Symposium LIVE

Glasgow (Gl)

Organised by the MND Association, the International Symposium on ALS/MND is the largest medical and scientific conference specific to MND/ALS in the world. Held annually at venues around the world, this year’s 29th Symposium sees us returning to Glasgow on 7-9 December 2018, after 21 years.

Each Symposium is hosted by an ALS/MND Association from the home country, and this year’s hosts are MND Scotland, the leading charity in Scotland providing care and support to people affected by MND, as well as funding vital research into finding a cure.

Voted the friendliest city in the world, you’re guaranteed a warm welcome in Glasgow. From top class attractions, some of the best shopping outside of London in the UK, great food and drink and legendary nightlife, you are sure to have a trip to remember.

Find out more about Glasgow.

Platform presentations (Pp)

Those who would like to present at the Symposium have to submit an abstract – an overview of their research and findings – to be judged by the Programme Committee and rated ‘oral’, ‘poster’, ‘work in progress’, or ‘reject’. Out of the abstracts submitted some will be awarded platform (oral) presentations – the chance to present to an audience from the stage; others may be offered a poster – the chance to display their work in the form of a poster at a dedicated session.

You can read all the accepted abstracts online. All platform presentations have a code beginning with ‘C’ followed by a number (e.g. C50). This will help you locate the specific abstract mentioned throughout the periodic table topics.

Platform presentations are prestigious, and Glasgow will hear 109 talks over the three days. These talks will be split between three sessions; biomedical (A), clinical (B), and alternative mixed (C) session. Each session is organised by specific themes, such as genetics, clinical trials or neuroimaging. See the full programme for this year’s Symposium.

Alongside these presentations we also invite several plenary (keynote) speakers who are the world experts in their respective fields. Their talks complement the Symposium sessions by providing an overview of a variety of topics across the ALS/MND research and clinical management spectrum. See this year’s plenary speakers.

Poster sessions (Po)

Those who would like to present at the Symposium have to submit an abstract – an overview of their research and findings – to be judged by the Programme Committee and rated ‘oral’, ‘poster’, ‘work in progress’, or ‘reject’. Out of the abstracts submitted some will be awarded platform (oral) presentations – the chance to present to an audience from the stage; others may be offered a poster – the chance to display their work in the form of a poster at a dedicated session.

You can read all the accepted abstracts online. All poster presentations will have a code composed of three letters and a number (e.g. GEN-12, referring to poster number 12 in the Genetics and Genomics section). This will help you locate the specific abstract mentioned throughout the periodic table topics.

This year, 523 abstracts have been awarded poster presentations. These are split into biomedical and clinical posters. This allows presenters to create an A0 sized poster describing their work and gives them the opportunity to talk through this with colleagues at two poster sessions on Friday and Saturday.

Satellite meetings (Sm)

Whilst the main Symposium runs over three days, Friday to Sunday, there are also several satellite meetings in the days before as well as during the Symposium itself. The International Alliance of ALS/MND Associations organises meetings to serve the broader ALS/MND community: The Annual Alliance Meeting, on the 4-5 December and Allied Professionals Forum on the 5 December.

The Annual Alliance Meeting is attended by representatives of ALS/MND associations from around the world and provides the opportunity for these associations to meet and share knowledge of supporting people living with ALS/MND. It is also an opportunity for representatives from around the world to discuss developments and planning from their organisations, patient care and funding, and the role and activities of the Alliance and its Board of Directors.

The Allied Professionals Forum is for healthcare professionals, such as physiotherapists, nutritionists, speech-language therapists and more, who specialise in ALS/MND. It is an educational and training forum and offers healthcare professionals from around the world an opportunity to share ideas about good practice in the daily care management of people living with ALS/MND.

Networking & collaborations (Nc)

One of the main advantages of the Symposium is the opportunity to have the best and brightest scientists, researchers and clinicians in the world of MND research in one place at the same time. This gives attendees the opportunity to network with those who work in similar research as well as those working in different areas, allowing new collaborations and ideas to form.

These connections are vital in pushing forward research development – a simple chat waiting in the coffee queue can go a long way and start an important project that will lead to a key breakthrough.

Ask the experts (Ae)

Every year the International Alliance of MND/ALS Associations invite the host association to organise a free ‘Ask The Experts’ session. It is designed specifically for people living with MND and their caregivers to attend an afternoon of presentations by neurologists and researchers and then participate in a ‘question and answer’ session afterwards.

This year, we will hear from Professor Orla Hardiman (Trinity College Dublin, Ireland), Professor Dame Pamela Shaw (University of Sheffield, United Kingdom), and Dr Arpan Mehta (University of Edinburgh, United Kingdom).

This session is live-streamed on Facebook, and so anyone from around the world can attend and ask questions online.

Researchers (R)

The key to defeating MND lies in fostering strong collaborations between leading researchers and sharing new understanding of the disease as rapidly as possible – this is the main aim of the Symposium.

Researchers from all around the world arrive at the Symposium every year representing the energy and dynamism of the global MND research community. It is the largest medical and scientific conference specific to ALS/MND and is the premier event in the MND research calendar for discussion on the latest advances in research and clinical management. It gives delegates the opportunity to present their work, hear about progress, share knowledge and most importantly collaborate with their peers.

PhD students (Ph)

At the MND Association we are proud to fund a number of PhD studentships, ensuring that high-calibre graduates can undertake a PhD training in MND-related research. These students are the people who will be pushing research in the future so it’s vital that they have the support they need to be able to do this.

The Symposium is a fantastic and rare opportunity for students to make significant connections with others that share their passion for finding treatments and a cure for the disease. Over the three days they will be able to listen to presentations from the best in their field, network with peers who are working on similar or different areas and importantly promote their own research to others.

Two of our funded PhD students, Matthew Nolan, from the University of Oxford, who investigates the toxic TDP-43 protein in brain tissue, and Sarah Opie-Martin from King’s College London, who works on the MND Register and analyses epidemiological (environmental and lifestyle) data, shared a bit about their research and why attending the Symposium is important to them.

VIPs (Vi)

This year we are privileged that HRH The Princess Royal, the Royal Patron of the MND Association and MND Scotland, is attending the Opening Session of the Symposium. She is a regular supporter of both charities and the development of research in MND.

The Princess Royal attended the Symposium in 1997 – the last time it was held in Glasgow.

Healthcare professionals (Hp)

As well as researchers attending the Symposium a large number of clinicians (healthcare professionals) also attend the event to help expand their existing knowledge on MND. All fields are represented at the Symposium from respiratory experts to physiotherapists. It is a chance for them to hear innovative talks from experts in their field from nutritional support to quality of life and learn about new techniques and ways to improve their practice.

Helping to educate clinicians (Health and Social Care Professionals) is a priority for the MND Association as this will help those affected by MND have a better multi-disciplinary care plan, as well as a higher quality of life. As part of this education the Association runs conferences, study days and online learning for professionals on a range of topics. Find out more about these events for healthcare professionals.

People with MND (Pw)

People living with MND, their carers and families are at the heart of everything we do, and our reason for organising the Symposium every year. Whilst the event is aimed primarily at scientists and healthcare professional, there is an opportunity for people with MND to attend, via the Patient fellows programme managed by the ALS Therapeutic Development Institute (ALSTDI). This allows some people with MND to be funded to attend the Symposium and then share their experiences via an article or social media. Find out more about this year’s patient fellows Sunny, Keith and Bruce.

Everyone involved in MND research is extremely thankful to all those affected by the disease who take part in various research studies, helping us to get closer to finding the cure.

Genetics (Ge)

Around 5-10% of people with MND have a family history of the disease known as familial, or inherited, MND. This is caused by a mistake in the genetic code that holds the instructions for making every protein in our bodies. This mistake may be passed down from parent to child.

To date, about 70% of the genes known to cause inherited MND have been identified. The most common of these are SOD1, TARDBP, FUS and C9ORF72. Other extremely rare causative genes have also been identified. These discoveries represent major breakthroughs because they can provide important clues as to how motor neurones are damaged in MND and may advance our understanding of all types of the disease.

Lifestyle & environment (Le)

The causes of MND are still not fully understood. Around 90% of people with MND have a sporadic form of the disease – when the disease appears for no apparent reason and with no known familial link. Sporadic MND is thought be caused by a combination of genetic, environmental and lifestyle influences.

Exposure to these factors has been extensively studied. This is known as epidemiology. Epidemiological studies have identified possible links with prior exposure to mechanical and/or electrical trauma, military service, high levels of physical activity, agricultural chemicals and a variety of heavy metals. However, these are all only suspected contributory risk factors and the evidence from studies is often circumstantial or conflicting and offers no clear conclusions.

Understanding the causes and mechanisms of motor neurone degeneration is essential to the development of new treatments. Only by understanding what goes wrong in MND can scientists identify potential drug targets and other therapies.

Microbiome (Mi)

Recent studies have found that microbes living in our gut (microbiome) might have an effect on the rest of the body, including the immune and nervous systems. It is possible that the microbiome may be able to communicate with and affect the immune cells in the brain and spinal cord, called microglia.

Microglia have a naturally protective effect on motor neurones and the rest of the nervous system. Therefore, if the microbiome has the potential to affect the way microglia are behaving in the brain and motor neurones of people with MND (and other neurodegenerative diseases such as Parkinson’s and Alzheimer’s disease), the microbiome could become an important treatment target.

Researchers are currently trying to focus on the possible differences in the gut microbes of people with MND compared to people without the disease, in order to establish the possible connection between gut microbes and MND (and other neurodegenerative diseases).

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Nutrition (Nu)

Swallowing problems affect at least two-thirds of people with MND during their illness. This is due to a weakening of the muscles in the mouth and throat. If MND affects a person’s ability to swallow, it becomes harder for them to eat and drink. As a result, they are likely to experience dehydration and weight loss.

Adaptations to the way a person eats and drinks may be needed to ensure they get the nutrition and fluid their body needs. Some people with MND choose to have a gastrostomy – a surgical opening through the abdomen into the stomach. This allows tube feeding – a way of passing specially prepared fluid straight into the stomach.

Respiration (Re)

MND can affect the way a person breathes by weakening the muscles that control breathing. Although this cannot be reversed, there are treatments that can help reduce symptoms such as disturbed sleep, fatigue and anxiety, and enable the person to breathe more effectively.

When breathing becomes weaker a machine may be used to support breathing. This is known as assisted ventilation. There are two types of assisted ventilation: non-invasive ventilation, where a machine supports breathing by boosting the intake of normal air through a mask, and tracheostomy ventilation, where a tube is inserted into the windpipe through the front of the neck, which enables a ventilator to support breathing.

The use of ventilation may not be suitable for everyone. If appropriate, it may help to relieve breathing problems but will not stop the progress of the disease.

Psychological support (Ps)

This section talks openly about death and end of life decisions.

MND has a huge impact on the psychological and emotional welfare of people living with the disease and those around them who are affected by it, particularly when it comes to thinking about death and end of life decisions. It is normal to feel heightened emotions when facing end of life decisions and every individual will have a different set of circumstances, needs and preferences.

With support from health and social care professionals, difficult feelings usually become more manageable over time, and support is needed for both the person living with MND and those who care for them. Referral to a palliative care team or hospice may provide access to wider services to help with end of life decisions and manage the impact on the person with MND and those close to them.

Care management & support (Cm)

Aside from finding out the causes of the disease and ways to treat it, it is vital that people who are living with MND receive top-quality care. Current research is looking into ways of  improving their wellbeing and  managing disease symptoms including physiological changes, such as problems with breathing, weakening of postural muscles, cramps or joint stiffness.

When someone is diagnosed with MND, the changes affect not only the person with the disease but also those close to them. Becoming a carer for someone with MND can be very challenging and, over time, the level of care needed will increase – sometimes rapidly.

Supporting someone with MND can often feel emotionally overwhelming but there can be many positive emotions, such as satisfaction when a task or challenge is successfully completed, especially if this has involved both the carer and the person with MND. It is important that the carer takes time to look after their own needs, even if this feels impossible when facing the challenges of supporting someone with MND.

End of life (El)

Palliative care is of utmost importance in MND and focusing on managing symptoms and improving quality of life of people living with the disease is a priority of healthcare professionals. Because of the nature of the disease, it is important for those affected by MND to know about the symptoms they should expect as the disease progresses, and how best to manage them. Research is always ongoing to find out how best to manage symptoms and when to utilise life-sustaining measures.

The decision to end one’s life is a highly sensitive and difficult one both for the person considering this option and their family, as well as for clinicians who are approached about this. A person’s wish to end their life is an often-discussed topic, relevant in all countries, not only for MND but all terminal illness. The legality of euthanasia varies across the world. Currently, active euthanasia is legal in Canada, Colombia, the Netherlands and Luxembourg, with assisted suicide being legal in Switzerland, Germany, the Netherlands, and in eight US states.

The MND Association’s position on assisted suicide is neutral, you can read our policy statement here.

Cognition & behaviour (Cb)

Up to half of people with MND experience changes to how they think and behave, and these affect people in different ways. For some they will have little effect on daily life, while others will need significant day-to-day support. In a small number of cases, people with MND develop frontotemporal dementia (FTD).

People with MND may experience changes to their thinking and learning, language and communication, and behaviour and emotions. It may become more difficult for them to make and carry out plans, process information and solve problems. They may find it harder to recognise words when reading or writing, have difficulty spelling or find it hard to follow conversations. They might also begin to lack enthusiasm, find it difficult to manage emotions and behave inappropriately in social situations.

If a person is affected by FTD they will experience symptoms similar to those already described but with greater severity. With FTD, memory is not usually affected although it may appear that it is due to difficulties with concentration and taking in new information.

Quality of life (Ql)

The aim of hospice and palliative care is to give the best possible quality of life with a life-shortening illness. For maximum benefit to people with MND, this type of care is recommended from the point of diagnosis onward.

Palliative care refers to specialised care services that focus on quality of life and symptom control when an individual has an illness that can’t be cured. This includes practical help, medication to ease symptoms and support for the individual and their family. Palliative care isn’t just for end of life. It may be given earlier in a person’s illness in conjunction with other therapies treating the condition.

The Trajectories of Outcome in Neurological Conditions (TONiC) is the largest study in the UK examining the factors that influence quality of life in patients with neurological conditions, including MND. TONiC aims to have a significant positive impact on the lives of all people living with neurological conditions, regardless of symptoms, stage of illness, age or social status.

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Riluzole (Ri)

Riluzole is currently the only drug licensed in the UK for treating MND and is freely available to people who have been diagnosed, although it may not be suitable for everyone.

Riluzole works by suppressing glutamate activity, which is toxic in high concentrations. Glutamate is a chemical messenger in neurones that helps to transmit electrical impulses from one neurone to the next. Riluzole has other actions, too, that are not fully understood, and the observed benefits of the anti-glutamate effect have not yet been proven.

Riluzole is not a cure and does not reverse damage already caused to motor neurones. After 12-18 months of treatment, it may increase survival by an average of three months.

It comes in tablet or liquid form.

Edaravone (Ed)

Currently licensed in Japan, South Korea, USA and Canada, edaravone (commercially known as Radicut or Radicava) is the second drug approved to treat MND. Originally developed to prevent brain swelling after stroke, edaravone is believed to work as an anti-oxidant which helps remove damaging agents from the body which prevents or delays cell damage. Edaravone is currently awaiting a decision from the European Medicines Agency (EMA) regarding its marketing authorisation in Europe.

In clinical trials, edaravone has been shown to slow the progression of MND in a select group of people in the early stages of the disease, compared to those taking placebo, potentially helping them to preserve function longer. Long-term effectiveness of edaravone is not yet known. Edaravone is provided intravenously, with studies currently investigating the possibility of oral administration of the drug.

Clinical trials (Ct)

Clinical trials are research studies in human volunteers that determine whether potential treatments are safe and effective. Clinical trials are usually conducted in four progressive phases which check for safety and efficacy, establish the correct dosage and method of delivery and assess the drug’s ability to treat the condition it is designed for.

Clinical trials take many years to complete and are often extremely costly. At any stage the drug can be deemed too dangerous, or inefficient, to take into the next phase. To speed up the process, clinical trials are beginning to incorporate a biomarker element (a biological fingerprint) into their design. Monitoring levels of specific biomarkers during a trial will help establish if the drug or intervention being tested is having an effect on disease progression.

Researchers are also looking to ‘repurpose’ drugs that have failed to show effect for other diseases but have already been shown to be safe in humans, as potential treatments for MND.

Preclinical studies (Pc)

Before a drug can be tested in clinical trials, it first has to be examined in a lab to provide an insight into its mechanism (how it is likely to work in the body), safety, and preliminary effectiveness. These studies can be done in cells in a lab dish (in vitro), in animals (in vivo), or using computer modelling (in silico).

While there is only a limited number of clinical trials, there are many compounds currently in investigation that have the potential to be developed into MND treatments.

In general, only an extremely small proportion of compounds tested in pre-clinical studies get to the final drug approval stage, reflecting the rigorous and strict process assuring that only safe drugs of good quality are tested in trials and approved.

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Defining MND (De)

It has long been debated whether ALS/MND is one disease, or whether we should look at it as a collection of multiple conditions with similar symptoms and disease mechanisms. We are observing a large amount of variation in terms of speed of disease progression, length of survival, type of onset (bulbar or limb), absence/presence of frontotemporal dementia and its degree, as well as cause of the disease (e.g. involvement of specific genes).

This is especially important when investigating the effectiveness of a new drug in clinical trials, which might not work in the same way across all MND subgroups. A good example is the drug lithium, which was found not to be effective in treating MND, until the data re-analysis found that there was an improvement in people with a specific genetic variation (UNC13A).

Measures (Me)

In order for clinicians to diagnose MND and see how fast it progresses, there is a need for reliable measures to diagnose the disease faster and inform of drug effectiveness in clinical trials. While we wait for an established tissue biomarker, measures of clinical progression are currently the standard for monitoring disease progression.

The most widely used measure is the revised ALS Functional Rating Scale (ALSFRS-R), which is a 12-item clinical chart assessing patient’s functional abilities. Each item asks about specific abilities (such as speech, swallowing, dressing, or walking) and is rated on a 5-point scale from ‘0’ severe disability) to ‘4’ (normal functioning). A cumulative score gives a physician a considered view on the person’s disease status (where 48 marks meansnormal functioning).

Other measures focus on more specific symptoms of the disease, including motor neurone loss, reduced breathing ability, or assessment of behaviour and thinking abilities.

Biomarkers (Bi)

There is currently no diagnostic test for MND. Because of its relatively rare nature and non-specific symptoms, it is currently being diagnosed by an exclusion method, whereby clinicians have to rule out a whole range of other neurological and muscular conditions before giving a diagnosis of MND.

Finding a simple and pain-free test that would make this process easier and faster, would likely increase the effectiveness of existing and emerging treatments. These tests require searching for what is called a ‘biomarker’ – a signature of a biological change occurring in a specific disease (or a group of diseases). Some biomarkers have been identified for MND and are being tested to develop them into clinical tests.

Another reason to look for biomarkers is to keep track of the progression of the disease. Researchers are now testing various measures to see how biomarkers might change as the disease progresses, and whether these differ in people with rapid progression from those with a slower progression rate. However, due to the current lack of biomarkers, other measures of functional ability are used in clinics instead. While these are informative and provide us with a good estimate of the disease progression, they are not as accurate as biological markers.

Telemedicine & technology (Te)

Telemedicine is the remote exchange of data between an individual and a healthcare professional to assist in the diagnosis and management of a condition. The ultimate goals of using this technology are to increase access to care for people, decrease the frequency of clinical visits and reduce clinical costs.

For people with reduced mobility, telemedicine means no long commutes to short, but critical, assessments and no waiting around. From previous studies, people taking part in remote assessments expressed higher satisfaction with the overall care they were given and appreciated remaining in the comfort of their own homes.

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Disease mechanisms (Dm)

Motor neurones are highly specialised, extremely long, single cells that require high levels of co-ordinated energy supply to perform their very complex role in the body. It is likely that their death in MND is caused by ‘attacks’ from multiple sources. Researchers are working hard to defend motor neurones ‘from all sides’ and, to do this, they need to know the neurones’ weaknesses. They believe there are several ways in which motor neurones are under attack, a few of which are outlined below.

Firstly, proteins are moving out of the ‘control centre’ of the cell (the nucleus) and into the area around the nucleus (the cytoplasm) where they become toxic by clumping together. Secondly, the highly co-ordinated and essential transport system which carries essential cargo up and down the neurone may fail or work less efficiently. Thirdly, the neurones’ energy producing parts (think batteries) called mitochondria become unable to produce the large amount of energy needed to maintain the neurone itself. Finally, the support cells that should protect the neurones ‘go wrong’ and, instead of protecting, they start attacking the neurones.

If you look at a motor neurone affected by MND down the microscope, you see clumps of proteins (most often the TDP-43 protein) that have clumped together, and are in the wrong part of the neurone – the cytoplasm, instead of the central nucleus. Clues on how they are getting there are found by studying an inherited form of MND, for example the one caused by mutations in the C9ORF72 gene.

Neurones (Ne)

Neurones are cells that form the nervous system. This is split into two sections; central nervous system (CNS) – the brain and spinal cord, and peripheral nervous system (PNS) – branching out from the brain and spinal cord to the rest of the body. The nervous system is important in sending and receiving electrical messages from the brain to other organs and back.

There are different types of neurones in our bodies. Two of the most studied are motor neurones, sending signals to the muscles and leading to movement, and sensory neurones, responsible for perception of sensation. In MND, motor neurones are affected, while sensory neurones remain intact.

Motor neurones are large cells, consisting of a body with the main control centre (nucleus) and important organelles (such as mitochondria), dendrites (short projections that receive messages from preceding neurones), and the axon – a long projection that carries the incoming message from the dendrites, via the neuronal body to other neurones. Once the electrical signal gets to the end of the neuronal axon, it gets transmitted to another neurone in the form of chemicals passing like messengers in the small spaces (synapse) between two neurones.

In MND, it is suspected that the neuronal body as well as the axon might be affected, leading to degeneration of the motor neurones. Exactly how this happens is of course the subject of extensive investigation.

Support cells (Sc)

Aside from studying motor neurones directly, researchers are also looking at what happens when the cells that support motor neurones ‘go wrong’. Motor neurones are surrounded by support cells called glial cells which normally help protect motor neurones from damage and injury.

Two particular support cells have been studied the most in MND. These are called microglia and astrocytes. In MND, something happens to change these, leading them to attack the motor neurones instead of protecting them. How and why they do this, however, is less well understood.

Motor neurones will grow quite happily on their own in a dish in the lab. However, if astrocytes are grown in the same dish, or motor neurones are grown in liquid that has previously contained astrocytes, the motor neurones die. This suggests that astrocytes are passing something toxic onto the motor neurones.

Brain (Br)

The brain is the main control centre of our body and the nervous system. It is made up of billions of neurones which constantly communicate with each other in order to send messages in the form of electric signals from one part of the brain to another, as well as to communicate with the rest of the body. It controls our thinking, behaviour and the most basic physiological actions (such as breathing, seeing, smelling, or sleeping).

Different parts of the brain are, more or less, dedicated to specific functions, and specific regions of the brain are known to be affected in MND. Two of these regions include the motor cortex, responsible for planning and executing our voluntary movements, and the prefrontal cortex, involved in our thinking, personality and decision-making. The latter is mainly affected in people with MND who experience cognitive decline and behavioural changes.

Another way to look at the brain is to split it into grey and white matter. Grey matter (or the ‘cortex’) is the ‘bark’ of the brain or the outside of the brain, while white matter is the connections between the different parts of the brain and is generally hidden inside the grey matter.

Modelling MND (Mo)

In order to understand what goes wrong in MND, researchers need to study ‘something’ that, to all intents and purposes, mimics the biology of the disease. Ideally that ‘something’  has to be readily available, tangible, accessible, and available with a large enough number of samples so that any findings can be reproduced and confirmed.

There is currently no way to visualise all the complex interactions that happen in MND. For example, observing all of the biology of motor neurones in living people is  impossible, and so researchers use models of the disease.

There are generally three types of models that are used to research MND; in vitro, in vivo and in silico.

In vitro (meaning: ‘in the glass’) models use isolated cells in a lab dish, with the most widely used being induced pluripotent stem cells (iPSCs). These are skin cells taken from people with MND that are transformed into stem cells – cells with the potential to turn into different types of cells, including motor neurones.

In vivo (meaning: ‘within the living’) models include testing in living organisms, with the most widely used animals being zebrafish, fruitflies, worms or mice.

In silico (meaning “in silicon” as in silicon microchips) modelling, while not as common, is used to perform a computer simulation.

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