National Association of Hungarian People Living with Epilepsy - Short name: Valentine Association
Our Association was founded in December 2004. Our main target is to change the social adjudication of the people living with epilepsy. We know this is a very sensitive topic, but we hope that together we can improve the life quality of those 60.000 Hungarians living with epilepsy.
During its activity, our Association welcomes people who want to support us in achieving our targets. We also welcome other Hungarians living with epilepsy. With our background of professionals we try to find solution for any type of problem.
Our address is:
National Association of Hungarian People Living with Epilepsy
1184 Budapest, Lenkey street 7.
Tax Nr. 18253966-1-43
Bank Account:11600006-00000000-41315253 (Erste Bank)
We hope that in years we will grow into a big, strong association of national dimension.
President of the Association
Together on the Valentines Day - XVI. National Epilepsy Day, 18.th February 2012.
This year we organised the official day of the people living with epilepsy, on St. Valentines Day.
The first presenter was Dr. Judit Saracz. She presented the difference between the hungarian and international life philosophy by comparing paintings of hungarian and international children. Her presentation was very interesting, even for grown up people. The hungarian paintings were about sadness and exclusion, the paintings of american children presented happiness and evenness.
Mr. Professor Péter Halász talked about the importance of the work of civil organisations for human rights. Our Association already started to work on the majority of the points presented by him. He emphasised that the internet is a very important factor in keeping contact with our fellows.
Dr. Judit Békés talked about the social problems and the solutions of these problems of the people living with epilepsy. Nowadays many of our fellows must seek the advice of a psychologist.
In the end, Homonnai Andrea, the officer of the regional labour center presented the new referring law and the new legal opportunities. Her presentation was a great success, because many of the visitors were informed for the first time about the new legislation. Everyones questions were answered.
This year we had much more visitors than in the years before. I think the Valentines Day was usefull for our fellows, and I hope they will visit us next year as well.
Zsolt Szabó, President of Association
Epilepsy Day in Balatonvilágos - 16.th of February 2012
Dr. Judit Saracz neurologist hold a very interesting presentation ont he 2. Epilepsy day in Balatonvilágos. It was very exciting to see how many people living with or without epilepsy came to this event. The presentation of Dr. Saracz was very professional, but also very colourful. One of the most important targets of this presentation was to dissolve and explain misunderstandings beliefs related to epilepsy. We are sure that the people who attended this event will, in the future show much more empathy and understanding towards their friends and colleagues living with the "morbus sacer".
We were in the Parliament - 13.th of February 2011
On 13.th February 2011 we attended the European Day for Epilepsy in the European Parliament. We considered for very important to contact the members of the Hungarian Parliament as well. Therefore, this year we attended an open debate in the Hungarian Parliament, and we handed over our questions and requests to all its members. All of them showed high interest for our topics, and many of them were very surprised by the facts and numbers presented. We hope to keep the good connection with them in the future, and we hope to welcome them on some of our events.
Zsolt Szabó, President of the Association
What did we do in the last months of 2011? - 25.01.2012.
In november 2011 our Association attended for the second time the biggest civil fair in Hungary for people with disabilities, organised once a year, called „The world is better with us”. It was a great experience to meet other associations with similar activities. Many visitors attended our information desk. It was a great experience to discuss with open minded people about everyday life of people living with epilepsy, to share ideas and experiences.
„Our secret fellow: the epilepsy”
We edited our new informational booklet with the title „Our secret fellow: the epilepsy”. This booklet presents in a very simple, but interesting way the everyday life of people living with epilepsy, and helps to dissolve the misbeliefs, and legends around us. The whole booklet was written and ilustrated by people living with epilepsy. We spread this booklet throughout the country. We send free copies for those people and associations interested.
"Emma Beamish is an Irish International Cricketer who has represented Ireland at the highest level, participating in the 2005 Cricket World Cup in South Africa. - Emma has taken part in a documentary series on her life on Ireland’s National Broadcaster, RTE, which examined how Emma learnt to live with epilepsy. We are delighted that Emma has agreed to participate in our discussion on the 29th November and are certain that she will contribute to a fruitful discussion" - November 2011.
Source: Epilepsy Advocacy Europe - ILAE/IBE
Following on the successful passing of the Written Declaration on Epilepsy, the European Advocates for Epilepsy special interest group of MEPs, together with the ILAE/IBE joint task force Epilepsy Advocacy Europe, is holding a workshop on the topic of Epilepsy and Sport in the European Parliament in Brussels on Tuesday 29th November 2011.The event will run from 12:30 to 14:00 and is being hosted by Austrian MEP Angelika Werthmann. The workshop is open to all interested persons.
The epilepsy has now been officially recognised by the Pan American Health Organization and the World Health Organisation as a healthcare priority. IBE is very grateful to Carlos Acevedo, IBE Secretary General and to Marco Medina (Honduras) for their dedicated work in achieving this result. Epilepsy will now remain as a health priority in the Americas for the next 10 years.
GOVERNMENTS IN THE AMERICAS REGION TO CREATE EPILEPSY CARE PROGRAMS
GOOD CORPORATE GOVERNANCE FOR NGOS.
"Grace Tan, IBE Treasurer, whose professional career is in the field of corporate governance, made a very well received presentation on the subject of good corporate governance for non-governmental organsations during the meeting of the CEO Network at the International Epilepsy Congress in Rome, August 2011. In response to requests from those who attended the meeting, Mrs Tan has provided her presentation so that it can be shared with all IBE members."
Click here to download the presentation.
NEWS - september 2011.
Below you can watch the EU parliament video showing the announcement by the President of the approval of the Written Declaration on Epilepsy and the response by Mrs Angelika Werthmann (one of the co-signatories).
WRITTEN DECLARATION ON EPILEPSY SUPPORTED BY 459 MEPs
"We are delighted to announce that the European Written Declaration on Epilepsy has passed, with its approval announced during the plenary session in the EU Parliament in Strasbourg yesterday (Thursday 15th September)."
As part of IBE’s Golden Jubilee celebrations, a special IE News award has been introduced to reward the best contribution to IE News received during 2011. The award was launched at the 29th International Epilepsy Congress in Rome at the end of August. The IE News Jubilee Award is open to everyone and full details are included on page 2 of the attached document. With a closing date of 31st December, there is no time to lose if you would like to take part.
What really matters survey
In collaboration with Eisai Europe Ltd, the IBE has helped to develop a European-wide survey called “What Really Matters...” By taking a few minutes to complete this short survey, people with epilepsy will be contributing to an unprecedented bank of experience and knowledge, which could be vital in helping shape developments in epilepsy care in future years.
2011. The poster is being used during the plenary sessions in Strasbourg to alert MEPs to the declaration and to remind them to sign. There is also a banner (2 metres high) that we have been using to draw attention to the Declaration in the parliament. The declaration books will be open for signatures again next week (4th – 7th July).
International Bureau for Epilepsy
Our organization has been invited to attend the first ever European Epilepsy Day, which will be held on the 14th of February at the European Parliament in Strasbourg. This will be followed by a two day conference where the reprezentatives of the organizations (from over 20 countries) will have a chance to share their experiences.
"Dear Gál Képviselő Asszony!
14th February will be the first ever European Epilepsy Day. To mark this important day in support of the more than 6 million people with epilepsy in Europe, a series of events will be organised in the European Parliament in Strasbourg on 15th February. The events will be attended by international and national
epilepsy organisations from more than 20 European countries, including Magyar Epilepsziával Élők Országos Egyesülete. We hope that you will be able to support this initiative and meet with us for a brief exchange of views (we will be present in the European Parliament in Strasbourg on 15th and 16th February). An invitation including information on the European Epilepsy Day events which will take place on 15th February in the European
Parliament will be sent to you in due course. If you have any questions in the meantime, please do not hesitate to contact us. 60000 people are affected by epilepsy in Hungary. Epilepsy is the most common serious disorder of the brain and affects men, women and children of all ages and social backgrounds. Epilepsy damages health, but also disrupts every aspect of life - imposing physical, psychological, social and financial burdens on individuals and families.
We are convinced that European Epilepsy Day will help to raise awareness and contribute to improving the lives of people with epilepsy in Europe and in Hungary. However, we cannot succeed without your help! Thank you very much in advance for your support.
International Bureau for Epilepsy
With the occasion of the European Epilepsy Day a press conference will be held in Budapest on the 14th of February 2011.
Location: Vörösmarty hall, Magyar Tudományos Akadémia
14. 02. 2011., 10 a.m.
Opening- Dr.Jerney Judit, the president of the Hungarian Epilepsy League
WHO Global Campaign - Dr.Pusztai Zsófia, the Office director of WHO Hungary
Epilepsy 2011 - Prof.Dr.Halász Péter
The diagnosis of epilepsy - Dr.Juhos Vera
Epilepsy therapy - Prof.Dr.Janszky József
Epilepsy and society - Dr. Békés Judit
Misbeliefs about epilepsy - Prof.Dr.Rajna Péter
Epilepsy and the organizations - Réczi Márta
The main results of our Association
One of our main results is that, since the 23.th of March 2005 we are public benefit organisation.
We are continously working on achieving the goals included in our constitution. We contacted local organizations from many regions of the country, and, during our personal meetings we agreed on the main points of the future cooperation. This way we made us known in 12 counties of Hungary.
We use our contacts to the mass media in order to change the current incomplete and negative social image about epilepsy.
Another important target is ti build up a system of contacts to the media and politics. We contacted the politicians of many parties, and we presented our objectives to them. During these meetings we were very successfull, even when debating concrete problems.
We consider very important to keep connection with the local civils and schools, and to provide them with information and materials about epilepsy. Many sportmen and artists do support our activities regularly with their presence.
We created our homepage which was modernized during 2010. július 14. As recognition of our activity, our Association was included, in Mai 2008 to the members of IBE. So our Association represents Hungary in this organization.
We are contstantly working in building out a strong financial background for our Association.
President of the Association