This year, all across Europe, many activities and events were held to mark European Epilepsy Day 2014.
Please scroll down to view events from many countries – we will be adding more events from our members around Europe over the next few weeks, so please do come back to look!
Croatian Association For Epilepsy
The conference was opened by the representative of the City Department for Health, Dr. Slavko Antolić who expressed his appreciation of the work of the Association and pronounced future cooperation and support to the Association from the Department of Health.
Three presentations followed, by medical professionals dealing with epilepsy:
- INTRODUCTION AND MEANING OF EED
Prof. Ivan Bielen, PhD, MD, President of the Croatian Association for Epilepsy
- NEW POSSIBILITIES FOR EPILEPSY TREATMENT
Prof Hrvoje Hećimović, PhD, MD
- LIFE OF A FAMILY WITH A CHILD WITH EPILEPSY
Marina Grubić, PhD, Clinical Psychologist
The presentations were followed by an open discussion and a small banquet which provided an opportunity for the participants to share their experiences in an enjoyable atmosphere.
Attendees expressed their appreciation of the conference and further activities are now in planning.
Finnish Epilepsy Association (FEA)
Finnish Epilepsy Association (FEA) promotes the rights of PWE with the IBE EED theme epilepsy is more than seizures. The campaign takes place the whole year and all over the country.
EED 2014 was launched on the 10th of February 2014 in Helsinki, with an educational event to HR professionals of companies with a large number of employees.
Website / Electronic Postcard Campaign
The card can be sent to decision makers with the messages like “Have courage to make good decisions”.
This EED postcard campaign was heavily promoted on the FEA Facebook page. Click here to visit the FEA Facebook FEA sent almost 2000 emails to Finnish decision makers – made up of MEPs of the European Parliament and the Finnish Parliament, as well as member of local councils of Finnish cities and communities.
The Faces of EED 2014 in FinlandMs Nora Klemola, Assistant of the Supreme Court and Mr Juha Karjula, Kindergarten Teacher, speak openly about how their drug resistant epilepsies have effected in their capabilities to work in their professions.
A Personal Story
|Marja Suonpää has learned to appreciate herself in her early fifties. “I have been able to study and have succeeded in my work despite my epilepsy”. She works as senior inspector in The Finnish Safety and Chemicals Agency.
Marja - a fighter and survivor Reflection on Epilepsy
You can read Marja's full story and many other stories, by CLICKING HERE
It is planned for local chapters of FEA to hold face-to-face events at local markets and fairs at which our volunteers will inform people about the effects of epilepsy on everyday life of PWE. There are almost 30 events planned for 2014. FEA has produced material for volunteers such as flyers, magazine, match boxes, balloons and posters. Previously in 2013 we produced tents with our logo for campaigning on the streets, which we will use again this year.
The media release of EED has already been published in many Finnish medias and there is more publicity to come when our volunteers take the special media release personally to the smaller newspapers and radio stations at local level. In addition to that we have challenged our volunteers to send the electronic postcards from the campaign website to their local politicians and officials. We will “bombard” candidates of the European Parliament elections with a special message in which we “cry for” more resources to be awarded to epilepsy research. This is a joint message delivered by our FEA volunteers and the Finnish Chapter of ILAE. FEA has been active in every EED. Little by little we are learning more about how this campaign can gain a great deal of publicity. It a campaigns where our volunteers are able to participate in many ways. At the same time we communicate openly about the many sided disease that epilepsy is and make a change step by step in the attitude and knowledge of the Finnish decision makers.
|A Piece of Cake!
European Epilepsy Day has been celebrated in Georgia since its introduction in 2011. This year was no exception with a special event held at the Institute of Neurology and Neuropsychology, in Tbilisi.
Nino Gzirishvili sent IE News some great photos of a very special EED cake. She told us that the Georgia association invited a pharmacology agency, who have supported the association every year with its EED celebrations to the institute and had a special Thank You event with a cake decorated with the image of the EED 2014 poster.
Members of the agency were presented with certificates to recognise their support and this also gave the association the opportunity to talk about epilepsy in Georgia and to discuss plans for next year’s European Epilepsy Day.
A second event, organized by the Hungarian League, was a meeting with representatives at the Ministry of Public Administration and Justice, the Ministry of Human Resources, the Presidents of the Hungarian lay organizations and the executive Board of the Hungarian Chapter of ILAE.
February 10th was European Epilepsy Day and and in Ireland, it was a hugely successful day for epilepsy awareness!
Epilepsy Awareness Campaign
To mark the annual occasion and raise epilepsy awareness, Epilepsy Ireland has been running a radio and press advertising campaign fronted by Ireland rugby head coach Joe Schmidt focused on seizure first-aid.
T: Take care to protect the person
E: Ensure you stay with them
A: Allow the seizure to run its course (you cannot stop a seizure and in most cases it will last for a few seconds to a few minutes).
M: Move the person onto their side when the seizure is over (for tonic clonic seizures)
Seizure First-aid Survey
Epilepsy in the Media
To view a list of features from national newspapers, TV and radio throughout the day in Ireland, all highlighting different aspects of epilepsy, PLEASE CLICK HERE.
More awareness for death in epilepsy
In the Netherlands there are 80,000 people with epilepsy. On a global level it is estimated that there are 60 million people with epilepsy. Researchers at SEIN have been carrying out research for a number of years into the causes of epilepsy. One of the main themes of research at SEIN is that of sudden unexpected death in epilepsy (SUDEP). SUDEP refers to the sudden death of a person with epilepsy, where despite a thorough examinations, no cause of death can be determined. SUDEP mostly occurs in people with refractory epilepsy. To raise awareness for SUDEP the two epilepsy centres in the Netherlands, SEIN and Kempenhaeghe, together with professional associations and patient organisation have undertaken a joint initiative to produce information material and develop a register for SUDEP.
This gave the press the opportunity to pick which press release was of interest to them, and we feel this worked better (differentiating the press releases) compared to last year, when we just focused on one issue.
The SUDEP press release was picked up by national press and this appeared 23 times in national newspapers. The press release regarding the balloon competition was picked up by regional press and appeared 5 time in regional papers/radio. We are particularly pleased that the Haarlems Dagblad dedicated a two-page spread about the balloon-competition and SEIN/School De Waterlelie.
Have a Heart for Epilepsy
SUDEP is gaining more and more attention worldwide. You can help to raise awareness for epilepsy!
We also organised a give-away competition of 10 heart-shaped candles to promote EED 2014, to raise awareness for epilepsy and to raise awareness for our institution, SEIN. These activities were very successful.
Share ‘have a heart for epilepsy‘ with as many people you know (family, friends, acquaintances, colleagues). Have a heart for epilepsy! Place the ‘have a heart for epilepsy’ badge on your Facebook profile photo. CLICK HERE