Whilst we believe that there are currently around 5,000 adults in the UK living with MND at any one time, the precise figure is not known as there is no single source of information to confirm it. The MND Register of England, Wales and Northern Ireland is set to find a more accurate figure of the true number of people living with the disease. This research study, funded by the MND Association with the support of The Betty Messenger Charitable Foundation and a family trust that wishes to remain anonymous, is jointly led by Professor Ammar Al-Chalabi at King’s College London and Professor Kevin Talbot at the University of Oxford.
Despite our increasing knowledge of the role that genetics plays in MND, there is strong evidence to suggest that MND is a complex disease that is triggered by a combination of genetic predisposition to the disease and exposure to external environmental influences such as occupational and lifestyle factors.Read More »
In April this year MND clinician-researchers Professors Martin Turner and Kevin Talbot at the University of Oxford organised an information day about the rare, inherited form of MND called ‘Families for the Treatment of Hereditary MND’ (FATHoM). The day was filmed and podcasts of the talks have recently become available. This article gives an overview of each talk and a link to the video.Read More »
The MND Association are funding Prof Kevin Talbot, Dr Ruxandra Dafinca (née Mutihac) and colleagues at the University of Oxford, who areinvestigating the link between the C9orf72 and TDP-43 genes in MND. We wrote about this research earlier in the year. As we’ve recently received their first year progress report we wanted to give you an update on what they’ve achieved.Read More »
In previous research Prof Kevin Talbot and colleagues at the University of Oxford began to understand more about how the C9orf72 gene defect causes human motor neurones to die. These studies were carried out using an impressive piece of lab technology, called induced pluripotent stem cell (iPSC) technology.
iPSC technology allows skin cells to be reprogrammed into stem cells, which are then directed to develop into motor neurones. Because they originated from people with MND, the newly created motor neurones will also be affected by the disease. Researchers can grow and study these cells in a dish in the laboratory.Read More »
In a previous research project funded by the MND Association, Prof Kevin Talbot and colleagues from the University of Oxford developed a new TDP-43 mouse model of MND. Compared to other mouse models of MND, this one accurately reflects the symptoms of the disease and levels of the TDP-43 protein as seen in humans.
This model of MND also shows how the TDP-43 protein becomes displaced from the nucleus (command centre of the cell) out into the cell cytoplasm, which makes up the cell body. Once TDP-43 has moved to the cytoplasm it is very difficult to shift, as it forms protein aggregates or clumps. It is thought that these clumps contribute to motor neurone cell death.
Prof Talbot’s latest project, together with researcher Dr David Gordon, is using cultured nerve cells from this new mouse model to screen a large library of drugs (our project reference: 831-791).
In the next two years, they will create an automated computerised imaging system that can detect the TDP-43 protein within the nerve cells (and see if it has moved out of the nucleus). With this imaging software the researchers aim to screen thousands of drug compounds in a short space of time, including some which have been approved for other illnesses. A ‘good’ drug will make TDP-43 stay in the correct location within the nerve cell’s nucleus.Read More »
The MND Register is a major five year project that aims to collect and store information about every person living with MND in England, Wales and Northern Ireland. It is led by world-class MND researchers Prof Ammar Al-Chalabi and Prof Kevin Talbot, at a cost of £400,500 (our grant reference: 926-794).
Why is it important?
MND is believed to affect 5,000 people in the UK at any one time, however the true figure is not known as there is currently no way of recording this information. The register aims to provide us with the true number of people living with MND in the UK.
The information collected will answer questions about how many people have MND in different areas, how the condition progresses, and how the disease can affect people. The register will connect people with MND to researchers, including those conducting clinical trials, and will provide valuable information to guide the future development of care services.
How will information be collected and used?
The register will be advertised nationally to all people with MND and related healthcare professionals. People with MND will be provided with detailed information about the register, and after some time for consideration, they can agree to take part. Their information will be recorded onto a secure database, either by a healthcare professional, or by the person with MND themselves through a register website (this will then be checked by a healthcare professional).Read More »
We’re pleased to announce that Dr Martin Turner has been awarded with the European Network for the Cure of ALS (ENCALS) Young Investigators Award 2012.
Dr Turner was awarded with the MRC/ MND Association Lady Edith Wolfson Clinical Research Fellowship in 2008 for his study to identify biomarkers in MND (called BioMOx). Since then, Dr Turner has already published two findings from his five-year disease marker study in the prestigious journals Neurology and Brain. Using advanced brain scanning technology, his study has identified a common pattern of nerve damage in the brains of MND patients. This holds the promise of a much-needed disease marker.
Talking about why he thinks the ENCALS award is so important, Dr Turner said:
“The ENCALS award marks a major highlight in my career.”
“I am passionate about MND, and feel privileged to help care for those living with the most challenging of diseases. To be recognised as having made a useful contribution to research as well, by international leaders in the field, means an enormous amount.
“It is 13 years since I began as a PhD student under Professor Nigel Leigh, whose ground-breaking ideas about brain changes in MND first sparked my interest. I was fortunate to meet Professor Kevin Talbot in 2003, and through his support and partnership I have been able to develop these ideas alongside leading brain imaging neuroscientists at Oxford University.
“I have never felt more sure that progress is accelerating in MND research, and I am pleased to be adding something to the wider global effort.”
Funding promising researchers
One of our research aims, is to develop the research workforce. Dr Turner talks more about how our funding has helped to develop his career:
“The Lady Edith Wolfson Clinical Research Fellowship scheme, uniquely linked to the Government-funded Medical Research Council through the MND Association, has been critical to my development as an MND researcher.
“These highly competitive 5-year Fellowships don’t simply provide the funding for the experimental studies, but crucially allow me to devote most of my time as a consultant neurologist solely to the care and research of MND patients. There is no simple way to specialise like this within the standard NHS framework, and such schemes are a vital way to help develop a strong UK academic neurology workforce in MND.”
Commenting on this story, our Director of Research Development, Dr Brian Dickie said “We’re delighted that one of our Lady Edith Wolfson Fellows has won this prestigious international award. The Fellowships were created to attract and retain the brightest and the best young clinicians to MND research and it is a fitting tribute to the knowledge, expertise and dedication that Dr Turner brings to this important field of MND research.”
Attending a three day scientific meeting is quite an intense experience, my brain has been working hard and by this morning, there were leaks of stress all over the place!
So in some ways it was quite a relief to walk into the final session of the meeting this afternoon, but in other ways quite sad too. Dr Bryan Traynor from the National Institute for Health in the USA gave a concise, accessible and comprehensive overview of the ground breaking discovery of the C9orf72. It was good to hear the detective story of how he and his colleagues came to actually make the discovery, the analogy of gradually narrowing down the area of DNA to look in from a city the size of Sydney, to a long street to eventually to a small one-road-through-not-very-googable village was much appreciated. (It also manage to increase the species of analogy animals mentioned at the meeting to cows – not one that I’d heard mentioned until then).
For me however, the highlight of this session was Prof Kevin Talbot’s concluding presentation on ‘Where to from here’. It was an articulate summary of what the whole MND research community has been told, discussed and digested over the three day conference and suggested some pointers of where we should go next.
That’s me done until I get back to home!
My grateful thanks to Kelly and Kate back in the office for all their preparatory work for these posts, it was a team effort.
Government cuts to research will have a knock on effect for the future, while cuts to care have an impact on those currently living with MND. Funding and promoting research to ensure a future rich in clinical, scientific and healthcare discoveries for MND is important to us, but we can’t achieve this on our own.
As part of MND Awareness week, a two-part series has been aired on ITV West Country Tonight, focusing on MND and the Government’s spending cuts on care and research. The show featured Prof Kevin Talbot, an MND Association funded expert on MND care and research based at the University of Oxford who was filmed at one of our recent Spring Conferences.
In the short film, Prof Talbot says that “When research funding is cut, one of the consequences is that the adventurous, exciting research doesn’t get funded. The ‘safe’ research, which really confirms what we already know tends gets funded. I think there’s a loss of innovation and adventure and that’s a real concern for different diseases such as MND.”
Funding ‘safe’ science may seem like a logical step when faced with difficult financial decisions, but without exciting and pioneering research, we simply won’t make any clear strides toward our vision of a world free of MND. Luckily, we are in a unique position to cherry pick and fund the very best research wherever it’s based in the UK and the world, research which will kick start exciting new areas of exploration into MND.
Speaking to us earlier this year, Prof Talbot told us that he considers the Association instrumental in the development of MND care and research in the UK, with an international influence too. But he sees his relationship with the Association as not simply about receiving care and research funding grants but crucial to his sense of feeling part of a wider research community dedicated to MND. “It helps to keep me connected to the important issues raised by the disease.”
We can’t achieve our vision on our own and so collaboration is a key component to ensuring that there will be a bountiful future for MND research. To do this, we are identifying and pursuing ways in which the profile of MND research can be raised, either directly through investment in research, or indirectly through influencing and campaigning the Government, related medical research agencies and pharmaceutical companies.
It is only through collaboration that we can we truly ensure a rich and successful future for MND research in the UK.