2024 End of Year Reflections from Dementia Researchers

In this special episode, recorded in Montreal, Canada, we bring you highlights from the International Symposium on ALS/MND 2024 organised by the MND Association. Host Dr Alys Griffiths, Senior Research Fellow at the University of Sheffield, is joined by three expert guests to discuss the latest research and breakthroughs in Amyotrophic lateral sclerosis (ALS) and motor neuron disease (MND).

Dr Megan Fowler, a postdoctoral researcher from Flinders University, shares insights into her work on endogenous retroviruses and their role in ALS. Professor Eneida Mioshi, from the University of East Anglia, explores cognitive and behavioural changes in ALS and FTD and their impact on care. Dr Ahmad Al Khleifat, a group leader at King’s College London, highlights advancements in genomic research and efforts to diversify ALS studies globally.

Key topics include promising therapies like antisense oligonucleotides, the integration of patient voices in research, and the power of collaboration to accelerate progress.

Here are 10 key takeaways:

• Collaboration Is Key: The symposium emphasised the importance of global collaboration in advancing ALS/MND research, with researchers and patient fellows working together to address diverse challenges.
• Emerging Focus Areas: A shift was noted from traditional focus areas like TDP-43 to more diverse and specific ALS subtypes, reflecting the complexity of the disease.
• Diversity in Research: Efforts to diversify genomic research and clinical trials were highlighted, with initiatives to include underrepresented populations from different ethnic backgrounds.
• Patient-Centred Approaches: Talks stressed the need to align clinical and research priorities with patient and family perspectives, especially in decision-making around therapies.
• Open Science Initiatives: New tools, like spatial transcriptomics applications, aim to foster collaboration by allowing researchers to plug in data and generate comparative insights.
• Interdisciplinary Care: Presentations highlighted the role of multidisciplinary teams in supporting decision-making, such as regarding gastrostomy, while considering patients’ and families' preferences.
• Longitude Prize Launch: A major highlight was the introduction of a large-scale, collaborative initiative aimed at accelerating drug discovery using open datasets and innovative AI methodologies.
• Antisense Therapies: A dedicated session focused on the promising role of antisense oligonucleotides in ALS treatment, with updates on their continued success in clinical trials.
• Patient Fellows' Impact: Contributions from patient fellows provided unique insights and ensured that research remains grounded in lived experiences, fostering meaningful dialogue between stakeholders.
• Continuity in Research: The event reinforced the importance of long-term monitoring and continuity in both research findings and patient updates, creating a more holistic understanding of disease progression.