Over 100 talks were given at this month’s International Symposium on ALS/MND in Dublin. There were also over 450 posters of research being presented too. Time in the conference programme was allocated on Wednesday and Thursday evening (day 1 and day 2 of the 3 day conference) to visit the posters – you might think that scheduled at the end of the day they would be less well attended – but not a bit of it! It was an extremely loud and buzzy part of the conference.
As well as all the networking, debate and new information being shared, the International Symposium on ALS/MND is also a time to celebrate achievements by the giving of awards. The Biomedical and Clinical poster prizes are an opportunity to recognise and celebrate the excellent research and clinical practice being conducted by those early in their career.
Now in its fourth year we hope that the poster prizes will help give the winners career a boost, and give them the encouragement and motivation to continue in MND/ALS research. This year the Panel selected an international group of winners: Dr Albert Lee from Australia and Elsa Tremblay from Canada were jointly awarded the Biomedical poster prize and Ruben van Eijk from The Netherlands won the Clinical poster prize. Each winner received a certificate and a glass engraved paperweight.
The prize winning research ranged from understanding the consequences of a newly discovered gene mutation linked to MND, to why the junction between nerves and muscles is one of the earliest signs of motor neurone damage, to a new statistical analysis to make clinical trials quicker and more efficient. Below I’ve explained more about the research that the winners presented. Continue reading →
What causes MND is the question that so many of us want to know. For the majority of people with MND we know that it is caused by a combination of many environmental, genetic and lifestyle factors, that gradually tip the balance towards someone developing MND. In the very first talk of the 2016 International Symposium on ALS/MND Joel Vermeulen from The Institute of Risk Assessment Sciences at Utrecht University in The Netherlands gave us an update on research underway to understand the environmental and lifestyle contributions to why people develop MND. Continue reading →
I firmly believe that the quality of research is only as good as the researcher doing it, which is why the MND Association places a lot of emphasis on providing opportunities to attract, train and retain the brightest and best investigators in the UK and Ireland to develop their careers in MND research. These range from our ‘entry level’ PhD Studentships through to our successful Clinical Fellowships (funded jointly with MRC) and our more recent Non-Clinical Fellowship programme, offering opportunities to outstanding young researchers at a variety of career stages.
Today marks the beginning of the next year in MND research around the world, or at least it certainly feels like that! It is the first day of the three day, international MND research conference that the MND Association of England, Wales and Northern Ireland is immensely proud to organise. Continue reading →
This year the Symposium session on clinical trials looked at three drugs and one therapy. Dr Brian Dickie has posted a separate blog on one of these drug treatments – Edaravone.
A summary of the results from the drugs and treatments discussed is below. More information on each of them in detail is later on in this blog.
Ibudilast: This drug was safe and well tolerated in those who were not using non-invasive ventilation. However, these are results from an early stage trial so more research is needed to establish possible long-term benefit.
Methylcobalamin (Vitamin B12 injections): If this treatment is given early (within 12 months of diagnosis) then it showed an effect at increasing survival in a small sub-group of those taking part in the trial. This effect was not seen when the treatment was given further on from diagnosis.
Stem cell therapy: This small, early Phase 1/2 trial was testing the safety of bone-marrow derived stem cell injections into the spinal cord. The researchers found this treatment had no major side effects. Further studies are needed to evaluate the effectiveness and safety of this treatment over the long-term.
Bar a few bacteria usually found hitching a ride on our dental plaque and digestive system, every living cell in the human body needs oxygen. Some cells need more oxygen that others, dependent on much energy they need to produce to function. Neurones are particularly active cells (the brain uses a fifth of all the oxygen consumed by the human body) and motor neurons are amongst the most energy hungry of all.
Unfortunately, the process of producing cellular energy isn’t 100% efficient: a small but constant amount of waste products called free radicals (yep, those things that the beauty product industry bangs on about) can build up in the cells. If not kept in check, they can start to wreak havoc within the cell.
Our cells have quite effective ways of dealing with free radicals, but these ‘cellular defences’ become less and less efficient with age. As we age, our energy production processes lose efficiency, causing a ‘double-whammy’ of not only more free radicals being produced, but also less effective ways of dealing with them. When neurones are damaged, as happens with neurodegenerative diseases, then everything gets exacerbated even further, leading to a vicious cycle of events. Continue reading →
Mechanical ventilation for people with motor neurone disease (MND) is a sensitive and little discussed topic. Yesterday’s respiratory management session of the International Symposium on ALS/ MND began with several interesting and thought provoking presentations on the subject. Pia Dryer from Aarhus University Hospital in Denmark presented the results of a review of their respiratory service over 17 years, including a discussion of invasive ventilation. Dr Mike Davies is a respiratory consultant at the Papworth Hospital in Cambridge in the UK, where he and his colleagues run a weaning service supporting people to come off invasive ventilation.
Choosing ventilation, or not
Summary of respiratory choices of people with MND in Denmark
Over 400 people with MND had been treated at the Home Mechanical Ventilation service since its inception in 1998, Pia Dryer explained at the beginning of her talk. During the discussions in clinic people had the choice about the options available for managing their breathing symptoms, some chose no ventilation, others non-invasive ventilation (NIV). From NIV some then progressed to invasive ventilation or tracheostomy, and finally some chose to go straight to invasive ventilation. People with MND had the choice of all of these options, 90 of them chose either NIV and then invasive ventilation or invasive ventilation first without NIV. The talk was really brought to life by showing clips of Birger Bergman Jeppesens the star of a number of films on YouTube. He was the first patient to ask for invasive ventilation at the Aarhus clinic. Dr Dreyer went on to talk about the legal and ethical aspects of withdrawing ventilation from people with MND at the end of life, a topic that was discussed in more depth later in the session. Continue reading →
Different ways to support breathing were the main focus of the second clinical session on day two of the Symposium. Researchers from two MND Association funded studies presented their work looking at diaphragm pacing and also the withdrawal of ventilation support.
The NeuRx diaphragm pacing system (DPS) is a device developed to aid breathing by stimulating the large muscle that helps you to breathe – the diaphragm.
In 2011, the Food and Drug Agency (FDA) in the USA approved NeurRx DPS as a treatment for respiratory failure in motor neurone disease (MND). The treatment was not required to go through the series of clinical trials that is needed for a new drug. The FDA approved it on the basis of one small study because at the time the probable benefit to health outweighed the risk of using it.
Due to this lack of clinical evidence, this prompted further research in the USA and Europe to test its effectiveness on symptom management and survival. Continue reading →
Karen Pearce, the MND Association’s Director of Care, blogs about presenting the Association’s wheelchair project at the Allied Professionals Forum, which happened prior to the International Symposium on ALS/MND.
At the Allied Professionals Forum I had the opportunity to present our wheelchair project, particularly looking at anticipating future needs and the powered neuro wheelchair. The presentation seemed to go well, however there were no questions at the end. In my mind this could mean a few things, either what I had said wasn’t interesting, or it wasn’t relevant or maybe I had covered everything people wanted to know. This felt unlikely to me.
Thankfully after the presentation a few people approached me, a couple to ask for our evidence so they could influence the people who provided powered wheelchairs in their country. Another person asked about how a feature of the powered neuro wheelchair could possibly be used if the wheelchair was tilted back. Fortunately she uses wheelchairs from one of the manufacturers we work with. Following my talk she is going to ask them for a demonstration model for her to try – a fantastic example of sharing work that will now hopefully support across many countries. Continue reading →