researcher. Organised by the MND Association, this conference brought together not only ECRs from across the country, but also senior researchers, industry leaders, MND Association staff, and most importantly, people living with and affected by MND.
What made this event truly special was its community-driven spirit. It wasn’t just a place to present data or network, it was a space to connect deeply. We heard about each other’s research journeys, shared challenges, and found common ground in our passion for improving the lives of people living with and affected by MND. The sessions were engaging and thoughtfully structured covering topics ranging from advances in MND research to career progression and even the power of media training and social media in amplifying our voices as researchers.
During the conference, I had the opportunity to give a 3-minute presentation on my research: Why do some people with MND survive longer than others? I shared insights from my work using postmortem tissue to understand differences in disease progression. The questions and conversations that followed were thought-provoking and inspiring. It was incredibly affirming to see so much curiosity and shared purpose across disciplines.
One of the most motivating aspects of the conference was the diversity of research being done by ECRs. From exploring the links between MND and neuropsychiatric disorders through brainwave and genetic data, to investigating the potential of skin biomarkers to detect ALS-related abnormalities years before symptoms appear. Each perspective added something new, highlighting just how many angles are being explored in the fight against MND.
Above all, what grounded and inspired me most was the voices and stories of those with lived experience of the disease. Hearing directly from them gave new meaning to the work we do. It was a reminder that every data point, every sample, every late night in the lab has a human story behind it. These conversations reconnected me with the purpose of this work and the urgency of our collective mission. The energy at the conference was contagious. We were united, early career researchers, seasoned scientists, clinicians, advocates, and families, by a shared goal: to advance research, improve lives, and work towards effective treatments for MND. I left feeling recharged, supported, and more determined than ever. Conferences like this don’t just move science forward, they bring the MND community closer together, which is integral to our shared progress.
We would like to thank Jade for taking the time to write this guest blog about her experience and also thank everyone involved in making MND EnCouRage UK 2025 such a success.
