There are more than 600,000 people with epilepsy in the UK. Epilepsy Action believes that people with epilepsy must have equality of opportunity in their lives to allow them to achieve their full potential. Increasing the understanding and knowledge of epilepsy by encouraging research offers a way to help realise this goal.
In 2007 Epilepsy Action launched a new annual Research Grants Programme. As well as our existing bursaries, prizes, grants and studentship, we are now offering funding for research into causes and cures for epilepsy.
Dr Markus Reuber, a Consultant Neurologist and Chair of Epilepsy Action’s Research Committee, says
"The amount of money available for medical research is limited. Most research funding in the UK is given out without asking people who have to live with health problems how they think the money should be spent."
"This means that some of the research questions being answered are of greater interest to scientists than to people with medical problems such as epilepsy. ‘’
As a member-led organisation Epilepsy Action recognises how important it is that the research we fund is relevant to the lives of people living with epilepsy. Therefore, we are asking readers to think about becoming a member of the Epilepsy Action Research Network (EARN) and help decide which projects Epilepsy Action should fund.
Dr Reuber goes on to say that
‘’If people with epilepsy give a small amount of their time to help the Council of Epilepsy Action and the Council's research committee to make funding decision, they contribute in a small but very important way to the nature of research being carried out in this country."
"The Epilepsy Action Research Network will strengthen the voice people with epilepsy have in shaping decisions about the understanding and management of epilepsy in the future.’’
To be eligible to become a member of EARN, applicants should either have epilepsy themselves or be a family member/carer of a person with epilepsy. Further details and an Application Form are below.
What is the Epilepsy Action Research Network (EARN)?
EARN is a group of service users, that is people with epilepsy, carers and family members, who will help Epilepsy Action decide which research projects we should fund. EARN will also provide the service users’ point of view on research at Epilepsy Action.
Why should Epilepsy Action have a Research Network?
As a member led organisation, Epilepsy Action recognises how important it is that the research we fund is relevant to the lives of people living with epilepsy. Therefore, we think that service users should have a say in research which affects their lives. By doing this, we can help shift the focus from people with epilepsy as the subject of research to them taking an active part in the research process.
What will EARN members be asked to do?
You will be asked to read applications for research grants, studentships and other research awards. All applications will include a summary of the proposed research, which will be written in easily understandable language. You will then be asked to score and provide comments, and return these to us by a set date. Your views will form part of a wider assessment process which will help us decide which applications to fund.
How we will support you?
You will be given a handbook containing information about Epilepsy Action’s research policies, an overview of epilepsy research and how it is funded, and your role and responsibilities as a EARN member. There will be a dedicated member of staff to support you.
Who can become a member?
If you have personal experience of epilepsy, either as a person with epilepsy, or as a carer or family member, we would like you to consider applying to be a member of EARN.
What experience do I need to become a member?
Whatever your background and experience, you will be able to contribute. We don’t expect you to have any particular knowledge of epilepsy research; however, you should be willing to develop an understanding of the research process.
How do I apply?
- Complete the application form and return it to us at the address printed on it.
- Or complete the online application form
What happens next?
We will contact you to let you know if you have been accepted as a member of EARN.
Who can I contact for more information?
Margaret Rawnsley, Research Administration Office.
Telephone: 0113 210 8800 or email research@epilepsy.org.uk
In order to continue this important work, we need your help. Find out how you can make a regular or single donation to support research at Epilepsy Action
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