The Joint Epilepsy Council of the U.K. and Ireland
Registered Charity No. 1104313
PO Box 186, Leeds LS20 8WY
E: sharon.jec@btconnect.com
Contact: Sharon Wood
General Secretary
Tel:01943 871852

Working to meet the needs of people with epilepsy and their families

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Joint Epilepsy Council
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JEC Member Activities

Many JEC member organisations are planning their own awareness and fund-raising activities during National Epilepsy Week:

   

The David Lewis Centre, Alderley Edge is holding a bag packing event at M&S, Handford Dean on the 16th May to help raise profile in the local community.  25 people are running in the Great Manchester run in aid of the David Lewis Centre on the 17th May and on the 21st May, the centre is running a supporter event offering a chance to look round the centre, meet staff and residents and find out more about their work.  Please contact Helen Archibald, Fundraising Manager at the David Lewis Centre on Helena@davidlewis.org.uk or check out their website if you would like further information.

Epilepsy HERE, Herne Bay is planning to arrange information and collection days at local supermarkets.  Further information can be obtained from Roger Kendall – Rmekendall5@aol.com.

Epilepsy Scotland have a full NEW programme planned, some of which precedes the actual week:

1 May –             Information event in Ardrossan, Ayrshire

1 May –             Media work/stories to promote National Epilepsy Week

1 May –             Inviting MSPs to be involved in NEW media opportunities in their constituencies

14 May –             Epilepsy: Psychological and Social Wellbeing conference, Edinburgh

19 May –             River Clyde Zip slide

20 May –             JEC display in Scottish Parliament, Edinburgh

20 May –             Epilepsy Scotland representative at Westminster JEC awareness-raising event with
                       MSPs

21 May –             JEC display in Scottish Parliament with MSPs photo call, Edinburgh

Epilepsy Outlook, Hartlepool will be holding a three-day tombola at the local hospital, 2 days collecting at local supermarket, a flag day, a sponsored walk, a sale of bric-a-brac and household items on local market day and a grand prize draw. Further details can be obtained from Jacqui Gettings, Epilepsy Outlook - team@epilepsyoutlook.freeserve.co.uk . 

  

The National Society for Epilepsy in Chalfont is planning to hold a road show at Oxford University entitled “Epilepsy – what’s next?”  for people who want to learn more about epilepsy, to hear personal stories and to meet others who are living with the condition.  NSE’s Medical Director, Professor John Duncan will be on hand to answer questions when the event takes place in the Ruskin Room, Worcester College, Oxford at 7.00 pm on the 19th May.  The event is free and open to anyone affected by epilepsy.

All enquiries and RSVPs to enquiries@epilepsysociety.org.uk or phone 01494 601414.

 

Special Notices   

JEC News
October 09 edition now available online - click here

"Best Value, Better Care - Commissioning Epilepsy Services" Tues 23 Feb 2010 - Holiday Inn, London Kensington Forum
The JEC is jointly planning a one-day event for PCT and SHA Commissioners responsible for epilepsy services. High quality epilepsy services can change lives - find out how this can be achieved through effective, targeted commissioning at this one day event from the JEC, the Department of Health and UCB Pharma.
Full Programme
Register

UK Epilepsy Research Network (UKERN)
Over the past three years there have been discussions about the formation of a UK Epilepsy Research Network (UKERN). The network will be open to all epilepsy researchers with the purpose of raising the standard of epilepsy care, improving the co-ordination and quality of epilepsy research and to facilitate collaboration between epilepsy centres. Meetings have been held for professionals with an interest in epilepsy research around the UK, to decide upon a firm proposal for the structure and management of the UKERN. These were chaired by Professor Tony Marson from the University of Liverpool.

It has been decided that an integral part of the UKERN should be patient and public involvement (PPI) to enable people with epilepsy and their friends, family and carers to have a voice in the network and help determine the direction of epilepsy research in the UK.

As a starting point, UKERN would like to hear views on epilepsy research, the formation of the network and how people with epilepsy can be involved. Epilepsy Action is carrying out this work on behalf of UKERN. You can contribute by completing an online survey - click here. For a paper copy of the survey, contact Margaret Rawnsley at Epilepsy Action on 0113 210 8800.

JEC National Epilepsy Week 2010
National Epilepsy Week 2010 will take place between 13th and 19th June. The topic will be "Epilepsy and the Under-25s". Further details to follow.

Inverness SNP annual conference - October 2009

Aileen Campbell MSP & Public Health Minister Shona Robison

The JEC stand proved popular with delegates.  So much so that it attracted another Cross-Party Group supporter in Aileen Campbell MSP.  Public Health Minister Shona Robison also visited the display staffed by JEC members Epilepsy Connections, Epilepsy West Lothian, Epilepsy Scotland and Quarriers.

 

 


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