NEWSLETTER OF THE INTERNATIONAL BUREAU FOR EPILEPSY - ISSUE 3 2011 INTERNATIONAL Epilepsy News Epilepsy & Sport GCAE in Georgia A wedding in Nepal President's Note Looking back on a successful year! in the Americas for the next 10 years – for Nairobi in 2012 to which IBE is providing the first time in PAHO’s 100 years history. bursary funding of US$20,000. In all, IBE In Asia, many IBE member associations has committed up to $50,000 for the 1st have been successful in changing the nega- AREC. Plans for the congress are already tive symbols for epilepsy, which had been well underway and information on the sci- used for hundreds of years, to more positive entific program and bursaries can be found ’s Golden Jubilee year is language symbols. This will be very impor- on the congress website. Likewise, next now coming to a close tant in reducing stigma. year will see the Asian Oceanian Epilepsy and we can look back Congress held in Manila, the Philippines, atIBE a year of many great achievements. In Among IBE’s Jubilee projects were the one of the poorest countries in Asia. Europe we celebrated the launch of the 1st very popular Epilepsy Without Words Other initiatives for 2012 include the 2nd European Epilepsy Day in the European photography competition; publication of European Epilepsy Day on 13th Febru- Parliament in February; creation of the Eu- a concise history of IBE; as well as other ary and Latin America Epilepsy Day on ropean Advocates for Epilepsy of MEPs in activities during the congress in Rome. 9th September. China and other Asian April; and approval of the European Writ- Further funding was provided to members countries will celebrate their International ten Declaration on Epilepsy in September. in less well-off countries for initiatives to Epilepsy Day on the 28th June. There will increase the quality of life of people with In Latin America and the Caribbean, also be a further round of Promising Strate- epilepsy, bringing to 50 the number of in September, to our delight, the Latin gies and many other events are in the early projects now funded and with more than American Strategic Plan of Action on stages of preparation. Epilepsy: PAHO/ILAE/IBE Project for the US$250,000 funds invested by IBE. Wishing you best wishes for the New Year. Americas was approved. This tremendous This year, IBE and ILAE took the historic achievement will see epilepsy as a priority in decision to hold the first ever African Mike Glynn the national health plans of each country Regional Epilepsy Congress (AREC) in President INTERNATIONAL RELATIONS ISSUE 3- 2011 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). � Tomás Mesa (Latin America) International Bureau for Epilepsy � Lisa Boylan (North America � HV Srinivas (South East Asia) 11 Priory Hall, Blackrock, SPONSORING PARTNERS � Robert Cole (Western Pacific) Co Dublin, Ireland. Advisors: E: [email protected] IBE acknowledges the support of its � Mike Glynn T: +353 1 210 8850 partnering sponsors listed below. Please � Grace Tan contact us if you would like to learn about www.ibe-epilepsy.org � Abdulaziz Al Semari sponsoring opportunities with IBE. � Shunglon Lai Gold Partner � Susanne Lund All rights, including moral rights, reserved. No part � Janet Mifsud of this publication may be reproduced, stored in a � Dainippon Sumitomo Pharma Co., Ltd � Lilia Núñez-Orozco 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 advice; they are not Other Partners � Sam Wiebe intended to replace medical care. � Cyberonics 2 International Epilepsy News Editor’s Letter Another busy issue for you to enjoy! the WHO, members of local authorities as Finally, we include the departure of a good well as several politicians. friend, John Gilbert Kirker a great man in the social field of epilepsy both in Ireland Meanwhile, Executive Director of IBE, and at international level. Mrs Ann Little, travelled to Sofia in Bulgaria, at the invitation of the Bulgarian In closing, may I take the opportunity to his issue of IE News features an Full Member, to present in the Bulgarian wish you all a very Happy New Year. extensive report on the roundtable Parliament, during a workshop meeting event held in Brussels in Novem- dedicated to promoting the European Kind regards, berT at the European Parliament, with the Written Declaration on Epilepsy. Dr Carlos Acevedo participation of MEPs, the IBE/ILAE Editor Epilepsy Advocacy Europe Joint Task We also have hints about initiatives in Force and a large number of other partici- Indonesia, Mauritius and a special article pants. During this event sporting heroes from Nepal. As always a pearl is the story with epilepsy gave personal testimonies of of IBE from 1993 to 1997 prepared for us life and sporting successes. by Harry Meinardi. In October in Tblisi in Georgia, an impor- It is essential to mention the beautiful tant demonstration project came to an end letter of Patsy McCall, IBE Executive after four years of work, with two days of Director from 1979 to 1985 sent to us activities. Participants included the main at the time of the International Epilepsy authorities of IBE/ILAE, representatives of Congress in Rome.. Contents 1 President's Message 10 Look Back with Pride: Part 4 17 European Epilepsy Day 2012 2 Editor's Letter 12 Seminar in Mauritius 18 Workshop in Bulgarian 4 Epilepsy and Sport 12 News on Congresses Parliament 7 Australian Neurologist awarded 13 IE News Jubilee Award 19 Letter from Patsy McCall 7 Indonesia receives EEG system 13 Par Epi Publication 8 Remembering John G Kirker 14 A New Life for Juneli! 9 PCDH19 Gene Mutation 16 Global Campaign in Georgia 13 10 4 410 13 16 14 International Epilepsy News 3 Epilepsy & Sport European Parliament hears compelling stories of athletes who complete at international level in spite of a diagnosis of epilepsy "I hope I can provide a little insight and Austrian MEP, who is a member of the and the European 20-20 Championships. perhaps a little of my understanding of European Advocates for Epilepsy Group. She is now a level 2 cricket coach, and epilepsy or, in Harry Potter terms, the Mrs Werthmann stated: "Six million about to become a level 2 hockey coach. ‘dark arts’." people are diagnosed with epilepsy in Her latest sport is Kick Boxing. Thus Emma Beamish began a personal, the European Union, although the real Emma is currently studying at Queen’s moving and, at times, amusing account number could be much higher - nobody University, Belfast, to become a teacher. of living with epilepsy. The venue was knows, since the social stigma is enor- On the day Emma spoke in the parliament the European Parliament in Brussels and mous. Parents, in particular, are afraid of she was also celebrating her 29th birthday. Emma was one of three international the social disadvantages for their children Emma's passion in life is sport and she told sports people who also happen to have and therefore keep the diagnosis a secret. I us that nothing had ever come between her been diagnosed with epilepsy. believe it is up to us to open dialogue and and her sports. Her parents had provided The Roundtable event, which took place to strongly support and encourage people fantastic support to her, which allowed her on 29th November in Brussels, had been affected by epilepsy also to open up." to have a life the same as everyone else: organised jointly by the European Advo- Emma Beamish, Ireland, is an Irish In- "They set the tone; I never knew anything cates for Epilepsy special interest group of ternational Cricketer who has represented was wrong. I was lucky that my parents MEPs (Members of the European Parlia- Ireland at the highest level, participating provided a support that I didn’t know ment) and the IBE/ILAE Joint Task Force in the 2005 Cricket World Cup in South existed. There was a net there. But this is a Epilepsy Advocacy Europe. Hosting the Africa. She was a member of the Irish team condition where you cannot wrap people event was Mrs Angelika Werthmann, an that won the European Championships up in cotton wool. 4 International Epilepsy News "It is very lonely dealing with something My doctor told me that no one can explain to you. This is why that any physical I call it the ‘dark arts’. It’s there but you exercise was out of can’t see it until it’s too late." the question and es- pecially forbade any I started with small goals; I sort of endurance would walk the dog every day. sports! He did very well out of this arrangement Georg Thoma, Germany, Emma talked openly about periods of is a marathon runner, who anger and fear, of frustration and depres- has run all over the world sion.