BBRF is the ONLY UK charity dedicated to promoting and supporting research into the causes, treatment, prevention and cure of neurological conditions, at centres of excellence throughout the UK and further afield.
Neurological conditions are the most common cause of serious disability and result in loss of life, impaired quality of life and considerable suffering.
Through a progressive and inclusive programme of research we aim to save lives and improve the quality of life for over 10 million people in the UK and more than a billion worldwide, who have an injury or disorder of their nervous system (brain, spinal cord and nerves).
We fund research in the laboratory and in the clinic where the outcome of that research has the potential to advance our knowledge about neurological conditions leading to:
- Early and accurate diagnosis
- Effective treatments
- Improved care
- Identification of the causes
More people die from a neurological condition than from cancer. This key fact goes unrecognised because the many different neurological conditions have very different names and there is no common word or phrase linking them. The word ‘cancer’ for example, links the many different disorders where there is uncontrolled growth and division of cells in tissues and organs throughout the body e.g., lung cancer, bowel cancer, pancreatic cancer. There is no such word linking disorders of the nervous system. Consequently, people do not realise how prevalent neurological conditions are or that one in six of us has with a neurological condition that affects our daily life to a greater or lesser extent.
The lack of a word to link the many different neurological conditions and the lack of solidarity across the field as a whole is also the primary reason why calls for increased investment in research have been ‘neurological condition specific’ with variable outcomes. Neurological condition-specific organisations exist to represent the interests of people with that particular condition and to their credit some of the larger organisations have been very successful in so doing. However, the unintended consequence of a ‘condition-specific approach’ is that neurological services and investment in neurological research, have fared less well than they should have given the numbers of people affected by neurological conditions.
Neurological services are the Cinderella of the medical world, receiving less funding than other areas. The same is true for neurological research. Yet without adequate investment in research there can be no progress in the care and treatment of neurological patients nor can we establish the causes and find ways to prevent conditions from developing in those who may be at risk. Currently, medical progress for people with a neurological condition lags far behind the progress and benefits seen in other areas such as cancer and heart disease where there has been significant investment in research.
We cannot change what has been – that is history. But we can change the future for people with a neurological condition. This is what BBRF aims to do by promoting and supporting research across all neurological conditions.
However our approach to research is not dictated by the name of a neurological condition. Rather our approach is inclusive seeking relevance and application to as many conditions as possible. For example, by better understanding the underlying causes and mechanisms by which neurological conditions develop it will enable us to develop effective treatments with potential application to a wide range of conditions, all of whom may share certain early steps in their development; or by promoting and supporting large-scale studies into the identification and use of biomarkers (substances that are key indicators for particular conditions) in the blood, urine, cerebrospinal fluid or elsewhere, we may be able to develop diagnostic tests that will enable us to distinguish between a range of different neurological conditions that have overlapping symptoms at early stages in their respective developments. Knowledge transfer is key to speeding up progress in the field. What we learn in one area of neurology must be rapidly shared and its potential explored in relation to other areas e.g., research relating to the regeneration of peripheral nerves may have implications for the regeneration of tissue in the brain where there has been a significant loss of cells caused by degenerative diseases such as Alzheimer’s or Parkinson’s.
The underlying philosophy for our approach is that, as recent scientific findings are beginning to show, there is likely to be more that links the development and hence the potential treatment and cure of many neurological conditions than separates them.
How we fund research
Before we agree to fund a research project there are many questions that need to be answered including
- Is the work significant and relevant to people with a neurological condition?
- Is the research ‘neurological condition specific’ or does it have real potential across a wide range of conditions?
- Is the research original?
- Will it break new ground?
- Does the project unnecessarily repeat research already undertaken or underway elsewhere?
- Does the project have scientific credibility?
- Is the proposed work feasible?
- If the proposed research follows on from earlier work, does it necessitate further study?
- Are the funds requested to undertake the research realistic (i.e., is the proposed work over or under-priced)?
- Is the length of time required to undertake the work appropriate?
- Are there appropriate milestones for the work?
- What is the track record the research team?
- Is the work to be conducted in a suitable research environment?
- What is the potential impact of the research?
- How do the researchers propose to disseminate their research findings across the wider neurological research community?
- Where appropriate what steps do the researchers propose undertaking to progress translation of their work from the laboratory to the clinic?
- Where appropriate what steps do the researchers propose to get their research into practice?
It is the role of the Research Committee to consider these questions in order to help us make informed decisions about the research we fund.
When the Research Committee has considered a research proposal and taken a view as to whether or not it should be funded, its recommendation is put to the Board of Trustees.
The Board of Trustees has responsibility for research funding decisions taking into consideration the availability of funds. Moreover, it is the role of the Board, based on advice from the Research Committee, to ensure that the proposed work fits with our Research Strategy and therefore that all funded research contributes to delivery of the organisation’s aims and objectives (please see About Us).
Researchers seeking funding should in the first instance submit brief details (a couple of paragraphs) about the work they wish to undertake. If this is in an area that the charity wishes to pursue the applicant will be invited to submit an Outline application (2 pages) giving brief details of the proposed work and the cost.
Outline applications are considered by the Research Committee and a decision made as to whether the applicant(s) should be invited to submit a more detailed Full application. Applicants will normally be informed of the outcome of their Outline Application within six weeks of its receipt by us.
There is no deadline for receipt of Outline Applications which may be submitted at any time throughout the year.
Before a Full application is considered by the Research Committee, it is reviewed and assessed by between two and four independent experts (scientists or clinicians with expertise in the appropriate fields) from across the world. Each expert referee is required to submit a written report on the proposed research identifying its strengths and weaknesses together with a recommendation as to whether, in their expert opinion, the research should be funded. The advice of the external referees plays an important part in assisting the Research Committee to give full and proper consideration to each application and to reach a view as to whether or not we should fund the proposed research
Full applications for research projects are considered by The Board of Trustees at regular intervals throughout the year. Applicants are normally informed in writing about the outcome of their research proposal within two weeks of the Board meeting.
All applicants, whether successful or unsuccessful, will receive constructive feedback.
When a grant is awarded it is subject to strict terms and conditions. This includes the researcher having to submit a six-monthly progress report and a final report setting out the project’s progress against the objectives as specified in the original research proposal. Any problems encountered and/or any proposed deviation in the work from that originally proposed must be identified. The Research Committee evaluates the reports and subject to satisfactory progress, will recommend to the Board of Trustees that the charity continues to fund the work. In the event that progress is unsatisfactory the Research Committee will advise the Board accordingly with a recommendation that funding is terminated.
What is a cure?
The dictionary definition of a ‘cure’ is: ‘to get rid of an ailment; to restore to health or good condition’. However, the word ‘cure’ can mean different things to different people with different neurological conditions.
Taken at its extreme, this would mean eliminating a disorder by fixing the problem at source (stopping the disease process) along with the reversal of any damage caused by the disorder (by the regeneration or repair of tissues). At present there are no such cures but ultimately this is the desired goal for all neurological conditions. In their absence the next best goal is to develop effective treatments that will control a disorder so that its impact on an individual is as close to zero as possible thereby freeing the individual from the disorder though not eliminating it. This would involve alleviation of the symptoms, and in the case of a progressive neurological disease, stopping the disease from getting worse. The earlier in the disease process such treatments are started the less impact the disease will have had (which is why early and accurate diagnosis is one of our research aims). Understanding what causes a neurological condition may give us opportunities to prevent it from developing in those who may be at risk. As such, it might be possible for some people to take action to avoid known ‘triggers’, thereby providing them with a ‘cure’.
Underlying all neurological conditions is the desire to achieve ‘freedom from the deleterious impact that injury or disorders of the brain, spinal cord and nerves have on peoples lives, however that may be achieved. That is the essence of a ‘cure’.
BBRF receives no money from government and must raise all of its money for research through fundraising activities and public donations.
If you would like to help us to fund vital research please Get Involved.