NEWSLETTER OF THE INTERNATIONAL BUREAU FOR EPILEPSY - ISSUE 4 2010 INTERNATIONAL Epilepsy News

Global Campaign in Latin America

European Epilepsy Day in Strasbourg President's Note

Rome Congress now on the horizon

representatives from IBE member associa- highlight of our jubilee celebrations. One tions in Europe celebrated 14th February in of the most interesting events will be a Strasbourg in advance of the terrific events special gala dinner to highlight those in the EU Parliament on the 15th, which exceptional people who have been awarded you will read about in this issue. I would with Ambassador for Epilepsy Awards like to thank all those who were involved since they were introduced soon after IBE t has been a busy few months for IBE in EED, those who were with us in Stras- was founded. And have you seen the new since the last issue of IE News. While bourg, as well as the member organisations changes to the IBE website to highlight the end of a year can mark a period who arranged terrific activities at national IBE's Golden Jubilee? ofI slowing down and reflection, for the level. The enthusiasm of all made the Finally, I would like to highlight the new Bureau it was a time of great activity as we launch of EED a wonderful success! With IBE/ILAE Joint Task Force for research prepared for the important events taking annual epilepsy days now taking place in and advocacy in Europe. This group will place in 2011, IBE’s Golden Jubilee Year. several regions, IBE and ILAE are hop- focus on both social and medical research ing to announce the creation of an annual First up was European Epilepsy Day opportunities in Europe and will also International Epilepsy Day in the next few (EED), plans and preparations for which promote advocacy activities throughout months! started in mid-2010 when Europe including European Epilepsy Day. MEP kindly agreed to host the event on The 29th International Epilepsy Congress IBE’s behalf, supported by ILAE. EED will is now on the horizon and I hope that All the best, be celebrated on the second Monday of we will be able to welcome at least one Mike Glynn February each year, which coincidentally representative from each IBE member President fell on Valentine’s Day this year. Almost 50 association to Rome, which will be the

INTERNATIONAL RELATIONS ISSUE 4 - 2010 ECOSOC International Epilepsy News is the IBE enjoys Special Consultative Status on EDITORIAL TEAM quarterly newsletter of the Inter- the Economic and Social Council of the Editor: Carlos Acevedo national Bureau for Epilepsy (IBE) United Nations (ECOSOC). [email protected] and is circulated to IBE members, WHO Co-ordinator: Ann Little supporters and other subscribers [email protected] in more than 120 countries. All IBE is in official relations with the World Regional Sub Editors: enquiries to: Health Organisation (WHO). � Noeline de Goede (Africa) International Bureau for Epilepsy � Tomás Mesa (Latin America) � Lisa Boylan (North America 11 Priory Hall, Blackrock, SPONSORING PARTNERS � HV Srinivas (South East Asia) Co , Ireland. � Robert Cole (Western Pacific) E: [email protected] IBE acknowledges the support of its Advisors: T: +353 1 210 8850 partnering sponsors listed below. Please � Mike Glynn contact us if you would like to learn about www.ibe-epilepsy.org � Grace Tan sponsoring opporunties with IBE. � Abdulaziz Al Semari Gold Partner � Shunglon Lai All rights, including moral rights, reserved. No part � Susanne Lund of this publication may be reproduced, stored in a � Dainippon Sumitomo Pharma Co., Ltd � Janet Mifsud retrieval system, or transmitted in any form or by Silver Partners any means, without the prior permission in writing � Vinod Saxena � Eisai Europe Limited � from the publisher. The Editor reserves the right to Mary Secco edit content for reasons of space or clarity. The views � GlaxoSmithKline � Anthony Zimba expressed in this magazine are not those of the pub- � UCB Pharma � Nico Moshé lisher. Articles covering medical aspects of epilepsy � Emilio Perucca are not intended to be taken as advise. They are not Other Partners � Sam Wiebe intended to replace medical care. � Cyberonics

2 International Epilepsy News Editor’s Letter

Welcome to the newlook IE News

Melbourne last October, including the These are very appropriate awards, which Outstanding Persons with Epilepsy awards. encourage journalists to use correct ter- minology when writing or reporting on I would also like to congratulate Mrs Lynn epilepsy. Savill and Dr Simon Shorvon who have been honoured for their special dedication You will find that the tables have been t has been a great and delightful in the field of epilepsy. Still on the subject turned on me in this issue, as I am inter- summer here in the Southern Hemi- of awards, we highlight the winners of the viewed on the great strategic plan, which sphere, but it is now ending and, Excellence in Journalism Awards, which has been developed in Latin America in of course, the holiday season is also have just been announced. the framework of the Global Campaign coming to a close. against Epilepsy. I Harry Meinard is going to interest us with First of all I would like to welcome you to some further fascinating details about Finally, we encourage all readers to join this new design of IE News. We have made IBE’s history. It is very important to read IBE’s Photography Competition; we give a few changes that I hope you will like. In reports about activities at national level a small reminder to arrange this year's this first issue of the new look magazine, I around the world and in this issue we have dues payment and, in doing so, ask you to would like to announce that we have some news from Brazil, Colombia and Italy. I remember those less advantaged by making excellent material for our readers, includ- would like to invite you to submit news a contribution to the Fund. ing a special report on the first European from your association that we can include Best wishes, Epilepsy Day, which was celebrated on the in the next issue. Dr Carlos Acevedo 14th February in the . In this number we also publish the results There are also reports on the congress in of the Excellence in Journalism Awards.

Contents

1 President's Message 8 Report and interview about 14 More reports 2 Editor's Letter someone 14 Special mention about some- 4 A new report about some 9 Pictures from a recent con- thing new thing great gress 18 Another story 6 Another report about some- 11 More Pictures about some- thing new thing 8 Story sent by our member in 12 Another report Africa 13 A sample story

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International Epilepsy News 3 Melbourne Memories

busy year of regional congresses embarrassed or ashamed of their condition and such was the case in Melbourne, with came to an end with the 8th Asian and to fight to overcome the heavy cultur- meetings of the South East Asian Regional & Oceanian Epilepsy Congress in ally defined stigma and discrimination that Committee and the Western Pacific Re- MelbourneA in late October. The city and exists in the region gional Committee. There was a very good its people provided a warm welcome to representation of IBE members at each of Recipients of the award in Melbourne: delegates and the Scientific Committee, these meetings giving the opportunity to co-chaired by Simon Harvey (Australia), • Dr Michelle Bellon, Australia report on activities at local level as well as Shih Hui Lim (Singapore) and Shunglon • Ms Cindy Li, China to formulate plans for joint activities mov- Lai (Taiwan) ensured a terrific congress • Ms Li Ying Yi, Hong Kong ing forward. The meetings were followed program. The main congress topics: • Ms Kavita D Shanbhag, India by a joint meeting of the two regional committees and the chance to relax thanks • Depression and Epilepsy • Mrs Noriko Fukui, Japan to a very pleasant Cocktail Reception. • Prevention of Epilepsy • Mr T Munkh-Aldar, Mongolia Thanks are due to Robert Cole, Dr HV • Predictors of Outcome of Epilepsy • Dr Mike Hills, New Zealand Srinivas and their committees for making • Epilepsy and Driving • Dr Ronald Magbitang, Philippines these meetings possible. • lent themselves to discussion of the • Ms Shih-Min Li, Taiwan Particular thanks are due to Robert, social problems faced by people with There excellent presentations during the Denise Chapman and Graeme Shears who epilepsy, their carers and healthcare provid- Epilepsy & Society program. Graham worked hard over a long period of time ers. This was a very welcome aspect to Scambler from University College of to make sure that the Epilepsy & Society the overall programme providing an- London presented a keynote address on programme was the success. They certainly other opportunity to increase community epilepsy and stigma; popular Austra- succeeded! awareness of epilepsy in order to change lian television sports presenter and past attitudes and to help reduce stigma. Poster Exhibitions Australian Rugby League captain Wally Lewis, spoke movingly, and not without The huge scale of the Melbourne Congress Taking advantage of the opportunity, to a generous dollop of humour, of his own building gave us a great opportunity to coincide with the congress, the Epilepsy experience of epilepsy spanning more than showcase the work of IBE members in the Foundation of Victoria hosted a Service 20 years. region. An exhibition of Members Post- Practitioners Forum immediately before ers demonstrated the tremendous scope the start of the congress,which was attend- New Chinese Term for Epilepsy and diversity of activities carried out by ed by 44 staff members epilepsy associa- epilepsy associations in the region. Almost tions from all parts of Australia as well as An item of special importance was the thirty posters lined the walkway at the from New Zealand. The full day meeting news on the change of the Chinese term congress centre and were much admired by discussed topics of interest to all and also from epilepsy, which Anchor Hung ex- delegates. provided the platform to share knowledge plained. In Hong Kong, the Chinese (Can- tonese) word had caused much suffering to and experiences of best practice. We are now planning an extra special the persons with epilepsy, labelled 'crazy' poster display in Rome! Epilepsy & Society or 'insane' because of the old term, where the Chinese 1st character 'dian' meant Promising Strategies Showcased The special program for people with epi- 'crazy'. This had resulted in epilepsy being lepsy titled Epilepsy & Society was a high- regarded as a mental illness. Since its creation in 2005, the Promising light of the congress with 234 delegates Strategies Program of IBE has supported attending. Organised by the IBE Western The new term is a simple description of more than 30 project around the world. In Pacific Regional Committee supported by the biological nature of the condition, Melbourne we showcased the projects that the South East Asian Regional Committee, referring to 'brain'. This small change IBE has funded in the South East Asian this was one of the largest attendances at in the Chinese character now shows the and Western Pacific regions since the pro- such an event. condition to be neurological, thus instant- gram began with another poster display. ing reducing the stigma burden. This was The major highlight of this day was the This was enhanced by an exhibition of the a monumental achievement as there are presentation of the Outstanding Persons craftwork created by the Seahorse club in strict laws in place regulating the Chinese with Epilepsy awards. This was the 5th Shanghai, which received funding to create language and which are difficult to change. time that these awards had been presented an artists studio in the last round of fund- since they were first intorduced during the Following on the Hong Kong, the Korean ing. Thanks are due to Dr Ding Ding, who 4th Asian & Oceanian Epilepsy Congress government has also changed the word for was kind enough to bring to Melbourne in Nagano, Japan under the guidance of epilepsy to a more suitable name. framed pictures, beadwork, calligraphy Dr Park (Korea), Dr Marshall (Taiwan), and clothwork created by the people with Dr Kubota (Japan) and Dr Mehndiratta Regional Committees Meet epilepsy who are supported by the club in Shanghai. (India). The idea behind the awards is to Regional congress provide a great opportu- encourage people with epilepsy not be nity for IBE Member associations to meet

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Denise Chapman (Australia), 1 Secretary of the IBE Western Pacific Regional Committee, chats with Hubert Barennes, a French doctor working Laos.

Anchor Hung, Hong Kong, 2 explains the change to the Chi- 5 nese word for epilepsy.

Mrs Ms Li Ying Yi, Hong 3 Kong, receives an Outstanding Person with Epilepsy Award from Mike Glynn, IBE Presi- dent.

Robert Cole (Australia), Chair 4 of the IBE Western Pacific Regional Committee with Man Mohan Mehndiratta (India) 6 Vice Chair of the IBE South East Asia Regional Committee.

Participants attending the 5 Service Practitioners Forum, hosted by Epilepsy Victoria.

IBE Members from the South 6 East Asia and Western Pacific regions attending a joint meet- ing of the committees.

Presentation of the Outstand- 7 ing Persons with Epilepsy 7 Awards.

International Epilepsy News 5 Activities in the PAHO Region Carlos Acevedo In conversation with Hanneke de Boer

Since when have you been working in the field of epilepsy in Chile? I first joined the Chillean League Against Epilepsy in 1983 and became a member of its board in 1987. Subsequently I had the opportunity to start developing plans and participate in activities related to quality of life of people with epilepsy in Santiago, the capital of Chile. At that point in time Main photo: Carlos Acevedo with the Chilean League was only active in his wife Keryma against a back- Santiago. In 1988 I became President of drop of Santiago de Chile. the association. Right: Hanneke de Boer asks the questions In that the same year we managed to bring all local and regional Leagues in the country under the umbrella of the Chilean "membership of the international organisations League and a national association was literally opened borders for us" founded. Its membership included doctors as well as non-medical professionals and people with epilepsy. In 1998 a national The most important event that followed Have there been any recent association, ANLICHE, was founded, from this was the organisation of the 1st Global Campaign activities in the which became a Full Member of the Inter- Latin American Epilepsy Congress, which region? national Bureau for Epilepsy in 1999. was organised by the IBE Latin Ameri- During the past few years involvement of can Regional Committee and the ILAE A new epilepsy association, the Chilean PAHO in the region has increased to a Regional Commission with the involve- Epilepsy Society, with the participation great degree with the arrival of Dr Jorge ment of PAHO and WHO Headquarters. of the most important epileptologists in Rodriguez, PAHO/AMRO Regional Ad- The Regional Declaration on Epilepsy Chile, was founded in parallel in 1988, visor for Mental Health and Neurological was developed and the now annual Latin and became the ILAE representative in Disorders. Dr Tarun Dua, WHO was also American Epilepsy Day was inaugurated Chile. Both the Chilean Epilepsy Society involved. Recent activities include: on 9 September 2000, when the Presi- and ANLICHE, like the Bureau and the dent of Chile read the Declaration to all zz In 2008 the Latin American Regional League, are working closely together and participants. Since then six further Latin Report on Epilepsy was launched in Hon- the Presidents and Secretary-Generals of American Epilepsy Congresses have been duras; each organisation are also members of the organised by the IBE Latin American Re- sister-organisation. zz A workshop on epilepsy was organ- gional Committee and the ILAE Regional ised, which also led to the initiation of the Before that we had worked only at national Commission. Demonstration Project in Honduras; level; membership of the international or- Would you consider this to be zz A further workshop on Mental Health ganisations literally opened borders for us. the start of GCAE activities in and Neurological disorders, including What did this development mean the region? epilepsy, took place in Santiago, Chile. for you personally? One of the main activities carried out During the 6th Latin American Epilpesy During the 23rd International Epilepsy under the auspices of the campaign in the Congress a meeting was organised involv- Congress in Prague in 1999 I was ap- Latin American region was the successful ing stakeholders in the region: IBE and pointed by Philip Lee, then IBE President, Demonstration Project in Brazil, which ILAE Presidents, Latin American IBE/ as the Chair of the new Latin American was completed in 2005. In addition, ses- ILAE vice-presidents, representatives of the IBE Regional Committee. Soon after- sions on Global Campaign activities in Global Campaign and of PAHO with the wards I became involved in the ILAE/IBE/ the region were organised at each regional aim to develop a strategic epilepsy plan for WHO Global Campaign Against Epilepsy. congress. the Americas. 6 International Epilepsy News Activities in the PAHO Region Carlos Acevedo In conversation with Hanneke de Boer

What is the significance of this strategic plan document and the importance of its approval? I believe the significance is threefold: 1. The entire process in developing the document strengthened the relationship between PAHO/AMRO and IBE/ILAE; 2. This procedure and this document may be a model which can be used in the other regions of the world; 3. The document will lead to a com- mitment of all countries in the region to develop a national plan for epilepsy, based on the national realities. All countries will be obliged to submit an annual progress report to PAHO/WHO. This entire process was initiated under the auspices of the Global Campaign and followed Goal 4 of the Strategic Plan of the Campaign’s Taskforce: to increase partnerships and collaboration with other organisations. This process involved the following two neces- sary actions: The aim of this plan is to have epilepsy is being circulated within PAHO for an included as a health priory for the next 10 internal review. The PAHO Director will zz Organisation of a regional meeting years by the regional leadership of PAHO, assess the document in March and it is to be during a regional congress. which involves the Ministries of Health of expected that she will approve it. However, zz Development of an action plan and all member states in the region. This would the Director may make some recommen- setting up a task force in each country, be the first time that epilepsy was consid- dations, which will have to be dealt with. comprising the Chairs of the IBE Latin ered a priority in the 100 years of PAHO’s The working group will have a final review American Regional Committee and the existence. in order to do so. ILAE Regional Commission, the local In the months between November 2010 Finally, the document will have to be representative of PAHO and a delegate of and February 2011 several drafts of this translated into English, Portuguese and the Ministry of Health. strategic plan have been prepared and French and should be posted on the We have done just that and now we are circulated in North-, Central- and Latin PAHO website and available to all by the keeping our fingers crossed and hoping America. This activity was co-ordinated end of April. In September, during the that it will work for the Americas and, if it by Dr Rodriguez of PAHO, Marco Tulio Annual Meeting of all Health Ministers does, for all regions of the world! Medina - Honduras (ILAE Vice President from the Americas, which will take place Latin America) and myself (IBE Secretary in Washington DC, the document will, General and Vice President Latin American hopefully, be approved. Regional Committee). It is usual for a procedure for approval During this period five meetings have such as this to take a minimum of at least taken place (in Argentina Chile, Guate- a year to accomplish. However, in this mala, Honduras and Panama) organised case the entire process went extremely fast by PAHO with important contributions and took just four months, thanks to the from the ILAE North American Regional determination and enormous efforts of all Commission. At present the document those involved. International Epilepsy News 7 and hosted by Gay Mitchell, an national health systems; Irish Member of the European Par- • that research and legislation liament (MEP). Using the theme remain key issues in improving Finally, 'The Many Faces of Epilepsy' Euro- quality of life of persons with after some years of discussion and pean Epilepsy Day 2011 aimed to epilepsy. six months of frenetic preparations, highlight to MEPs and European Two main activities had been European Epilepsy Day became Commissioners: planned, a Lunch Discussion and, a reality in Europe on the feast of • that epilepsy remains a hidden later in the evening, a reception to th Valentine, Monday 14 February. disease due to stigma; mark the official launch of an exhi- To celebrate this great occasion, • that it is a treatable disease yet bition highlighting the facts about almost 50 representatives from 26 up to 40% of people in Europe epilepsy and the problems faced by IBE member associations in 20 who have epilepsy do not receive people with epilepsy. countries travelled to Strasbourg appropriate treatment; Speakers at the lunch discussion to participate in special activities • that lack of treatment imposes included Hanna Mathes and David on 15th February, organised by IBE a huge financial burden on Josephs, who spoke very movingly

8 International Epilepsy News European Epilepsy Day becomes a reality in Strasbourg

The Louise Weiss building, one of the two main European Parliament Buildings in Strasbourg. Photo: Ann Little Turn the page for more photographs from the launch.

of their experiences of living with in order to do so. Although other tatives in the European Parliament, epilepsy and caring for a child with commitments prevented his atten- providing the ideal opportunity for epilepsy, respectively. Many of the dance, EU President Mr Jerzy Buzek MEPs to learn about the difficulties MEPs present remarked on how sent a letter expressing his support for faced by people with epilepsy in their touched they were by these remark- the initiative. own countries. able presentations. Other speakers In addition, a small delegation A total of 56 MEPs and two EU included Alexis Arzimanoglou, a attended very significant private Commissioners participated in Euro- child neurologist from Lyon, France meetings with Mr John Dalli, pean Epilepsy Day - a figure of which and Tarun Dua from the WHO. Commissioner for Health and other NGOs would be very envious! Gay Mitchell acted as host. Family Policy and with Mrs Máire The launch of a European Advocates The Many Faces of Epilepsy exhibi- Geoghegan-Quinn, Commissioner for Epilepsy special interest group was tion was officially opened by EU for Research, Innovation and Science. announced in Strasbourg, as well as Vice President, Edward McMillan- Throughout the day, IBE member a European Declaration on Epilepsy. Scott, who excused himself from representatives attended personal We will bring you more news as these chairing a very important meeting meetings with their national represen- are initiatives are developed.

International Epilepsy News 9 1

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European Epilepsy Day Captured on camera

Cover Photograph: John Dalli, Commissioner for Health and Consumer Policy accepts a souvenir plaque from Mike Glynn. Inset: Maire Geoghegan-Quinn, EU Commissioner for Research, Innovation and Science, with Mike Glynn. A very impressive line up!: Eighteen of the 56 MEPs who participated in celebrating European Epilepsy Day line up 1 against a backdrop of the Many Faces of Epilepsy poster exhibition. Meeting with Commissioner Dalli: Attending the private meeting with Mr John Dalli, Commissioner for Health 2 and Consumer Policy are, from left, Victoria Dimech, Member of the IBE European Regional Executive Committee; Janet Mifsud, IBE Vice President Europe; Nico Moshé, ILAE President; Commissioner Dalli; Mike Glynn, IBE President; Emilio Perucca, ILAE Treasurer; and Ann Little, IBE Executive Director.  e delegation arrives: Arriving at the parliament are, from left, Richard Holmes, IBE/ILAE International Director of 3 Meetings; Aisling Farrell, Vice Chair of the IBE European Regional Executive Committee; Ciaran Du• y, Enterprise Ireland; Tarun Dua (speaker), WHO; Soš a Kasradze, Georgia; Alexis Arzimanoglou (speaker), France; and ž anos Covanis, Chair of the IBE European Regional Executive Committee.

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IBE Member representatives: Back row from left, Daniel Kiss, Hungary; Margaretha Andersson, Sweden; Caroline 4 Morton, ; Anne Soehnel, Germany. Front row: Eva Teysslerova, Czech Republic and Helena Schwarz, Germany.

5 The Many Faces of Epilepsy: Vice President Edward McMillan-Scott launches the poster exhibition, which ran in one of the principal walkways in the Strasbourg Parliament building from 14th to 16th February.

A group of Irish MEPs: Four of the nine Irish MEPs who attended the events in the Parliament, pictured with Mike 6 Glynn. From left, Sean Kelly, Máiread McGuinness, Gay Mitchell, Mike Glynn and Jim Higgins.

A full house for lunch: The 70+ people who attended the lively Lunch Discussion are welcomed by Gay Mitchell. To his 7 immediate left is Hanna Mathes, Germany, who gave a compelling account of her life with epilepsy. David Josephs, UK, also spoke movingly of caring for a son with severe epilepsy.

8 Rehearsal dinner: IBE members gathered for dinner on the evening of the 14th February, for final preparations in advance of activities in the parliament the following day.

9 Raising awareness with Finnish MEPs: Reetta Kälviäinen, Finland, speaks with Mr Hannu Takkula and Mrs Sari Essayah, two of four MEPs who attended the Lunch Discussion.

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International Epilepsy News 11 Thank You!

IBE would like to extend its very sincere Higgins, MEP, who was Questar for the countries who made, at times arduous, thanks to all those who lent to the success exhibition. European Union Vice Presi- journeys to be with us in Strasbourg. And of the first European. A little like the dent Edward McMillan-Scott opened the we mustn't forget the many activities or- Oscars, there are so many people to thank, exhibition for us, excusing himself from ganised by IBE members at national level. that we fear someone might be overlooked! another meeting which he was due to A final thank you goes to the Commis- First we must thank Gay Mitchell, who chair. For this we are also grateful. sioners, their members of cabinet and to acted as host to the events in Strasbourg. Our Lunch Discussion speakers made the 56 MEPs, listed below, who agreed to Gay's assistant Gráinne Delaney provided a huge impression on MEPs attending, private meetings, and who came along to a enormous level of support to the IBE of- so thank you to Hanna Mathes, David learn about epilepsy and to meet with their fice and also assisted in setting up meetings Josephs, Tarun Dua, and Alexis Arzimano- constituents. with Commissioners Geoghegan-Quinn glou.We would like to thank all those IBE Thank You All! and Dalli. We would also like to thank Jim member representatives from 20 different

COMMISSIONERS Mariya Nedelcheva Jim Higgins SLOVENIA Máire Geoghegan-Quinn, Antonyia Parvanova Joe Higgins Tanja Fajon Commissioner for Research, Kristian Vigenin Seán Kelly Jelko Kacin Innovation & Science FINLAND Mairead McGuinness SWEDEN Gay Mitchell John Dalli, Sari Essayah Gunnar Hökmark Commissioner for Health & Satu Hassi ITALY Alf Svensson Consumer Policy Ville Itälä Niccolò Rinaldi Marita Ulvskog Anneli Jäätteenmäki Oreste Rossi UK MEMBERS OF CABINET Eija-Riitta Korhola Giancarlo Scottà Edward McMillan-Scott Philippe Cupers, DG Research Hannu Takkula Marco Scurria Peter Skinner and Innovation Sirpa Pietikäinen Iva Zanicchi Catherine Stihler Karl Freese, DG SANCO FRANCE Keith Taylor MEPs Nathalie Griesbeck Simon Busuttil Glenis Willmott AUSTRIA GERMANY David Casa Ulrike Lunacek Peter Liese Louis Grech Angelika Werthmann GREECE Edward Scicluna BULGARIA Marietta Giannakou NETHERLANDS Iliana Malinova Iotova HUNGARY Lucas Hartong

Andras Gyürk Lambert van Nistelrooij eed INTERNATIONAL Iliana Ivanova EUROPEAN EPILEPSY DAY LEAGUE Krisztina Morvai AGAINST Ria Oomen-Ruijten EPILEPSY Ivailo Kalfin ES TA B L I S H E D 1 9 0 9 IBE Andrey Kovatchev IRELAND Wim van de Kamp POLAND Filip Kaczmarek Pat the Cope Gallagher Jacek Protasiewicz Marion Harkin Adam Siekierski Czeslaw The impressive courtyard of the Louise Weiss parliament building in which the European Epilepsy Day activities were held. Photo: Michael Alexa

12 International Epilepsy News Congratulations Lynn!

Don't Miss Out! IBE sends it best wishes to The closing date for entries to the IBE Golden Jubilee photo Lynn Savill, who was awarded competition is now only weeks away. an MBE in Queen Elizabeth's New Year's Honours List, for With a prize fund of US$7,000 this is a great chance for anyone her dedicated voluntary work with a camera (or mobile phone) and a good eye for a photo for people with epilepsy. Lynn opportunity to win one of the six prizes on offer. All details on founded the Gravesend Epilepsy the competition are available on the IBE website Network more than 30 years ago, when www.ibe-epilepsy.org/jubilee/jubilee-photo-competition. her daughter was diagnosed with epilepsy following an accident. An exhibition of Epilepsy Without Words will be mounted at The Member of the Order of the British Empire (MBE) is the 29th International Epilepsy Congress in Rome at the end awarded to individuals for outstanding service to the community of August, when the prizewinners will be announced. that merits public recognition. Lynn was presented with her MBE medal by Prince Charles.

Epilepsy Simplified

John Paul Leach MD Rebecca O'Dwyer MD Simon Shorvon ISBN: 978 1 903378 73 1 receives Lennox Award Published December 2010

Dr Simon Shorvon, University College of London, was This recently published book is intended to act both as a recently awarded the William G Lennox Award for 2010. stimulus and guide for everyday management of epilepsy for Dr Shorvon is a leading authority on status epilepticus all clinicians treating patients with this condition: neurologists, and is also editor of the ILAE journal Epilepsia. GPs, doctors in training, hospital pharmacists, primary care Dr Shorvon was among the first to conduct studies physicians, nurses and nurse practitioners. documenting the treatment gap for people with epilepsy John Paul Leach and Rebecca O'Dwyer, neurologists based in in the developing world. Among many contributions Glasgow and Washington, have produced this work to make to the field are his creation of the world’s first MRI unit the process of diagnosing and treating epilepsy as accessible as dedicated solely to epilepsy research; extensive research on possible, and to debunk the myths around this common neuro- antiepileptic drugs; and, studies of prognosis, mortality logical disorder. Drs O'Dwyer and Leach have produced a very and life expectancy in epilepsy. readable summary of their experience and knowledge, which will The Lennox Award is conferred by the American Epilepsy benefit both doctors and people with epilepsy alike. Society and the Lennox and Lombroso Trust for Epilepsy Price: £30; US$59.95; EUR 45; softback; 182pp; Research and Training. To order: visit www.tfmpublishing.com

International Epilepsy News 13 Harry Meinardi recounts more of IBE's history

lthough the IBE was con- There the first Constitution of IBE was agreed ceived in 1961 in Rome upon during a meeting on September 15th 1966 it was delivered at its first at the Schloss Hotel, Grünerwald. The following formalA meeting on Thursday, officers were elected: th September 4 1965 in Vienna. President and Chairman of the Council: In 1965 IBE is still an informal • Mrs Ellen Grass, USA organisation; however by 1966 a Vice Presidents: small office is established on the • Dr Amparo Arcaya, Chile premises of the British Epilepsy • Dr Mogens Lund, Denmark Association (BEpA) at 3-6 Albert • Dr Karl-Axel Melin, Sweden Place, London WC1. Mrs Isabel Little, formerly personal secretary Treasurer: of George Burden at BEpA, left • Miss Irene Gairdner, England BEpA to become half-time secre- Secretary General: tary of IBE and to take care of the • Mr George Burden, England day-to-day running of the office. In the Constitution, provision was made for each The next important step took place during the corporate member (a national state organisation 10th World Congress of the International Society or institution) to nominate a representative to for Rehabilitation of the Disabled in Wiesbaden the Council. he newly elected President gave the Germany. following message:

Presidential Message “Lord, have mercy on my son, for he is an epilept and he suffers terribly; for often he faIls into the fire and often into the water. And I brought him to your disciples, and they could not heal him.” (Matthew 17: 15-16 Revised Standard Version of the Bible.) These two simple sentences, written centuries ago, justify an International Bureau for Epilepsy, and point the direction for its programme. First, mercy for the epileptic1 is asked. Let this not be construed as maudlin pity, for pity alone fast burns out and achieves nothing. Further, handicapped2 persons prefer to be respected for what they can do, rather than be accorded special privileges. Our mercy should find expression in skilfuIly planned reha- bilitation, educational and vocational programmes that produce useful citizens.

1965 - 1969 Second, the verse points out “he suffers terribly.” True, the convulsion itself seems tortuous to the beholder - often the stricken family - but the epileptic1 is mercifully unconscious. His suffering comes later, during the days dreading the next attack and the shame of coming to. Even worse is the ostracism from school, from companionship, from employment and often from marriage. Affording relief from this suffering through an enlightened programme of social education is certainly a major province of the Bureau. Third, Matthew says, “and they could not heal him.” If one reads further, Jesus then explains why his disciples were unsuccessful and he himself shows them how to cure the boy. Clearly the medical man- agement of seizures is the province of our aIly, the International League Against Epilepsy. But jointly, we should encourage research and urge the training of many more specialists in neurology and epilepsy, so that the benefits of modern concepts of seizure control can extend throughout the world. I have assumed the task of guiding the Bureau in these early years with great misgivings as to my worthiness to serve. I am consoled, however, by the zeal and enormous abilities of the officers who have graciously consented to work by my side. We shaIl count heavily on the guidance of the International League as weIl. We welcome your suggestions on programmes and procedures, and our sincere wish is that you will communicate with us fully and often. With warm greetings. Ellen Grass, President Look Back with Pride Look 14 International Epilepsy News One of the special meetings at the congress General of IBE (receiving a salary com- Austrian and Swiss sections of the ILAE. in Wiesbaden was organised by IBE and mensurate with this). As IBE had started Furthermore he visited the Belgian social its topic, appropriately, was Epilepsy and its activities as a guest of the BEpA it also organisation called Les Amis de la Ligue Insurance. moved in 1966 with that organisation Nationale Belge contre l’Epilepsie and a In Newslettter No 11 a profile of the from 27 Nassau Street, London W1 to its leaflet in Portuguese was prepared to assist elected president was presented by Irene new location at 3-6 Alfred Place, London in the setting up of an association in that Gairdner. In the following issues 12, 13 WC1, but from 1968 onwards IBE started country. and 14 the profiles of the vice-presidents to pay for space and services. In this period In 1968, assisted by a grant from the Brit- 3 Mogens Lund, Amparo Arcayo and Karl- Mrs Little , who was expecting a baby, ish Commonwealth Foundation, the Sec- Axel Melin were sketched. resigned and Astrid Weld (presently Astrid retary General visited Nigeria and Ghana Gregor-Weld) took over from her as full- in January and again in December (when Extracting the 1965-1969 history of IBE time executive secretary. from its Newsletters we notice that a apparently he also other Commonwealth standard item in these letters were reports To highlight how IBE fared in the period countries but these are not mentioned by about who came to visit the office. Such under consideration it is best to summarize name). In September the Secretary General lists may have helped readers to realize the quadrennial report that was presented took part in a seminar on Epilepsy in who and where other persons interested by the Secretary General to the General Africa, which was held in Marseilles. in the care and rehabilitation of people Assembly. Now with IBE well established it is good with epilepsy were to be found. A similar In its earliest years meetings organised by to remember that at first there were many function was served by reports of the peri- IBE were part of congresses of other organ- doubts about its viability. In order to offer patetic Secretary General George Burden. isations. In 1965 the meeting on Epilepsy some insight into its growth the report The most authoritative summary of activi- and Driving Licences was held during the to the General Assembly presented an ties is obviously his quadrennial report to 8th International Congress of Neurology. overview of the increase in correspondence the General Assembly. However, integral In 1966 IBE met at the 8th Congress of the produced in 1965, versus the output in reproduction would cause this overview to International Society for Rehabilitation of 1968, showing that the total output had exceed by far its permitted length. the Disabled in Wiesbaden; here the first more than doubled and in particular The office of the IBE in its early days Constitution of IBE was formally adopted. personal enquiries, advice and cases had thrived because of the generous assistance A special meeting of the Wiesbaden quadrupled. of the British Epilepsy Association, which congress was held in Heidelberg and dealt IBE membership at the time of the 1969 allowed their employee George Burden with Epilepsy and Insurance. In 1967 the General assembly was: and his personal secretary Isabel Little to first independent European Conference • 22 National and State Associations, spend half of their time on IBE business. on Epilepsy (called Institute following an • 21 Institutions But now that IBE had been established it American example) was organised together • 54 Individual Members was time that it should also “hold up its with the French ILAE chapter in Paris. In • 18 ILAE members (chapters) by virtue nd own trousers”. 1968 the 2 European Institute was held of the inclusive subscription agreed at in Dunblane, Scotland. (H.M.: It is inter- A grant from the International Society for the onset. esting to note that the International Bureau The report of the Secretary General also Rehabilitation of the Disabled (ISRD), for Epilepsy, named its meetings “European”!) made possible because of an anonymous had a section “The Shape of Things to donor in USA, created the financial situa- In 1969 IBE and ILAE both held their Come” which space does not permit to re- th tion in which this became feasible. Thus it meeting/congress as part of the 9 Inter- produce. However, in the next issue of this was in the early months of 1966 that Mrs national Congress of Neurology in New overview, you will be able to read about Isabel Little, who had wanted to relinquish York. the The Shape of Things that Came in the her full-time appointment with the BEpA Not only did IBE organise meetings: as period 1969 – 1973. in favour of a part-time appointment, be- part of establishing IBE as the interna- came the first salaried staff member of the tional umbrella organisation of national Notes: Bureau on a half-time basis. Her appoint- organisations or individuals caring for 1. While usage of the term 'epileptic' as a pronoun ment was reflected in immediate progress the social aspects of epilepsy the Secretary to describe a person with epilepsy was common in developing the membership and in General travelled widely. At the end of parlance in the 1960's, such usage is no longer acceptable. The acceptable term is 'a person with formulating a Constitution. 1965 he visited Canada, the USA, New epilepsy'. st Zealand, Australia, Thailand, India, Greece On 1 January 1969 George Burden 2. Likewise, the word 'handicapped' is now also and Italy. resigned from the post of General Secre- frowned on. It is preferrable to say that the person tary of BEpA to remain half-time with that In 1966 he took part in the launch of an 'has a disability'. organisation as Director of their newly Irish Epilepsy Association. In 1967 the 3. Isabel Little is still involved in the epilepsy field established Information Unit. At the same Secretary General took part in meetings as a Vice President of the English charity Epilepsy time he was appointed half-time Secretary- of the German League and of the joint Research UK.

International Epilepsy News 15 EPILEPSY AT SCHOOL: TEACHING THE TEACHERS Educational Plan of the Associação Brasileira de Epilepsia Report by Laura Guilhoto

Children with epilepsy suffer prejudice at Brazil is the largest developing South The areas with greater improvement in school which is responsible for much of American country with a population of knowledge between phases 1 and 2 were, the stigma in adult life. Teacher’s knowl- 190 million. “First-aid during an epileptic seizure”, fol- edge about epilepsy can have a direct lowed by “Activities of PWE”, and finally Teachers play a fundamental role in the impact regarding school and social achieve- “Concepts and definition of epilepsy and acceptance of diversity and the fight ments and consequently, employment its causes” and “Treatment and adverse against discrimination, and as they are and networking in adult life. Despite the effects of antiepileptic medication”. In not well informed or trained regarding important role of educators, little research the topic “Popular stigma about epilepsy” epilepsy, Associação Brasileira de Epilepsy has been under- taken in this field there was a decrease in the number of cor- (ABE), IBE’s Member in Brazil, proposed anywhere in the rect answers after the lecture. an intervention program in elementary world. schools in Sao Paulo State, called “Epilepsy at School: Teaching the Teachers” - one of the programs selected for IBE Promising "Teachers play a Strategies funding in 2008. fundamental role The program comprises a lecture with in the acceptance simple didactic visual resources on the fol- lowing aspects of epilepsy: of diversity and 1. basic aspects of brain anatomy; the fight against 2. definition; 3. causes; discrimination 4. epidemiology; 5. diagnosis; The topics “popular stigma” and “first aid 6. treatment; during seizures” had the lowest correct 7. first-aid during a seizure; scores in phase 1 (CC+VC), 74% and 8. psychological and social 72%, respectively. The highest gain in consequences; phase 2 was observed in “First aid” and the lowest (0.1%), in “Popular stigma”. There 9. false myths on epilepsy; was a significant variation in “First aid” in 10. Global Campaign Against CC, 41% compared to VC, 33%. Epilepsy. There was an overall improvement in A questionnaire was developed by ABE knowledge after the lecture. The area most experts with 35 true or false questions impacted was “First-aid during an epileptic on the following: seizure” which rose from 71 to 89% of 1. Concepts, definition and causes correct answers between phases 1 and 2. of epilepsy; This probably reflects the low knowledge 2. Treatment and adverse effects of of first-aid care in the general popula- antiepileptic medication; tion due to stigma. Another area of great 3. Epilepsy stigma; impact was “Activities of PWE”, which 4. Activities of people with epilepsy had 88% of correct answers in phase 2. In (PWE); these two areas the information was prob- 5. First aid during and after a seizure. ably easier to learn because the principles were transmitted as true “rules” based The questionnaire was presented to either on scientific or legal aspects. teachers before the lecture “Epilepsy: Causes, Symptoms and Treatment” given The topics “Concepts and definition of ep- by a health professional from ABE (phase ilepsy and its causes” and “Treatment and 1) and again afterwards (phase 2). The lec- adverse effects of antiepileptic medication” ture was given either through classical live showed good improvement but somewhat class (CC) or video-conference (VC). inferior to the previous mentioned areas. This may reflect the broad range of defini- Mean of correct answers in phase 1 in CC tions and treatment options for epilepsy. was 78% and VC, 79% and in phase 2 in CC, 86% and VC, 86%, reflecting increased The poor results in phase 2 observed in the knowledge in phase 2 in both strategies. topic “Popular stigma about epilepsy” may

16 International Epilepsy News Excellence in Epilepsy Journalism Awards 2010 Winners Announced

he winners of the 2010 Excellence were tasked with identifying responsible, in Epilepsy Journalism Award have original and informed stories that were just been announced. well structured and researched, built on a T foundation of responsible reporting and The award, a joint initiative of the IBE and the UCB, aims to raise awareness about that gave a voice to people with epilepsy. epilepsy across the globe by recognising The winner of the Print category was journalists who have excelled in reporting Makiko Tatebayashi for her article Let’s compelling and informed stories that en- Know Epilepsy, which featured as a seven- gage the audience on the topic of epilepsy. part series in the Japanese newspaper IBE President Mike Glynn, an award Yomiuri Shimbun. judge, commented: Jessica Solodar was the win- “This year’s Excellence in Epilepsy Journal- ner of the Online category Seizures trig- ism Award saw an increased number of for her article gered by video games: Under- entries, with the overall standard being estimated and undiagnosed particularly high. A total of 43 entries Jessica Solodar from 17 countries were submitted, ranging which was posted on the web-site epilepsy.com. (pictured above), from messages of hope to moving personal award winner of accounts, which shows that the message on Winner of the Broadcast the Online epilepsy is united across the globe. category was Niamh category. "We congratulate and thank all journalists Maher, producer of the The winner of the “This Is Me” who submitted entries for their dedication , for her doc- Print category “Not Out” to responsible and educational reporting umentary , award was Makiko on epilepsy.” which was broadcast on Tatebayashi Radió Teilifís Éireann 1. (pictured left). An independent seven-member judg- ing panel, made up of of media experts and people with experience of epilepsy,

have been caused by: • Companhia de Seguros Aliança do Brasil; 1. inadequate questions; • Secretaria da Educação do Estado de 2. difficulties of health professionals São Paulo, Brazil. to transmit information in a simple Acknowledgements: and direct way to lay people. 1. Heloise Martins, Marcos Vidal-Doura- We also noted difficulties in understanding do, Erika Almeida, Sueli Mesquita, Carlos differences between the terms “to cause” Tavares, Katia Lin, Veriano Alexandre and “to predispose” the occurrence of an Jr., Elza Márcia Yacubian, Alzira epileptic seizure. Castro, Alice Masuko. 2. Adriana Mendonça, Maria In conclusion, we observed that teachers Helena Martins, Marcos Galvez, in the Elementary Schools surveyed, had Marluce Camarinho, Natalina basic knowledge on epilepsy, which could Mateus, Rose Jurjuck., be improved after the lecture. There were 3. Carlos Luque. no significant differences between types of 1. Associação Brasileira de presentation (CC/VC), although CC was Epilepsia (ABE, Oficial Brazilian more efficient in teaching first aid during Chapter of the International Bureau seizures. Popular stigma about epilepsy for Epilepsy) knowledge has not improved after the 2. Secretaria Estadual da Educação do lectures and this subject needs further re- Estado de São Paulo; Brazil, search and efforts for better understanding 3. School of Economics, Business and Account- and action planning. ing at the University of São Paulo, Brazil. Support: References • International Bureau for Epilepsy Guilhoto LMF et al. J Epilepsy Clin Neuro- (Promising Strategies Program 2008); physiol 2010; 16(2):80-86. International Epilepsy News 17 Colombia Introduces Epilepsy Law New legislation protects persons with epilepsy

Dear Friends Pictured from left: Jaime Fandiño-Franky, Senator Manuel Virgúez, who was instrumental in bringing about the introduction of the new legislation in Colombia, and Roberto Cadavid, a It’s with great joy that I send you a copy of lawyer who also worked on the campaign Law No.1414 of 11 November 2010 signed and ratified by the President of the Republic, So what exactly will it mean for people treatment, GP and specialised care, and Juan Manuel Santos. There is no doubt of the with epilepsy in Colombia? The simple access to support groups. Recognising the benefit of this law. Now we must regulate it, answer is that it will mean a lot - on the importance of the carer or family group, but it is a law and enforceable. Colombia has assumption that the law will implemented these will have access to education, as well pioneered the world in intorducing human correctly. as assistance in accompanying the person rights legislation for the 800,000 people with epilepsy living in Colombia. The wording of the law We will send this law document to Stras- bourg, where the Court of Human Rights states that healthcare of the European Union and Human Rights will be continuous and Watch is based, so that people with epilepsy in Colombia will have an international permanent for all court to which appeal, if our country does not comply with the law. persons with epilepsy I ask you to promote this law and make it known to lawyers, judges, teachers, councilors, The objective of the students, in fact, to everyone. law is to guarantee the protection and With best wishes care of persons with Jaime epilepsy. The legisla- tion recognises that This joyous message was sent to IBE at with epilepsy in the role of guardian. the beginning of this year by Dr Jaime epilepsy is a chronic disease characterised Fandiño-Franky, who, together with his by recurrent seizures and rules that safe- Rehabilitation is recognised as a process of colleagues at FIRE and the Colombian guards be put in place to ensure compre- limited duration, with a defined objective, League Against Epilepsy, had toiled for a hensive care to include education; preven- directed at guaranteeing that the person long time to see the introduction of legisla- tion; early detection to prevent physical with epilepsy attains optimal physical, tion in favour of persons with epilepsy in and mental complications; and diagnosis mental, social and functional levels. Colombia. It had been a long an arduous and treatment (including surgical interven- The law demands the absence of barriers road and, on more than one occasion, im- tion, medication, and rehabilitation). that might prevent the person with epi- pediments had appeared, just as the finish The wording of the law states that health- lepsy from receiving the necessary health line was in sight. But, finally, it was time care will be continuous and permanent for and social services that would assist in to celebrate as the law entered the statute all persons with epilepsy with the aim of his or her integration into quality family, books on 11th November 2010. identifying appropriate multi-disciplinary social or employment environments.

18 International Epilepsy News The law prohibits acts of discrimination, in treatment and to guarantee the fundamen- the right to be sufficiently informed on the any form, against the person with epilepsy. tal rights of persons with epilepsy. different aspects of the condition, and to It states that to complement the principal The national government is legislated receive accurate and detailed information, of solidarity, society in general, organisa- to establish strategies for international through all appropriate means. tions, institutions, the family and, in cooperation, in order to facilitate adoption Persons with epilepsy are protected against addition, specialised national and inter- of this law, and to implement mechanisms all forms of exploitation and discrimina- national entities, will participate in joint that will allow the development of strategic tory rules or abuse. activities to promote, educate and protect projects with other states to promote Young people with epilepsy, who are eco- all persons with epilepsy. comprehensive treatment for persons with nomically dependent on their parents, will epilepsy, so that they can count on the have the right to benefits from the Health The legislation states power and technical assistance of ILAE, Service System. This will be of tremenous the Colombian League Against Epilepsy, benefit to people with epilepsy whose that the Colombian the Foundation for the Rehabilitation of families refuse, for whatever reason - be it Persons with Epilepsy (FIRE), the national stigma or poverty - to seek medical help National Government Academy of Medicine and Neurological, and care for their child with epilepsy Neurosurgical and Paediatric Neurological The Ministry for Social Protection, in col- will safeguard the associations. laboration with the Ministry of Education, dignity and human The statute goes on to state that the Health will design a special programme to educate Regulation Commission will be required GPs in the early detection of symptoms rights of all persons to include epilepsy in its benefits plans, which could indicate a neurological condi- following the adoption of guidelines and tion such as epilepsy. with epilepsy protocols to ensure that medication and While much of the text of the law refers health services necessary for this condi- to the rights and protection of persons More importantly, the legislation states tion are available. The Ministry for Social with epilepsy, there are also references to that the Colombian National Government Protection will also be required to take the the obligations of perons with epilespy to will safeguard the dignity and human necessary actions to ensure that the objec- society. One of these states that a person rights of all persons with epilepsy and pro- tives of the law are met. mote conditions to ensure equal rights for with epilepsy who refuse to accept treat- Persons with epilepsy, without distinction, ment prescribed by doctors will not be persons with epilepsy in laws, liberty and will have the right to life, to equality, to opportunities, without discrimination. allowed to undertake dangerous activities work, and to human and health dignity. that could be a risk to society. To achieve the objectives of this law, in Epilepsy will not be considered as an im- particular to accomplish the principle of plement to prevent integration and access It is, perhaps, too early to know successful solidarity, health authorities will imple- to work, sports, or schooling in just and or well implemented this legislation will ment awareness programmes for the pub- dignified conditions. Persons with epilepsy, be. But we can congratulate Jaime and his lic, to promote education, prevention and their families and the community will have colleagues on their great acheivement.

IBE-ILAE Task Force in Europe The new IBE-ILAE Joint Task Force met recently in to lay down plans and objectives and to set its agenda for future activities. This taskforce will serve as the political and advocacy arm of the IBE European Regional Committee and the ILAE Commission on European Affairs; promoting From left: Janet Mifsud (Malta), Hanneke de Boer (Netherlands), Emilio epilepsy care across the European region, defending Perucca (Italy), Mike Glynn (Ireland), Asla Pitkänen (Finland), Christian the social integration of persons with epilepsy, and Elger (Germany), Michel Baulac (France) and Reetta Kälviäinen (Finland) facilitating Epilepsy Research funding. Its targets in the European Union and Europe will be: the EU Parliament and the EU Commission The task force should also benefit non EU countries in Europe and contribute to Global Campaign activities throughout Europe . The group is co-chaired by Mike Glynn and Emilio Perucca, with Aska Pitkänen serving as Secretary and Hanneke de Boer as Treasurer. The first tasks to be addressed are a review of EU funding opportunities available for research and the setting in motion of premliminary arrangements for European Epilepsy Day 2012.

International Epilepsy News 19 International Bureau for Epilepsy 1961 - 2011 20 International50 years focussed Epilepsy on epilepsy News