Foundation attends the European Network to Cure ALS (ENCALS) conference 2025

13 June 2025

Last week our Director of Research, Dr Madina Kara and our Research Funding and Communications Officer, Dr Nicole Hindley attended the European Network to Cure ALS (ENCALS) conference in Turin, Italy. 

ENCALS brings together researchers, clinicians, industry partners and charities from Europe and beyond with the aim to collaborate to cure MND/ALS. This year, the meeting had more attendees than ever before with almost 1,000 participants from over 60 countries, showing the current research momentum and the increasing number of researchers moving into the field.

The three day conference was packed with talks and poster presentations on current work from researchers and clinicians, many of those being early career researchers (ECRs), whose attendance and participation is incredibly important, as they are the next generation of MND researchers. There were sessions focusing on a wide range of MND research including: epidemiology (the study of how diseases and other health-related conditions are distributed in populations and the factors that influence their occurrence), genetics, disease mechanisms and biomarkers. 

It was great to see many of our funded researchers, scientific advisors and Research Review Committee (RRC) members present their work. This included Professor Ammar Al-Chalabi (King’s College London and Co-Director of the UK MND Research Institute) presenting on the Lighthouse II trial, which has recently been terminated after an interim analysis showed Triumeq has no effect on outcome measures. Whilst this result is disappointing, identifying ineffective therapeutics swiftly and presenting findings to the MND research community is important to ensure learnings can be used for future research and clinical trials.

There were also presentations from Professor Ludo Van Den Bosch, the chair of our Discovery Network Advisory Board, on pre-clinical models for MND research and Professor Pietro Fratta, a member of our RRC and one of our funded researchers, on TDP-43 mediated mis-splicing: losses, reactions and opportunities.

There was also plenty of opportunity for insightful conversations and debate into the current challenges and progress being made in the MND research field, including an interesting interactive debate on the use of artificial intelligence (AI) in research and whether it is time to introduce it into clinical practice or whether it is still too early and more work is needed before it can be used.

Conferences like ENCALS present an extremely valuable and unique opportunity for collaboration and networking amongst researchers and funders. We asked some of our funded researchers about why attending conferences like ENCALS are important for researchers and funders. See what they had to say here.

Dr Ruxandra Dafinca is a Research Fellow at Oxford University, member of our RRC and has been recently awarded a Catalyst Award, she said: 

“Attending ENCALS is important for researchers, as it provides an excellent opportunity to stay informed about the latest scientific advancements from colleagues and discuss our own research in a friendly environment. The conference also gives plenty of opportunity to network with other scientists and clinicians, to establish new connections, but also to catch-up in person with current collaborators from other countries. It is always an inspiring meeting! I think it is important to have charities like My Name’5 Doddie Foundation attend these conferences as they are a platform for meeting with their funded researchers and hear directly how science is progressing.”

Read the latest update on the Lighthouse II clinical trial here and find out more about ENCALS through their website.