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Campaign Supporters' Group

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Epilepsy Action actively campaigns to improve epilepsy services and raise awareness of the condition. We would not be able to run our campaigns so successfully without the involvement of our supporters. The Campaign Supporters’ Group brings together people interested in taking part in our campaigns.

  

What are the aims of the group?

  • To bring together people who are interested in actively take part in Epilepsy Action campaigns .
  • To campaign for improvements in the provision of epilepsy services.
  • To keep people updated about Epilepsy Action’s campaigns.
  • To offer support to people who want to develop local campaigns.

  

What will joining the group involve?

You do not need to be an experienced campaigner and you do not need to have a lot of spare time to get involved in our campaigns. If there are issues that you want to campaign on locally then we can provide advice and information to help you.

The more people involved in campaigning, the greater the opportunity to influence and improve the quality of life for people with epilepsy.

Joining the group means that you will:

  • Receive a regular newsletter giving updates on Epilepsy Action’s current campaigns and information about how you can take part.
  • Receive alerts when a campaign evolves quickly and we would like to ask you to take some kind of action. The action that we ask you to take may range from asking you to get in touch with local MP to asking you to write to your local health authority.
  • Have access to support and advice about carrying out your own campaigning activities.

  

How do I join the group?

Join the Campaign Supporters’ Group.

Once you have joined the group you will start to receive the regular newsletter and details of how you can take part in Epilepsy Action’s campaigns.

You can also sign up to the Campaign Supporters' Group when you join Epilepsy Action as a member.

If you would like further information about the Campaign Supporters' Group please contact Aimee Bowen on 0113 2108866 or email abowen@epilepsy.org.uk.

 

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Comments

I am 64 years old and only recently suffered my first seizure prior to that I had a very healthy life. I was always aware of epilepsy but never the detail of how seriously it affected peoples lives both the sufferer and that of their families.

Since my diagnosis I have been aware that the subject is never discussed on popular prime time television i.e Children in need the One show and Panorama to name just a few. There are no characters with epilepsy in soap opera such as East Enders etc and rarely are there articles in the popular press. It strikes me that we can lobby members of parliment intensively but until it is an illness that the general public are aware of nothing will get done.

Have I got it wrong ? do we need a campaign to target the popular mass media. If there is such a campaign I can only appologise to those who are doing battle with the media

Submitted by Terry Sullivan on 24 November, 2009 - 12:07.

Thank you for your message – I completely agree that epilepsy needs a higher public profile and Epilepsy Action is doing what it can to achieve this. We have an extremely busy press office and achieve lots of media coverage in different kinds of media. Last year, we did over 100 TV and radio interviews and appeared in over 1,000 newspaper articles, reaching around 38 million people.

There have been soap characters with epilepsy in the past. A few years ago a character called Steph Dean in Hollyoaks developed epilepsy after a brain injury and we worked with the programme makers at the time on the storyline. However, it is important to remember that a soap character might not be the best way to raise awareness of the condition. Programme makers would probably want the storyline to be as dramatic as possible and would likely portray the most stereotypical image of epilepsy. We work hard to break down myths surrounding epilepsy and avoid sensationalised, stereotypical representations of the condition.

I think one thing that would really help us raise awareness would be for a celebrity with epilepsy to come forward and talk about it. We have fantastic celebrity support for fundraising events, including National Doodle Day and National Tea Break, but celebrities with epilepsy can be reluctant to talk about their condition. Many celebrities with epilepsy choose to keep quiet for the same reasons as other people with epilepsy – stigma being a good example.

We are always looking for media volunteers and at the moment I am particularly looking for adults like you who have developed epilepsy later in life as we are planning a campaign on this issue for next year. If you would be happy to tell the media your story to help raise awareness of epilepsy please fill in our online form at http://www.epilepsy.org.uk/press/mediavolunteer or write to Lucy Olafsson at New Anstey House.

Aimee Gee
PR & Campaigns manager
Epilespy Action

Submitted by Aimee@epilepsyaction on 8 December, 2009 - 11:01.