In commemoration of National Epilepsy Week (19th until 25th May 2013) plus the launch of their own Meath Extreme Sports Club, residents and staff from the Meath Epilepsy Trust in Godalming, Surrey are undertaking an ‘extreme’ 50-mile Canoe Challenge along the Thames over the Bank Holiday weekend ... Read More

David McGarry from Cramlington, Northumberland is doing a yearlong XL Challenge to raise money for Dravet Syndrome UK. David plans to do 40 challenges in 2013 to mark the year of his 40th birthday and the challenges range from bush tucker trials to running marathons. All of the money raised will go straight to the charity Dravet Syndrome UK, to help support ... Read More

We are delighted that JEC Executive member Shirley Maxwell, Executive Director of Epilepsy Connections has been elected to the IBE European Regional Executive Committee. Our warmest congratulations to Shirley on this appointment ... Read More

The Changing Face of Epilepsy - the topic for NEW 2013 - is tackled in a MediaPlanet supplement in the Guardian newspaper. ... Read More

From February 11th 2013 – European Epilepsy Day - Brainwave, The Irish Epilepsy Association has become Epilepsy Ireland. Speaking about the name change, Mike Glynn, CEO of Epilepsy Ireland said “At a time when people are encouraged to speak more openly about epilepsy, we need to lead the way with a name that doesn’t hide the condition we represent ... Read More

We are delighted that Professor Matthew Walker, Chair of the Joint Epilepsy Council, has been awarded an Ambasador for Epilepsy Award by the International Bureau for Epilepsy (IBE) and the International League Against Epilepsy (ILAE).
The Ambassador for Epilepsy Award is given to individuals to recognise outstanding personal ... Read More

Epilepsy Action have produced a new report - A Critical Time for epilepsy in England. The report shows that epilepsy health services in England are not good enough and vary in many areas. It also shows that many of the new organisations responsible for NHS services are not considering epilepsy in their plans for the future ... Read More

Sunday 19th - Saturday 26th May - the Many Faces of Epilepsy. There are more than 30 epilepsies and different forms of seizures. To recognise the wide range of the condition and the services, information and support offered by the UK epilepsy charities within the JEC, the theme for 2013 will be "the Many Faces of Epilepsy". Further information ... Read More

DRAVET Syndrome UK have launched a new Professional Guide to Diagnosis which was produced in conjunction with Professior Ingrid Scheffer, Professor of Medicine and Paediatrics at the University of Melbourne, Australia, Dr. Elaine Huges at Kings college Hospital, London and Dr. Sameer Zuberi of the Epilepsy Genetics Service, Royal Hospital for Sick ... Read More

Work on the final phase of Quarriers’s new Scottish Epilepsy Centre (SEC) is now underway. The £6.4 million state-of-the-art centre in Govan, Glasgow, is on course to open its doors in spring 2013. Located close to the Institute of Neurology at Glasgow’s Southern General Hospital, the 12-bed hospital will replace the charity’s existing centre in Quarrier’s ... Read More

Epilepsy12 - United Kingdom collaborative clinical audit of health care for children and young people with suspected epileptic seizures. Epilespy12 – a national three-year audit to help improve patient outcomes and the quality of care and service provided has been published. Epilepsies are common neurological disorders of childhood, with a significant morbidity and ... Read More

JEC member Epilepsy Action has launched a brand new resource for GPs and those working in primary care. The ‘primary care resource pack’ is a one-stop-shop for information and advice about epilepsy. It provides a range of tools, templates and resources for healthcare professionals working in primary care. Epilepsy Action has worked closely ... Read More

A parliamentary reception, hosted by Valerie Vaz MP and Sam Gyimah MP and organised by the JEC, was held in Portcullis House, Westminster, on Monday, 2nd July. Head teachers and staff from schools all over England were invited to attend this event at the House of Commons to hear more about the issues faced by young people with epilepsy ... Read More

Mike Keighley, Chief Executive of JEC member the Meath Trust will be canoing taking on a canoe challenge on the river Thames to increase awareness for National Epilepsy Week 2012 and to raise sponsorship for a £2.3 million appeal running currently at the Meath to build a brand new specialist facility packed with assistive technology to care for and ... Read More

Three forthcoming epilepsy events will provide information to professionals working with, and parents and carers of, a child or young person with epilepsy. ... Read More

The Joint Epilepsy Council and its members have worked with Mediaplanet to produce an epilepsy supplement in Monday, 21st May's edition of the Guardian newspaper. Thanks to all who took part to help raise awareness of the condition during this, National Epilepsy Week (20th - 26th May 2012) ... Read More

A parliamentary reception, supported by MPs Valerie Vaz and Sam Gyimah is currently being organised by the Joint Epilepsy Council. The reception will take place on Monday, 2nd July at 12 noon in the Atlee Suite of Portcullis House and personnel from schools all over England will be invited to hear more about how to best enable learning for pupils with ... Read More

The first meeting of a new All-Party Group on Epilepsy in Northern Ireland, supported by the JEC, will be held at Stormont at 1.00pm on Monday, 30th April. George Robinson MLA will chair the meeting and Dr. Jim Morrow will outline current services for epilepsy in NI. This will be followed by election of MLA officers and future meeting dates ... Read More

The JEC yesterday organised a climb of the Big Ben clock tower at Westminster to mark Purple Day, the international day for epilepsy awareness. For the first time in 10 years, people with epilepsy are now allowed to make the ascent due to a revision of the health and safety rules. To celebrate the lifting of the ban, MPs Laura Sandys ... Read More

Emma Williams, founder of JEC member Matthew's Friends, and trustee of the JEC, has been chosen as an olympic torch bearer, helping to carry the olympic flame as it journeys across the UK. Click here for more details (link to the press release). All out congratulations go to Emma for this well deserved accolade ... Read More

To mark Purple Day this year we have arranged for 12 people affected by epilepsy to climb Big Ben Tower. They will be accompanied by MPs Laura Sandys and Paul Maynard, both of whom have the condition themselves and who are both officers of the All-Party Parliamentary Group on Epilepsy at Westminster ... Read More

The JEC has now updated its Guideline on Training Standards for the Administration of Buccal Midazolam to reflect new recommendations in the recently published NICE Epilepsy Guidelines (January 2012) and the recent change of licensing status of some buccal midazolam products for use with children and young people up to the age of eighteen. ... Read More

NICE has published a new epilepsy clinical guideline to update and replace NICE clinical guideline 20, published in 2004. It also updates and replaces NICE technology appraisal 76 (2004) and NICE technology appraisal 79 (2004). It offers evidence-based advice on the care and treatment of children, young people and adults with epilepsy. New recommendations ... Read More

The new JEC Epilepsy prevalence, incidence and other statistics were examined by BBC Radio Scotland in the programme "The Investigation: Epilepsy in Scotland which was aired on Sunday, 4th December, 2011. The programme, which featured interviews with the JEC and JEC Scottish member organisations, examined whether adequate provision is being made in ... Read More

Emergency medication Buccolam, which is used to treat prolongued convulsive seizures tht may progress to status epilepticus, has been given european approval for the treatment of babies over three months old and children under the age of 18. The liquid form oral midazolam treatment, produced by pharmaceutical company Viropharma, comes ... Read More

The JEC is holding a reception in Parliament, supported by Members of Parliament Valerie Vaz and Sam Gyimah to explore issues and discuss solutions to the long history of children with epilepsy failing to reach their educational potential. Representatives from local authorities responsible for medical conditions and SEN in schools have been ... Read More

On 1 November 2011 the National Centre for Young People with Epilepsy (NCYPE) launched its new name, Young Epilepsy. The new name reflects the charity's change into a national charity that supports the 112,000 children and young people under 25 with epilepsy in the UK. Young Epilepsy knows there is a huge demand for information and support for ... Read More

The Prime Minister, David Cameron MP, met with Valerie Vaz MP, Laura Sandys MP, Professor Helen Cross and Karen Deacon, Simon Wigglesworth and Sharon Wood from the Joint Epilepsy Council yesterday (12th October 2011) to discuss the shortcomings in Health and Education services for people with epilepsy. The PM undertook to consider Valerie Vaz's epilepsy ... Read More

MREA will be holding a memory workshop, led by Professor Gus Baker on Thursday 20th October, 2011. Please click here to see the agenda. The workshop will be of interest to people affected by the condition or those working with them and a place on the workshop can be booked with Chris Seddon ... Read More

Epilepsy Scotland, on behalf of the Joint Epilepsy Council, and sponsored by Dr. Richard Simpson MSP, will be holding an event for MSPs in the Scottish Parliament to examine transition services for people with epilepsy. The event will take place on Wednesday, 21st September, 2011 in Committee Room 4 of the Scottish Parliament, Holyrood, Edinburgh fro 6pm onwards. ... Read More

It has come to our attention that a review of the case notes of children with epilepsy will take place at the Royal Surrey County Hospital. This is in response to concerns raised about the medical practice of a consultant paediatrician with an interest in epilepsy and neurology, at the hospital. ... Read More

Laura Sandys MP and Chair of the All-Party Parliamentary Group on Epilespy, who has epilepsy herself, recently took part in an interview with Graham Faulkner, Chief Executive of the Epilepsy Society. View the video. ... Read More

Epilepsy Action is conducting a short survey about the first aid experiences of people with epilepsy. Please, if you can, encourage your stakeholders to compelte this survey before 12 August. It can be completed online at www.epilepsy.org.uk/survey or you can order hard copies from ... Read More

The JEC Marketing and Communications Group have recently produced a guide to epilepsy for MPs which contains key facts about the condition and signposts relevant guidelines or sources of information in all countries of the UK, as well as JEC member helplines. ... Read More

Epilepsy Action is very proud to own Seizure and we are looking to recruit a new Editor or team of Editors to continue the excellent work of Professors Boon and Aldenkamp whose terms as Editors will end in February 2012. ... Read More

Earlier this year, the Joint Epilepsy Council featured in a major national publication, helping to raise large-scale awareness of the condition. ... Read More

VODG, the Voluntary Organisations Disability Group is organising a lobby of Parliament and rally which will take place on 11th May, 2011 to express solidarity and anger at the cuts threatening benefits, services, jobs and rights ... Read More

Scottish JEC member organisations staffed JEC Exhibitions at the Scottish National Party and Scottish Liberal Democratic conferences in advance of the Scottish Election. Shown here are Shirley Maxwell from Epilepsy Connections with Tavish Scott MSP at the Lib Dem Conference and Allana ... Read More

The JEC 2011 AGM will take place on Friday, 24th June, kindly hosted by member organisation the National Centre for Young People with Epilepsy (NCYPE) in Lingfield Surrey. The day will run from 11.30 am – 3.00pm approximately, offering an opportunity for JEC members to hear more and ... Read More

The ten minute rule bill is scheduled to receive its second reading on the 20th January, 2012 ... Read More

As part of National Epilepsy Week, on Wednesday 18 May, Epilepsy Action will be holding its first ever Epilepsy Action Radio (EAR) day, broadcasting live online from 8am until 8pm (British Summer Time, (GMT+1)) ... Read More

All of our study days are delivered by experienced professionals who work with young people with epilepsy. ... Read More

Epilepsy Action is pleased to announce that applications are now open for the second round of our new funding scheme called “Diamond Projects”. The idea of Diamond Projects is to support valuable community based projects that improve the lives of people with epilepsy, which may not otherwise ... Read More

Brainwave - The Irish Epilepsy Association have announced a call for epilepsy-focused research projects for 2011. ... Read More

Baroness Margaret Ford, APPG on Epilepsy Officer and President of Epilepsy Action has obtained a short debate in the House of Lords. The following question was tabled in the Lords on the 23rd November for a short debate on the 30th: ... Read More

An EDM in connection with the recent announcement of the withdrawal of legal aid for claimants in the Fetal Anti-Convulsant Litigation was tabled by Teresa Pearce MP on the 17th November. You may like to encourage your MP to sign this EDM ... Read More

Epilepsy Scotland have recently released two brand new publications aimed at pre-school and early primary children. The books colourfully illustrate the stories of epilepsy sufferers and their friends and family, showing the way in which common scenarios can be dealt with. ... Read More

 

Earlier this year, the Joint Epilepsy Council featured in a major national publication, helping to raise large-scale awareness of the condition. The supplement, distributed within the Guardian newspaper, offered a four step guide to understand epilepsy and featured an article written by comedian Russel Howard, whose younger brother suffers from the illness. ... Read More

The Department of Health, UCB Pharma and the Joint Epilepsy Council hosted an event on commissioning epilepsy services in February 2010 at the Holiday Inn, London Kensington Forum. This was a key opportunity for clinicians and commissioners of epilepsy services to come together to find out how commissioning high quality ... Read More