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 2C: Presymptomatic Detection And Early Diagnosis
Currently in the UK it takes an average of a year for someone to receive a diagnosis of MND from the time when symptoms first begin. This is because MND is difficult to diagnose and there is no one test that can be used to tell whether someone has the disease. Clinicians often have to rule out other diseases with similar symptoms before they can tell that someone has MND. This is why there is a large focus in the research world on new ways to diagnose the disease so that people find out sooner and can access support, treatments and clinical trials much earlier in the disease process.
As part of this, research studies have also been investigating very early signs of the disease that people may have before symptoms even begin (pre-symptomatic disease). These studies have been monitoring people who have gene changes linked to MND which mean that they have a higher risk of developing it and have helped to increase our understanding of the biological changes that occur in the very early stages of disease. If we can shed more light on the early stages of the disease and predict when someone will develop MND, it may be possible to give treatment which could delay or prevent the onset of symptoms.
This session has five talks and all speakers are plenary speakers as they are all experts in their respective fields. After the set of talks, there will be a panel discussion about the topic to encourage the audience to ask questions and think more widely about how diagnosis can be improved. It is hoped that this session will generate new ideas and ways to detect MND and Frontotemporal Dementia (FTD) before symptoms appear and enable people to receive support, interventions and a diagnosis earlier than they are currently.
Beginning this session is Dr Michael Benatar, from the University of Miami, who will give a talk on ‘Pre-symptomatic ALS/FTD: from biology to prevention?’. Dr Benatar will discuss his work on pre-symptomatic disease and the importance of being able to identify and understand this stage. Previous work from studies of people at increased genetic risk of developing ALS and FTD, by Dr Benatar and others, has provided evidence that stages of the diseases exist before symptoms appear. One of these stages is based on early signs of disease activity, called mild motor impairments, which suggest that someone will go on to develop MND. Other early signs are mild cognitive and mild behavioural impairments which may be early indicators of FTD. In this talk, he will share more about these signs that could be very early indicators of disease development and discuss the implications of recognising these signs on early interventions and diagnoses.
Our next speaker, Cassandra Haddad, will provide a unique perspective in her talk on ‘Community support information requirements for ALS gene carriers’ as she has a personal connection to genetic ALS. Cassandra is a nurse practitioner but also carries an SOD1 gene change linked to ALS. She will discuss why it is essential to engage the community of unaffected carriers in research into pre-symptomatic ALS/FTD and disease prevention, whilst also making it easy for them to participate and offering support. In her talk, she will highlight how important it is to consider what motivates people to get involved in research, the barriers to people participating and the support they are offered throughout the process. Taking part in research about pre-symptomatic disease often relies upon people getting genetic testing to know that they have a gene change which puts them at an increased risk of developing ALS/FTD. Cassandra will also speak about the psychological implications of knowing this information and taking part in research, such as being tested for pre-symptomatic biomarkers and the possibility of finding early signs of the disease.
Dr Stephanie Fradette from Biogen will give the next talk on ‘Design of preventative trials in ALS’ where she will highlight how research into pre-symptomatic changes has helped in designing a clinical trial looking at the effects of early intervention in gene carriers. She will share more about the ATLAS trial of a gene therapy , called Tofersen, for those with an SOD1 gene change. The ATLAS trial is a phase 3 trial where people who have an SOD1 gene change, but don’t have any symptoms, are monitored for early signs of disease. The early sign of disease being observed in this study is a biomarker called neurofilament light chain (NfL), which has been shown to rise before symptoms appear. Once people have raised levels of neurofilament but before they show symptoms, they will be randomly assigned to receive either a dummy drug or Tofersen. Dr Fradette will discuss how this trial could help to shed light on whether early intervention may be able to delay or prevent the onset of disease.
Professor Ronald Postuma from the Montreal Neurological Institute Hospital will highlight what we can learn from studying pre-symptomatic stages of other neurological diseases. His talk, ‘Pre-motor changes in Parkinson’s Disease (PD): lessons for ALS and FTD’, will discuss two models that can be used in research to measure pre-symptomatic stages and ultimately diagnose the disease. These models both take into account biological (biomarkers and gene changes), clinical (symptoms) and functional (loss of mobility) signs of PD to determine where someone sits on a scale that ranges from healthy to having the disease. In PD, these models are being used to advance research into finding new treatments which target the early biology of the disease that might occur before symptoms begin. Professor Postuma will share some lessons that we can learn from these models and ideas for creating similar models for ALS/FTD research.
The final talk in the session, ‘FTD Detection and diagnosis’ will be from Professor Elizabeth Finger at the Brain and Mind Institute in Canada. Professor Finger will highlight the importance of measuring clinical and biological signs in people who are pre-symptomatic and at genetically at higher risk of developing disease. She will consider how this could be applied to everyone who is pre-symptomatic but has a gene change linked to ALS/FTD. Previous research has shown that people with a gene change in the C9orf72 gene also have changes in levels of NfL and certain regions of their brains before symptoms of ALS/FTD begin. This suggests that there may be common markers of disease activity between genetic forms of ALS/FTD which appear before symptoms. Professor Finger will also discuss how the ALS and FTD research communities could work together to look into whether these diseases can be prevented in the future for people with gene changes who are at higher risk of developing them.
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.
