It’s that time of year again when we’re counting down to the annual International Symposium on ALS/MND! This year marks the 35th Symposium, the largest scientific and medical conference specific to ALS/MND, and throughout November we will be posting blogs to give you a preview of some of the research being presented at this year’s event. This global event gives the MND research community the chance to share their work, exchange knowledge and foster new collaborations.
This year, the Symposium is being held in Montreal, Canada from the 6th– 8th December and there is also a virtual option for attendance. The virtual attendance will allow delegates to watch select sessions live, with on demand access for all sessions available after the event (on demand access will also be available to those who attend in-person).
Last year the symposium was attended by over 1300 delegates from 44 different countries, including researchers, healthcare professionals and people from the wider MND community. We look forwarding to hosting this hugely important event and hope to see lots of you there! There’s still time to register if you haven’t already!
Each year we invite plenary speakers who are experts in their fields to provide an overview on topics across MND research and clinical practice. This year we have 20 plenary speakers talking about ALS/MND who will cover a wide range of topics from understanding more about the biology of MND to improving care and support for people with and affected by the disease. Over the next month, we will be taking a closer look at each of our ALS/MND plenary speakers this year and giving you a snapshot of the topics they will be discussing.
Day 1, Session 1: Opening Session
This year’s International Symposium on ALS/MND once again begins with the Stephen Hawking Memorial Lecture, which will be given by Professor Timothy Caulfield.
The Stephen Hawking Memorial Lecture plays such an important role in generating new ideas and collaborations for MND research. The researcher delivering this lecture works outside of the MND field and shares their work, in the hope that it helps to spark new ideas for MND research. The work of the speaker could help MND researchers to think outside the box and look at new ways to approach the challenges of the field.
Professor Timothy Caulfield was a Canada Research Chair in Health Law and Policy, is a professor in the Faculty of Law and the School of Public Health, and the Research Director of the Health Law Institute at the University of Alberta. Professor Caulfield specialises in debunking myths and assumptions about various aspects of healthcare, including alternative medicines, stem cell therapies and different diets. In his talk ‘Distinguishing Myth and Reality in Biomedical Research’, he will look at some of the health myths that have arisen from popular culture and discuss how mis-information about health can easily spread. He will suggest some ways to look at health information more critically and consider how we can prevent mis-information from spreading within communities.
Day 1, Session 2A: Genetics
Previous research has shown that changes in some genes can contribute to the development of MND. There are over 40 different genes that when changed have been linked to the disease so far and researchers are uncovering more that may be involved. People with MND often have very different experiences of the disease in terms of how quickly it progresses and what symptoms they have. One of the reasons for these differences can be due to the gene changes someone has. Research has suggested that the number of people with different gene changes may vary around the world, with some changes being more common within specific populations or cultural backgrounds than others.
Professor Janine Heckmann, from the University of Cape Town, and Dr Dilraj Singh Sokhi, from The Age Khan University Medical College of East Africa, will discuss a collaborative project called The ALS Africa Network. This project is a collaboration between researchers at sites in Nigeria, Kenya and South Africa to uncover more about how the disease presents in people of African origin. In their talk ‘Genetics and phenotypic heterogeneity of ALS/MND in Africa and people of African ancestry’, they will share how this network is helping to understand more about gene changes and disease presentation in African populations.
The research centres involved in the network have been collecting clinical information and DNA samples from people with MND in Africa to identify unique patterns and trends in the disease in those of African origin compared to European populations. Professor Heckmann and Dr Singh Sokhi will present the findings of the project so far and discuss some of the challenges of conducting this research. The talk will also highlight the importance of building research infrastructure in Africa to help improve access to clinical trials for people with MND in this continent.
Day 1, Session 4C: Motor Neuron Heterogeneity
MND often starts differently for people with the disease, meaning that where the disease starts in the body and which symptoms appear first varies between people. The site of onset of MND can be the upper motor neurons (nerve cells that send messages from the brain to the spinal cord), the lower motor neurons (nerve cells that pass the messages from the spinal cord to the muscles) or both. The disease spreads throughout the body from the point where it starts and will eventually affect both upper and lower motor neurons. However, it is still not known why the disease begins in different areas of the body for different people or exactly how MND spreads to other areas.
In his talk ‘Cellular vulnerability and disease spread in amyotrophic lateral sclerosis: Is it time to re-think upper and lower motor neurons?’, Professor John Ravits from the University of California at San Diego will discuss the importance of understanding where the disease begins and how it spreads throughout the brain and spinal cord. He will share how understanding and mapping the spread of disease could play a role in estimating individuals disease progression rates and prognoses. Professor Ravits will also discuss how the spread of toxic proteins between neurons has been previously linked to the spread of the disease between cells, offer reasons why this may not be a good way to measure disease spread and consider alternative approaches. He will share his thoughts on how we should look beyond the upper and motor neurons in MND and think about how the disease affects the whole central nervous system.
In the same session, Professor Hande Ozdinler will present the work of her team on ‘The importance of understanding the biology and pathology of upper motor neurons for building effective treatment strategies’. Professor Ozdinler from the Feinberg School of Medicine, Northwestern University will share how the team have created mouse models of MND where upper motor neurons appear fluorescent to allow them to be seen and studied more easily. This has helped them to shed more light on the underlying biology of MND in upper motor neurons and has led to the discovery of new treatment avenues based on improving the health and function of these neurons.
As a result of this work, Professor Ozdinler and her lab, in collaboration with others, have identified a potential treatment for MND called NU-9. NU-9 is thought to improve the health of upper motor neurons in MND by combating four different problems that upper motor neurons face in the disease. Professor Ozdinler will share how her team are working to discover biomarkers that can be used to identify people whose upper motor neurons are affected, give a good indication of whether the potential treatment is beneficial and tell us more about how the drug works in the body.
Stay informed
You can find out more about the International Symposium on ALS/MND on the website and view the full programme for this year’s event.
You can follow our research account on X where we post about research updates and will be posting throughout the Symposium using the hashtag #alsmndsymp.