The global MND research community is once again preparing for one of the most anticipated events of the year—the 36th International Symposium on ALS/MND. This annual gathering is the largest scientific and medical conference dedicated solely to ALS/MND, offering an international platform to share work, exchange ideas, and spark new collaborations. Throughout November, we’ll be publishing a series of blog posts to highlight some of the exciting research being presented at this year’s Symposium.
Every year, the International Symposium on ALS/MND features a lineup of plenary speakers who are leading experts in their fields. This year, we’re excited to welcome 23 plenary speakers, each bringing their unique expertise to the global stage. Over the coming weeks, we’ll be shining a spotlight on each of these speakers and offering a glimpse into what they’ll be discussing at the Symposium.
This year, the Symposium will be held in San Diego, USA, from 5–7 December, with a virtual attendance option available. Virtual delegates will be able to join select sessions live and access all sessions on demand after the event—just like in-person attendees. We’re proud to once again bring this important event to the community and look forward to welcoming researchers, healthcare professionals and people from the wider MND community. Haven’t registered yet? There’s still time!
MND doesn’t just affect movement – it can also impact thinking and behaviour. Research has suggested that around a third of people with MND also develop changes to their thinking and learning, language and communication and behaviour and emotions. For some people with MND, these changes may be a sign of a type of dementia, known as frontotemporal dementia (FTD). In a similar way to how motor neurones break down in MND and cause loss of function in muscles, the damage to the nerve cells in FTD causes the connections between parts of the brain to break down. As more cells become damaged and die this can lead to symptoms. Research has also provided increasing evidence that MND and FTD are linked by shared biological changes in brain cells.
Day 2, Session 5B: Cognitive And Psychological Assessment And Support
Improving the diagnosis of FTD by detecting early signs of cognitive change
Prof Cathy Lomen-Hoerth, from the University of California San Francisco, will talk about the importance of recognising early signs of cognitive change in clinics. In her presentation, she will address the need to screen for FTD in people with MND and how this can lead to earlier detection and improved care and support. Professor Lomen-Hoerth will highlight a remote screening tool which can be used to screen people for FTD at home and explain why everyone with MND or FTD should be offered genetic testing, even if they don’t have a family history of the disease.
Finally, she will cover the importance of monitoring those at higher risk of developing MND/FTD due to having a gene change. People who have a gene change but don’t yet have symptoms could be monitored regularly to observe early signs of MND or FTD and track levels of biomarkers linked to the disease for changes, which might suggest the presence of MND/FTD before symptoms show. It is hoped that earlier identification of signs of FTD could lead to more timely care and support for people with FTD and their families.
Day 2, Session 7B: ALS-FTD pathogenesis
Investigating early biological changes in the brain in MND and FTD
Although MND and FTD are different diseases, they are linked by some of the biological changes that happen inside brain cells. One of these common biological changes happens to a protein called TDP-43. In both diseases, this protein becomes faulty and forms toxic clumps inside the cells, leading to damage. In order to find more effective therapies for both diseases, we need to understand more about these shared biological changes and the effects these have on the cells.
Dr William Seeley, from the University of California San Francisco, studies why these biological changes only happen in certain types of brain cells and in specific areas of the brain. His team use a mix of traditional laboratory science, computer models and brain imaging techniques to uncover more about the biological changes that happen in MND and FTD. His talk will highlight some of the methods and tools that can be used to detect the very early biological changes that could indicate the presence of these diseases. These tools could help to uncover some of the very early changes that may hold the key to understanding why certain brain cells and areas are more affected than others. Dr Seeley will discuss how these diseases affect the brain and share new research findings into what makes certain brain cells more vulnerable and what early biological changes might lead to the damage seen in both MND and FTD.
Day 3, Session 9C: Assistive Technology
For people with MND, technology can play an important role in helping to communicate with loved ones once they can no longer speak. Not only can technology help to give someone back their voice, but it can also provide a way to interact with the environment around them and help with some day-to-day tasks. Accessing this kind of technology may help to improve quality of life for people with MND and their carers and families.
Showcasing technologies that could help to improve quality of life
Mr Jarnail Chudge collaborates with the International Alliance of ALS/MND Associations to provide guidance on innovation and new technologies for people with MND. He has been working on a project to explore how technology can help people with MND participate in creative activities, such as art, music, and games, and if this can improve the quality of life for people with MND and their families and carers.
In his presentation Mr Chudge will share a newly designed tool called the Personal Needs Matrix. This tool is designed to help people with MND and their caregivers understand what kinds of support or activities might help them most, such as voice banking, nutritional support, creative activities, or spiritual development. He will discuss how the International Alliance of ALS/MND Associations are working to develop this tool into an AI based software to let people to explore their own situation and see what kinds of technologies are available to them. It will also be designed to provide academics and industry experts with a view of the current state of these technologies and identify areas where there are gaps that could be filled by developing new technology for people with MND.
Expanding access to assistive technology for people with MND
Mr James Schorey from Control Bionics, a company working in assistive technology, will share a new framework to help with the development of novel technology solutions for communication and ensure that everyone can access this technology. This new framework focuses on three aspects; Real-world access, Funding access and Technology access. Real world access refers to being able to communicate digitally through a single, reliable platform. Funding access means that this technology should be affordable and covered by health insurance or public healthcare systems. Technological access aims to ensure that tools keep up with the latest technology developments so they stay useful as MND progresses and physical abilities change. Mr Schorey will also highlight two technology products created by Control Bionics which have been developed with this framework in mind.
Transforming communication technology for people with MND
Mr Chris Ullrich from Cognixion, another company working in the assistive technology space, will talk about a technology product that they are testing, called Axon-R. The Axon-R platform uses a combination of brain-computer interface technology, augmented reality, and artificial intelligence (to personalise communication options) to help people communicate. It is also designed to connect to other everyday apps such as YouTube and WhatsApp, and to smart devices such as Alexa, allowing people to keep in touch with their family and friends and environment.
This system is currently being tested in up to seven people with MND across the US to see how effective it is at helping with communication in real-life situations. Participants have been testing Axon-R for up to 6 months to see how user-friendly the platform is. In his talk, Mr Ullrich will share some initial findings from this trial and discuss how these results have provided evidence for a further trial of the product. This larger trial plans to compare Axon-R to existing communication technology to see whether it is more effective at helping people communicate than the existing products.
Stay informed
You can find out more about the International Symposium on ALS/MND on the website and view the programme for this year’s event.
