Funding exciting research

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.

See part-two of the MND special on ITV West Country Tonight

To find out about all of the exciting research projects we fund, please see our ‘research we fund’ section of our website.

Earning their stripes – Zebrafish lead the way to learning more about MND

Zebrafish are increasingly becoming the organism of choice to study both early development and disease. But why are zebrafish important to MND research and can we really learn anything from a fish?

Shall I compare thee to a zebrafish?
Amazingly, we share many of our genes with our finned-friend the zebrafish which means that we really can compare what happens in zebrafish with what happens in humans.

With transparent embryos, zebrafish offer a unique view into the developing fish which means that researchers can study their neurones under a microscope – a feat that is not possible in humans or other mammals. We can also learn about how the disease progresses in fish by measuring their muscle strength by the amount they move, and by measuring their progress swimming against a current in a tube. 

Unlike us, zebrafish are also able to regenerate motor neurones if they become damaged. Interestingly – it is not that we do not have this capacity; we have extra signals that tell our motor neurones not to regenerate.

Zebrafish can therefore be used in MND research to gain a greater understanding of the processes that govern both the degeneration and regeneration of motor neurones to develop new and better treatments.

In the past 30 years, the number of scientific articles published about zebrafish has increased 465 fold. Not only does this show the increased use of this model, but also represents our collective increase in understanding more about human diseases and human development.

We’re fishing our way to a world free of MND
One of our newest projects, set to begin later this year, will be using a new zebrafish model of MND to screen over 2,000 potential new drugs to test for their effectiveness. This work will be carried out at the University of Sheffield by Dr Tennore Ramesh and Prof Pam Shaw.

This project will join the ranks of many other MND Association funded projects that are developing new models of MND to learn more about the causes of MND so that we can be in a better position to develop treatments.

We have also recently supported the development of new guidelines for the use of models in MND research in order to improve our confidence in pre-clinical (laboratory) studies and hopefully the success rate of MND clinical trials.

Zebrafish will not be able to provide us with all of the answers as to what causes the disease, or how we can treat it. But, when used in combination with a number of other exciting disease models, including chick embryos, flies and mice, we can push MND research to a new and exciting level.

Debunking claims of risk of MND and being born between April and August

This morning we read with interest an article in the Daily Mail newspaper which links MND to the month that you were born in. According to the article, being born between April and August means you are at a greater risk of developing MND. However, as far as we can tell, there is no scientific evidence to prove this theory.

The reason for this, according to the article, is that a mother’s level of exposure to sunlight in pregnancy is linked to a number of diseases and disorders. For MND at least, there is not any strong evidence to suggest that this is true.

The article does not state where they have found this information linking MND cases to being born between April and August, nor do they state where or how the research was conducted, or for how many people. In order to find out whether this statement was true, a large MND register would need to be used, which contained the birth month of every single person with MND in a given geographical location. Only then would they be able to conclude anything significant for that location. As there have already been a number of registers set up around the world, this would have already been identified, if it were true.

There is also no evidence that this research, with no name, no authors – apart from a casual mention of ‘the scientists’, has been published in a peer-reviewed scientific journal –the gold standard for publishing results from research studies.

If the answer to what causes MND were as ‘simple’ as being due to the month you were born in, we would have found it a long time ago.

To find the causes of MND, we’re currently funding a growing number of projects and with every new project we fund, we move one step closer to finding the answers.

Find out more about the causes of MND on our website.

Link to Daily Mail story titled: Does your month of birth hold key to future health?

Medical research should start and finish with the patient

Results of a recent poll suggest that the UK public is incredibly supportive of healthcare research within the NHS. These results will now be used as evidence that the developing Health and Social Care Bill should include statements about an obligation to fund and promote research within the NHS.

The results published today, state that a staggering 97% of people polled believe it is important for the NHS to support research into new treatments for patients and 92% believe it’s important for the NHS to support such research funded by charities.

990 adults were polled to find these figures, by one of the top polling agencies in the world, Ipsos MORI. They were commissioned by the Association of Medical Research Charities of which we are a member, Breast Cancer Campaign and the British Heart Foundation.

Commenting on the poll results, our director of research development, Dr Brian Dickie said that “The overwhelming support demonstrated in this poll indicates the importance that patients and public place on clinical research. Considerable advances are being made in understanding complex diseases such as motor neurone disease and the NHS will play a vital role in translating this new knowledge into better diagnostics and potential treatments. Medical research is no different from medical treatment in that it has to start and finish with the patient.”

 We’ve known for a long time that people affected by MND place research high on their priority list and one of our aims is to enable people with MND to participate in research should they so wish. In order for us to achieve this, we will need the right infrastructure available within the NHS to support healthcare research – studies that involve people such as clinical trials, biomarker studies etc.

We’re currently funding a number of healthcare studies within the NHS that involve people with MND altruistically giving blood samples, answering questionnaires and having brain scans to bring us closer to understanding the causes and developing new tools for a quicker diagnosis.

One study we’re currently funding is trying to identify a specific MND ‘fingerprint’, known as a biomarker to speed up the diagnosis of MND. The study is called Biomarkers in Oxford (BioMOx) and is led by Dr Martin Turner from the University of Oxford, from within the John Radcliffe Hospital in Oxford. People with MND play a crucial role in this project.

Speaking about his project, Dr Martin Turner said that: “My sort of research simply can’t be done in a different model, either in a test tube or in a culture dish. It has to be based in patients. We recognise that we are asking them to come and do things that don’t directly benefit them, we’re not giving them a treatment, but it helps us to find out more about the disease. I never cease to be humbled by how much time people with give and what they’ll have done towards our goal of finding better treatments.”

It is vital that the NHS continues to support healthcare research, and to ensure that diseases, such as MND are not forgotten.

The results from the poll are a clear indicator that healthcare research should lay at the heart of the NHS, and should be stated in the developing Health and Social Care Bill.

Making our voice heard

We will continue to make our voices heard to ensure that MND care and research can thrive in the future so that we can move closer to finding a better treatment, and speeding up the diagnosis of MND.

If you’re interested in reading more about our campaigning activities and want to get involved, then please visit our campaigns website : http://mndcampaigns.org

Read our press release

Read the AMRCs press release

Read about Dr Martin Turner’s Biomarker study