European Forum on Epilepsy Research – Speakers’ Presentations
18th – February 2013: European Epilepsy Day was celebrated in the European Parliament through a series of events organised by the IBE/ILAE Joint Task Force – Epilepsy Advocacy Europe. Representing the Task Force in Brussels were Mike Glynn, Emilio Perucca, Janet Mifsud and Ann Little.
Stand Up For Epilepsy Photography
Throughout the week, an exhibition of 45 images from the Stand Up For Epilepsy Photography project was mounted in a prominent position in the parliament. The images, from countries all over the world, feature famous international and Olympic sports people, including Usain Bolt, photographed with people with epilepsy – some of whom are sports people in their own right.
Prevalence and Costs of Epilepsy
On Tuesday afternoon, an important workshop on Prevalence and Costs of Epilepsy was hosted by Gay Mitchell, MEP, with speakers Torbjörn Tomson (Sweden) and Christine Linehan (Ireland). The workshop highlighted the wide variance in past surveys on epilepsy prevalence and the need for pan European research to establish accurate figures so that the true cost of epilepsy can be determined.
Gay Mitchell also hosted an evening reception for the official launch of the Stand Up for Epilepsy exhibition, which featured a gymnastic display by a young Hungarian girl, 12-year old Veronika Mitykó. Veronika has childhood epilepsy and, despite the fact that her epilepsy is fully controlled and, despite the fact that her medical consultant has certified that she is fit to perform, she has been denied the right to complete (and to practice her sport) in Hungary. We hope that Veronika’s presence in Brussels will help to end this unfairness.
More than 100 people attended the event, including 20 MEPs and a large number of assistants. The MEPs included Gay Mitchell MEP (Ireland), Sean Kelly MEP (Ireland), Mairead McGuinness MEP (Ireland), Jim Higgins MEP (Ireland), Pat The Cope Gallagher MEP (Ireland), Liam Aylward MEP (Ireland), Emer Costello MEP (Ireland), Diane Dodds MEP (Northern Ireland), Fiona Hall MEP (UK), Filip Kaczmarek MEP (Poland), Nathalie Griesbeck MEP (France), Anna Zaborska MEP (Slovakia), Angelika Werthmann MEP (Austria), Patrizia Toia MEP (Italy), Alf Svensson MEP (Sweden), Tamás Deutsch MEP (Hungary) amongst others. You can watch a short video of the event here:
In addition, a number of private meetings took place with MEPs over the two days including Elisabetta Gardini MEP (Italy), Giancarlo Scottà MEP (Italy), Nessa Childers MEP (Ireland), Marian Harkin MEP (Ireland), Filip Kaczmarek MEP (Poland), Liam Aylward MEP (Ireland) and Vicky Ford MEP (UK). Representatives of the Joint Task Force also had a meeting with Dr Tonio Borg, EU Commissioner for Health and Consumer Policy.
While the day will be celebrated across Europe on Monday 11th February, due to the European Union calendar, events to mark the 3rd European Epilepsy Day will take place in the European Parliament in Brussels one week later, commencing Monday 18th February.
Stand Up for Epilepsy Photography Exhibition
This exhibition, which was first mounted in London during the European Congress on Epileptology in 2012, is a collection of images of sports stars photographed with people with epilepsy. The idea for the exhibition stemmed from London’s hosting of the 2012 Olympics. Among the 45 images included are several famous faces such as Usain Bolt!
The exhibition is being mounted on the ground floor of the Altiero Spinelli Building: ASP G block, Ground Floor (beside the MEPs restaurant) and will be in place until Friday 22nd February.
A reception to officially launch the photography exhibition will take place on Tuesday 19th February, starting at 18.30. The reception is being hosted by Gay Mitchell MEP and the name of the guest speaker will be announced in the coming day. A special part of the reception will be a gymnastics display by a young Hungarian girl, Veronika Mytikó. Veronika is being prevented from access to her gym and from gymnastic competition by Hungarian authorities on the basis that she has epilepsy. This is despite the fact that her epilepsy is fully controlled and her medical consultant has certified that there is no medical reason why she cannot participate in the sport.
Workshop on Epilepsy Costs & Prevalence
A one hour workshop, on Epilepsy Costs and Prevalence will take place on Tuesday 19th from 14:00 to 15:00. Hosted by Gay Mitchell MEP, the speakers will be Torbjörn Tomson (Sweden) and Christine Linehan (Ireland).
A number of private meetings have been arranged in Brussels. These include a meeting with EU Health Commissioner Tonio Borg. Representatives from IBE and ILAE member associations are welcome to attend the Stand Up for Epilepsy Reception and/or the Workshop on Epilepsy Costs and Prevalence.
However, prior intention to attend must be sent to our colleagues in the International Bureau for Epilepsy.
Please use their Contact Form on the website to write to us.
The 3rd annual European Epilepsy Day will be celebrated across Europe by IBE and ILAE member associations on Monday 11th February 2013.
The IBE/ILAE Joint Task Force Epilepsy Advocacy Europe is organising a week of celebrations in the European Parliament in Brussels, starting on Monday 18th February. Events planned include an exhibition of the photography initiative Stand Up For Epilepsy, featuring international athletes pictured with people with epilepsy; as well as a reception to launch the exhibition. It is also hoped to organise an significant workshop on the Prevalence and Cost of Epilepsy.
Further details will be available as plans progress.Is your association planning anything special for European Epilepsy Day? If so, we would love to hear from you so that we can share your great idea with other members.
For further information, please click here.
To access the latest newsletter of the European Joint Task Force of ILAE/IBE, please click NewsletterAugust2012
The European Advocates for Epilepsy is a group of Members of the European Parliament (MEPs) dedicated to improving awareness for epilepsy at EU level.
There are currently 30 MEPs who are members of this group but more members are always welcome. The European Joint Task Force on Epilepsy would like to invite interested persons to urge their local MEPs to join the group.
The current list of European Advocates is made up of the following members:
|President||Mitchell, Gay||Ireland, EPP|
|Vice President||Casa, David||Malta, EPP|
|Vice President||Gallagher, Pat the Cope||Ireland, ALDE|
|Vice President||Werthmann, Angelika||Austria, NI|
|Vice President||Skinner, Peter||UK, S&D|
|Vice President||Deva, Nirj||UK, ECR|
|Arsenis, Kriton||Greece, S&D|
|Childers, Nessa||Ireland, S&D|
|Costello, Emer||Ireland, S&D|
|Engel, Frank||Luxembourg, EPP|
|Harkin, Marian||Ireland, ALDE|
|Griesbeck, Nathalie||France, ALDE|
|Gyurk, Andras||Hungary, EPP|
|Kaczmarek, Filip||Poland, EPP|
|Kirilov, Evgeni||Bulgaria, S&D|
|McGuinness, Mairead||Ireland, EPP|
|Millan Mon, Francisco||Spain, EPP|
|Mikolasik, Miroslav||Slovakia, EPP|
|Ouzky, Miroslav||Czech Republic, ECR|
|Pietikainen, Sirpa||Finland, EPP|
|Poc, Pavel||Czech Rep, S&D|
|Roithova, Zuzana||Czech Republic, EPP|
|Scotta, Giancarlo||Italy, EFD|
|Stevenson, Struan||UK, ECR|
|Svensson, Alf||Sweden, EPP|
|Takkula, Hannu||Finland, ALDE|
|Tannock, Charles||UK, ECR|
|Thyssen, Marianne||Belgium, EPP|
|Toia, Patrizia||Italy, S&D|
|Tzavela, Niki||Greece, FDG|
|van de Camp, Wim||The Netherlands, EPP|
|van Dalen, Peter||The Netherlands, ECR|
To find a list of your local MEPs please click here.
If you are interested in writing to your local MEP please first contact email@example.com who can provide you with further information and a template covering letter.
The more MEPs who can assist us the greater the possibility for improving awareness at EU level.
The 10th European Congress on Epilepstology will take place in London on September 30th – October 4th this year.
There will be a particular session focussing on epilepsy healthcare and research.
Time: Tue, Oct 2. 2012 14:30 – 16:00
Room: Hall G
“What the professionals need to know to improve healthcare and research”
Chairs: Emilio Perucca and Mike Glynn
What is the best political agenda for epilepsy in Europe?
Speaker: Nirj Deva, MEP
Epilepsy on European health care agendas: Cost vs. Outcomes
Speaker: Prof. Torbjörn Tomson
Epilepsy on the EU research agenda
Speaker: Dr. Philippe Cupers, DG Research & Innovation’s Health Directorate
For further information please visit the website: http://www.epilepsylondon2012.org/