Today we announced the results of an exciting new funding partnership with Marie Curie. Together we will be co-funding three research grants that help to answer some questions that people with MND identified as a priority for end of life care research. This is the first time that the MND Association and Marie Curie have worked together with a joint funding call. Each organisation has committed an equal amount of money to the funding of these projects, a total cost of £450,000 over the duration of the projects.
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
Two sets of MND genetic results were published yesterday. One of these results was about the importance of a new gene called NEK1. The second highlighted the role of gene C21orf2 in MND – we wrote an article about this yesterday. Both sets of results were published in the prestigious journal Nature Genetics.
What are the results and what do they tell us?
Researchers found that variations in the NEK1 gene contribute to why people develop the rare, inherited form of MND. Variations in the NEK1 gene were also found to be one of the many factors that tip the balance towards why people with no family history develop MND.
NEK1 has many jobs within motor neurones including helping keeping their shape and keeping the transport system open. Future research will tell us how we can use this new finding to target drugs to stop MND. Continue reading
Today some exciting news about the genetics of MND was published in the scientific journal Nature Genetics. The results come in two research papers published in the same issue of the journal.
This blog post discusses the results of the first of these papers for which King’s College London based Professor Ammar Al-Chalabi was one of the leading researchers. A post on the second paper will follow later.
Here we’ve given an overview of what the researchers have found, what it means for people with MND and how the analysis was conducted. You can read a more detailed explanation of the research results from the King’s press release. Continue reading
During MND Awareness Month (1-30 June), we will be publishing a new post each day. Our ‘Project a Day’ series will celebrate the whole range of areas in which the MND Association funds research.
Thanks to the generous donations of our supporters, we currently fund over 80 research projects, across five themes:
- Causes: These projects aim to understand what causes the motor neurones to die. This is essential to allow the development of treatments.
- Models of MND: One way in which to understand the function of a gene and how this goes wrong in disease is to use a model. These projects aim to develop new and better models of MND to understand the causes of MND.
- Healthcare: These projects aim to increase the quality of life of people living with MND, as well as improving care. These projects have a direct impact on people living with MND here and now.
- Markers of disease progression: There is currently no diagnostic test for MND and no specific ‘biomarker’ to monitor the disease. These projects aim to find a marker of disease progression to speed up diagnosis, prognosis and disease monitoring of MND.
- Developing treatments: These projects aim to test the effectiveness of potential treatments, from laboratory stage to the clinical trial environment.
On Sunday 8 May there’s a chance to see ( and possibly take part in) an interactive dance performance about MND research called ‘Action Potential’. It’s taking place in central London as part of Imperial College’s Science Festival.
The name of the performance – ‘Action Potential’ – is taken from the scientific name for the movement of an electrical impulse down a nerve cell (motor neurone). It also fits the active nature of the dancers. It is funded by a Wellcome Trust grant.
What will the performance be like?
Dancers and martial arts performers will delve inside a motor neurone to explain how scientists think they work. This will include a high energy opening dance sequence, and a fun interactive second section for all the family to take part in explaining how the brain communicates with our muscles. The third section will be an emotive finale illustrating the relevance of this research in the battle against MND.
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
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
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
The fantastic news that Patrick Joyce and his co-inventors have won the 2015 Hackaday Prize for their ‘Eyedrivomatic’ invention is one of a number of research prizes announced this autumn.
At the beginning of November Prof Martin Turner was presented with the Graham Bull Prize for Clinical Science by the Royal College of Physicians (RCP). The Prize is awarded to a member of the RCP under the age of 45 who has made a major contribution to clinical science.
The winner of the Graham Bull Prize is also invited to deliver the prestigious Goulstonian Lecture, an annual lecture given by a young RCP member that dates back to 1635 and the list of previous speakers reads as a ‘Who’s Who’ of the history of British Medicine!
Those of you who know Martin, in particular the many participants who volunteer for his BioMOx research programme will be pleased to see his new title: he was awarded the title of Professor by the University of Oxford in July this year. Aren’t Professors getting younger looking these days…! Continue reading
Today an exciting announcement was made about three organisations working together to increase our knowledge on the best way to provide palliative and end of life care. The MND Association and the Chief Scientists Office in Scotland (CSO) will be working with Marie Curie on a new research call.
In addition to a £1million funding pot from Marie Curie, the CSO will contribute £225,000 of funding and MND Association will contribute up to £200,000. Scientists, clinicians or healthcare workers are invited to submit their outline applications by 14 January 2016.
Acting on what you told us
The areas that we’d like to fund are based on a project that was completed in January 2015, known as the ‘Palliative and End of Life Care Priority Setting Partnership’, shortened to ‘PeolcPSP’. At the core of this 18 month project were responses to an online survey, where many people shared their questions or experiences about the end of life. We were pleased that many people affected by MND took part.
From those survey responses, we worked out that there were a massive 83 topics that would be suitable for a research study (and where no conclusive studies had already been conducted). All of these are important topics to investigate, so we’re hoping that researchers with an interest in working in any of these topics will think about submitting an application for funding.
So what kind of topics are included?
The topics for the call are the list of 83 questions from this earlier palliative care research study (the PeolcPSP study mentioned above). It is too long a list to include in this post, but the overarching themes include how (best to):
- communicate topics on palliative and end of life care
- manage symptoms and medications
- provide support for carers and families
- provide support in bereavement
- provide support for staff (and staff training)
- co-ordinate care services
- provide access to services
- decide where the care should be and what type of care
Where can I find out more?