NEWSLETTER OF THE INTERNATIONAL BUREAU FOR - 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

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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 . of living with epilepsy. The venue was knows, since the 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. She told how, at times, she would feel and has even run a mara- extremely low. But she also talked about thon along the Great Wall how she found her way back into life of China. He undertakes thanks to psychological help and daily step distance races for charity, by step goals she set herself: "My epilepsy including a 630km long has never held me back; it’s just made charity run across Ger- things a little bit tougher, but then nothing many. worthwhile was ever easy. In his presentation, Georg "I started with small goals; I believe my talked about how he was first goal was that I would walk the dog very frightened before every day. He did very well out of this undergoing brain surgery, arrangement!" thinking how his head would be cut open. Now Emma explained how her entire lifestyle he is delighted that he had had to change to allow her to compete at the surgery as it has allowed the top level in sports. She realised that him, finally, to achieve a she needed at least eight hours sleep each -free life. night, to eat a healthy diet, and to avoid stress. She also had to ensure that she took Georg told how he had Photo above: MEP Mrs Angelika Werthmann, who hosted the her medication as directed to keep her realised lifelong dreams and, Roundtable event in the European Parliament in Brussels 'on the straight and narrow': "I get little like Emma, he also pointed Photo opposite page, from left: Asla Pitkänen, Georg Thoma, reminders every now and again if I don’t out the need to 'open the MEP Gay Mitchell, Jérôme Becher, Emma Beamish and Mike keep to the path," she explained. eyes' of society about the Glynn. Photo: Martin Lahousse true facts on epilepsy. Photo below left: French MEP Mrs Nathalie Griesbeck meets Her request to society is for openness: to Jérôme Becher. Photo: Magdalena Neuner stop speaking about epilepsy quietly in Jérôme Becher, Germany, holds the Guinness world corners and to start speaking openly about to do open water competitions, which are record for the longest uninterrupted swim the condition. Emma believes that this is held in lakes in Germany due to lack of (80km) as well as the European record in the only way to make it 'normal' to have open sea. I started winning 5km and 10km 24-hour swimming. Aged 32 years, he is a epilepsy and by speaking openly, the ripple events, won some German championships physical therapist by , and runs effect could be tremendous. and simply enjoyed my life without having his own rehabilitation centre. epilepsy handicap me. At this point, of "I had my first seizure in April 1989 - I course, there was no more hiding my secret was ten and I still remember it very clearly. activities from my neurologist! It helps of It was a Monday and my brother and I course if you can present some solid results were on our way to swimming practice. that the sport was not aggravating my Life changed completely that afternoon: condition but instead stabilizing me. My doctor told me that any physical exer- Having a seizure at 2 kilometers cise was out of the question and especially offshore creates a somewhat forbade me any sort of endurance sports!" more difficult problem then After his diagnossis of epilepsy, with the collapsing during a marathon great support of his parents, Jérôme con- on solid ground tinued with his sports activities, and began "I never think about the problems with to set himself bigger and greater sporting epilepsy during races. It’s before each race goals - although his neurologist was kept that I have to ask myself if I can do it in the dark! without risking my health. And swimming "My mother accompanied me to every isn’t the most preferred sport in neurosci- practice. I swam more and longer dis- ence – having a seizure at 2km offshore tances; I ran more and longer distances. creates a somewhat more difficult problem The one thing we didn’t do was to tell my then collapsing during a marathon on neurologist about my sporting efforts." solid ground." He has run 15 marathons, with a fastest Today Jérôme is committed to improving time of 3 hours and 8 seconds: "I started the situation for people with epilepsy, by International Epilepsy News 5 increasing public awareness. He explained general and in particular the economic and anyone else, apart from a diagnosis of epi- that people might have the false impres- social burden of epilepsy. While 25 differ- lepsy, and that epilepsy is not something to sion that epilepsy isn't a severe disease be- ent epilepsy genes have been identified and be hidden from view. cause they can see that he is in perfect con- despite the high number of anti-epileptic In addition to Mrs Werthmann, other trol of his life. However, he adds that this drugs available, up to 40% of people with MEPs who attended the event included is because he has found the self-confidence epilepsy will still have . There is Irish MEP Gay Mitchell, who is President and support to accept his condition and to still no cure for epilepsy. Because of this, of the European Advocates for Epilepsy generate motivat-on to live all aspects of Dr Pitkänen emphasized the necessity to Group; fellow Irish MEP Sean Kelly, who his life with more awareness: "That’s why I expand epilepsy research in order to close also spoke at the International Epilepsy have become an ambassador to bring more the huge diagnostic gaps, to reduce side Congress in Rome at the end of August; self-confidence to people with epilepsy and effects of medication and to work towards and French MEP Nathalie Griesbeck, a those close to them, to people who are not a situation where everyone with epilepsy member of the European Advocates for open enough to talk about it, who are even will have, at least, total seizure control or, Epilepsy Group. A number of MEP's ashamed of their condition, people that at best, a cure. Assistants were also present. don’t get the support they need. Mike Glynn, Ireland is IBE President, Several people travelled long distances to "Standing here in this special place is the Co-chair of the IBE/ILAE Epilepsy Advo- attend the roundtable event in Brussels, very proof that epilepsy is something we cacy Europe task force and Chief Executive either representing epilepsy associations or ought to talk about and accept and to Officer of Brainwave The Irish Epilepsy because of a personal interest in Epilepsy. give everybody the chance to live their Association. The Hungarian IBE and ILAE associa- life without fear or discrimination. It is Mr Glynn referred to a number of inter- tions were represented by Dr Judit Jerney, our task to bring those people hope and national rugby players who have epilepsy, while Dr Janet Mifsud who is a member support. We can show them that epilepsy including former Scottish player Tom of the joint task force is from Malta. The is the last reason why they shouldn’t live a Smith, who is now a rugby coach. In his furthest distance was travelled by Claudia rich and satisfying life." view, parents must encourage their chil- Schlesinger, Chief Executive of Enlighten Dr Asla Pitkänen, Finland, is Professor of dren to become involved in sports, despite Hong Kong! Not only had she travelled Neurobiology at the University of East- the diagnosis of epilepsy. all the way from Hong Kong, she had also ern Finland and Secretary of IBE/ILAE Helping a child with epilepsy to live as done so with her foot in plaster due to - Epilepsy Advocacy Europe task force. She normal a life as possible, including playing yes you've guessed it - a sports injury! is also a member of the ILAE Commission sports with their peers, is important for Pictured below are some of the participants on European Affairs. two reasons - firstly in helping the child and speakers to the Epilepsy & Sport Round- Following the speeches of the three sport- with epilepsy to develop self-confidence table event in the European Parliament in speople, Dr Pitkänen presented on the and self worth and, secondly, to send a Brussels. Standing next to Mike Glynn is medical aspects of epilepsy, the enormous clear signal to the general public that most MEP Sean Kelly (wearing a red tie). burden that chronic diseases constitute in people with epilepsy are no different from Photo: Martin Lahousse

6 International Epilepsy News Australian Paediatric Neurologist receives Major Award

Professor Ingrid Scheffer was recently lated her in 1995 awarded the Asia-Pacific L’Oréal-UNESCO when, as a result For Women in Science Laureate for 2012. of her work with horse,’’ she says. The award, which carries a prize fund of University of Melbourne collaborator Prof $100,000, was bestowed in recognition of Sam Berkovic, the first epilepsy gene was In fact, at least one-third of people with her vital work, over a period of 20 years, in discovered by a team at Adelaide’s Wom- the condition have inherited it from a par- establishing the genetic basis for epilepsy. en’s and Children’s Hospital. ent; have received genes from each parent that, when added together, predispose Looking back to when she first began her Professors Scheffer and Berkovic, who are them to epilepsy; or, because of a muta- research for her PhD on families with based at Austin Health, have led the world tion, have the first genetic-based case in epilepsy, few people believed that her work in their field since then and, of the 25 epi- the family. would achieve any significant outcomes. lepsy genes now known to exist, the pair IBE extends warm congratulations to Pro- “The neurogeneticist I worked with has been involved in the discovery of 13. fessor Scheffer on a well-deserved award! laughed,’’ Professor Scheffer remembers “People used to think epilepsy was caused with a smile. But he warmly congratu- by a hit on the head, a scar, a kick from a

Indonesia receives first digital video-EEG system with thanks to Rotary Clubs in Japan and Indonesia

hanks to the collaboration of suke Kawai of the University of Tokyo and system, activities in several fields including the Rotary Foundation and Professor Zainal Muttaqin of Dr Kariadi public awareness campaigns on epilepsy, Rotary International Districts General Hospital. exchange visits of doctors and nurses for 2580 and 3400, activated On November 3rd, a ceremony of celebra- and exchange of medical and byT Tokyo Asakura Rotary Club and the tion and academic seminars were held at clinical information are being planned. Rotary Club of Semarang Sentral with Dr Kariadi General Hospital, to which all This joint program, titled “Toward better nine Rotary Clubs in Indonesia, the first doctors, staff members and Rotarians in understanding and treatment for epilepsy digital video-EEG system was introduced charge were invited. The digital video-EEG in Indonesia”, is a trial of the “Future recently to Indonesia at Dr Kariadi General system will serve for the development of Vision Plan – Global Grant Projects” of Hospital, Semarang. epilepsy diagnosis and mark a milestone the Rotary Foundation and is the result of The project was supported through the for epilepsy care in Indonesia. Following sponsorship from the foundation and from cooperating partnership of Professor Ken- the introduction of the digital video-EEG all Rotarians.

Photo from left: Mrs Maria Susanti, President, Rotary Club of Semarang Sentral; Mr Mitsuo Makino, Past President, Tokyo Asakusa Rotary Club; Mr Yukuya Tomii, Immediate Past President, Tokyo Asakusa Rotary Club; Prof Kensuke Kawai, Dept of Neurosur- gery, Univerity of Tokyo, Japan; Prof Zainal Muttaqin, Dept of Neurosurgery, Dr Kariadi General Hospital, Semarang, Indonesia; Mr Bambang Wibowo, President Director of Dr Kariadi General Hospital; Mr Mo- hamad Ridlo Eisy, District Governor, Rotary Club of Semarang Sentral; Mrs Ritje Rihatinah, Past District Governor, Rotary Club of Semarang Sentral; and Mrs Ekawati Sudjadi, Past President, Rotary Club of Semarang Sentral.

International Epilepsy News 7 In Memory

John Gilbert Kirker 1922-2011

following the death of the • Chair, Commission on Driving of incumbent President, to IBE 1989 - 2001 complete the term. • Organiser of the IBE Driving & During his illustrious Epilepsy Workshops, Brussels 1995 he was Chairman & 1996 of the Medical Educa- • Chair of the Scientific Advisory Com- tion Committee, Medical mittee, 22nd International Epilepsy Council of Ireland and Congress, Dublin 1997 was directly responsible • Founding Member of Brainwave the for the development of Irish Epilepsy Association (IBE Mem- electroencephalographic ber) and the Irish League Against services in Ireland. He Epilepsy (ILAE chapter) remained at the forefront He was also a serving member on the 2nd of EEG reading and European Working Group on Epilepsy & epilepsy practice for more It is with great sadness that IBE learned of Driving - advisory board to the European than half a century, up to his in the death of Dr John Kirker on Monday Union – at the time of his death. This the late 1990s. 14th November. At the time of his passing working group was influential in the intro- after a short illness, at the age of 89 years, Of course, Dr Kirker’s career stretched far duction of the European Union Directive he was still President of Brainwave The beyond the shores of Ireland; Irish Epilepsy Association, a role he had he was also a strong supporter held with great diligence since 1982. of the International Bureau Dr Kirker was born in Norfolk, England for Epilepsy over a period and studied medicine at Trinity College of more than 30 years and Dublin and at the Royal Victoria and City worked with passion on Driv- Hospitals in Belfast. ing Commissions for many years. After completing his , he travelled to the US to undertake a fellow- In 1974, Dr Kirker received ship in the newly developed technology his first IBE/ILAE award – of (EEG) with the Ambassador for Epilepsy the renowned , Dr William Award. More recently, in Gordon Lennox at Boston Children’s 2007, he was awarded the Hospital (1948-1949), and with shorter Social Accomplishment in periods working with Dr Frederick Gibbs Epilepsy Award during the in Chicago and with Dr Herbert Jasper in 28th International Epilepsy Montreal - both pioneers in EEG record- Congress in Singapore. ing. His work at international Dr Kirker was a consultant physician at Sir level, on behalf of people Patrick Dun’s Hospital (a general hospital) with epilepsy, includes: and St Patrick’s Hospital Dublin (a psychi- • Serving as a representa- atric hospital) and lectured in pharmacol- tive on the Advisory ogy at Trinity College Dublin. In 1956 he Committee on Medical was made a Fellow of the Royal College Training of the European Union in epileptology of Physicians of Ireland (FRCPI) and was Portrait of Dr John G Kirker by James Hanley to commemo- • Member of the Organis- its first Director of Examinations from rate his term as President of the Royal College of Physicians ing Committee to the 1983 to 1985. He served as RCPI Vice of Ireland. The portrait, which hangs in the college, has been 2nd European Confer- President in 1981 and was President from reproduced here by kind permission of the artist. ence on Epilepsy & 1983 to 1985. Dr Kirker served a further © James Hanley and RCPI nine months as RCPI President in 1989, Society, Dublin 1990

8 International Epilepsy News on Driving, a directive that is currently be- that belied his medical background! These didn’t like any sort of fuss. He took the ing implemented by EU member nations would be typed up and dispatched while diagnosis of advanced aggressive cancer across Europe and which will introduce John enjoyed a cup of coffee with us. There and impending death with great fortitude uniformity of legislation in the provision were always some wry comments shared and acceptance, wryly remarking: “I hope I of driving licences to people with con- on a topical subject to bring a smile to the don’t linger for too long and put a damper trolled epilepsy. lips of those within earshot! on everyone’s Christmas!” He didn’t: he Something Dr Kirker never mastered was During the Service of Thanksgiving for had left the world less than a month later; the computer age and the internet, which Dr Kirker following his death, to our but has left the world a better place for is why I had the privilege of meeting him amazement we learned that, just before he people with epilepsy. on a regular basis over a number of years. became ill, his son had presented him with He is survived by his wife Elizabeth, son I first worked with Dr Kirker, as his as- a new Apple computer. We can only guess Stephen, daughter-in-law Fiona, and his sistant, when he was Chair of the Scientific that Dr Kirker was finally persuaded to three grandchildren Tom, Ed and Alice, Advisory Committee for the 22nd Interna- enter the realms of modern communica- who were a delight to him. AL tional Epilepsy Congress, Dublin 1997. tions so that he could Skype his beloved As Chair of the IBE Driving Commis- grandchildren who live in the UK. sion, post the Dublin congress, he would To those privileged to know him, Dr still come to the office for some support Kirker was a kind, compassionate and with his correspondence, handing over gentle man, with a brilliant brain and that letters handwritten in a neat slanted script wonderful sense of humour - and who

PCDH19 Gene Mutation in Baby Girls

he PCDH19 gene mutation causes Neuro-imaging techniques such as MRI In April 2011, in Italy, the families of some Tsevere epilepsy in female babies. do not show any cerebral alterations. affected girls founded the non-profit orga- Research that began in 2008 has recently This form of epilepsy is often associated nization “Insieme per la ricerca PCDH19” shown that mutations in PCDH19, the with the presentation of mild to severe (Together for research on PCDH19). gene on the X chromosome that encodes mental retardation, sometimes with autistic The primary objectives of the organization the “Protocadherine 19” protein, cause the traits. are to promote and fund scientific research onset of a form of drug-resistant epilepsy The mechanism with which the PCDH19 on PCDH19, and to create a network to in female subjects aged between 3 months mutations determine this clinical condi- connect families in order to support the and a few years. tion is still unknown. Molecular diagnosis exchange of experiences and updates. The seizures, focal or generalized, may be is important to initiate the best treatment For more information and to support accompanied by a fever and often occur possible in the acute phase, as well as for scientific research in this field, please visit: in clusters that can last for several days. prognosis and genetic counseling. http://www.pcdh19research.org. International Epilepsy News 9 Harry Meinardi presents the next instalment of IBE's interesting history

IBE fulfils a need and expands. comparing 1964 and 1973. But this author is constricted to At the end of the 19th Century condi- less than 1,000 words and has to tions for persons with epilepsy ameliorated become more selective. thanks to “Colonies for epileptics.” In the It is 1973, the constitution is 20th century some of these disappeared revised: IBE and ILAE will while others developed into Special Cen- include the other’s President and tres for Epilepsy and new epilepsy centres Secretary General as ex-officio were created. Several are mentioned in the Officers. Honorary Members next issues. can be elected - Dr Ampara Dr Jaime Fañdino Franky reports how the Arcaya from Chile is the first. Colombian League against Epilepsy, and The executive gets an Editor of its supporters, has started of the Newsletter. The Newslet- a rehabilitation institute for persons with ter shall speak for both IBE epilepsy. (Recently he was once again in and ILAE as part of a stepwise the news as, largely thanks to him, the attempt to merge. Therefore President of the Colombian Republic Photo: Floris Meinardi the December issue informs signed in November 2010, law 1414 on about the second Scandinavian “Protección a las Personas con Epilepsia.”) Symposium on Epilepsy, confer- Dr Maurice Parsonage describes a Special ences of the German Section of Centre in York, one of the three estab- ILAE and of the Italian League as well as lished in England in 1972. about the Annual conference of the New The 6th International Symposium on Epi- Zealand Association, and the founding of lepsy is held in the recently opened Wil- the Newfoundland Epilepsy Association in liam Lennox Centre in Belgium. However Canada. the Epilepsy Social Welfare Foundation, Holland establishes CLEO (Commission Victoria, Australia reports in 1973 that National Epilepsy Research). It handles they have closed their residence for persons grant applications for epilepsy research with epilepsy as “today’s thinking is against to be funded both by charities concerned the segregation of people with epilepsy”. with epilepsy and for an equal amount by Now in 2011 the conflict between those Government. who prefer to be amongst kin and kindred The BEA (British Epilepsy Association) and those who urge that communities reports about a study conference on how should be multinational, multicultural to design protective headgear. The Argen- and disregard differences is still on-going tinian League has created an institute for world-wide. integrated care of persons with epilepsy March and June report about travelling with clinical neurological and psychiatric seminars starting in Mauritius, where the services, an office for social workers and National Health Care system wanted to psychologists, and a rehabilitation service. discuss whether buying an EEG-machine Chief advisor is Dr Abraham Mosovich, for epilepsy care was cost-effective. Next indeed the one who proposed the motion stops were in India, which had nuclei of which initiated IBE. epilepsy care and research that were equal June focuses on how to help persons with to the best of the world next to situations epilepsy to take part in society accord- where even the bare minimum standards ing to their capacities and to resist being were not reached. Methods of improve- ostracized for being labelled “epileptic”. ment were discussed. Attitudes towards persons with epilepsy Singapore, Indonesia, Australia, Korea differ by nation, exemplified by official and Japan followed. That Australia was regulations. IBE asks the Council of the included in a tour to update developing European Economic Community to estab- countries about advances in epilepsy care lish driving license regulations common and research was basis for Dave Daly, Pres- to all nine member countries. Worldwide ident of ILAE to accuse George Burden IBE fulfils a need and expands! rules for immigration have improved when of arranging this stop to see his family in 1973-1977

10 International Epilepsy News Look Back with Pride - Part 4 Australia and that money given to promote knowledge about epilepsy was therefore abused. This unfair accusation led to the of George Burden in 1977. A similar accusation about workshops in South America voiced by Dave Daly, had led to a rift with the secretary-general of ILAE, Otto Magnus, in 1972. March brings information about the dis- covery and development of new antiepilep- tic drugs, and a new method of monitor- ing drug levels in body fluids. To obtain information from countries devoid of either Bureau or League members, letters were written to ministers of health. Richard Holmes, since 1974 adminis- trator of the Irish Epilepsy Association, present its profile, as Dublin will be the venue of the IBE/ILAE 8th International Symposium, while next year Amsterdam will host the ILAE 13th Congress/IBE 9th Symposium. Poland, still behind the iron curtain, organises The First European Re- gional Conference on Epilepsy, sponsored by ILAE and IBE. Biofeedback training to control seizures, introduced in 1974 by Sterman et al, is explained and discussed. A review of 20 epidemiological studies, reporting preva- lence’s from 1.5 per thousand (Japan) to 15 per thousand (Africa), asks for more uniform methods and better classification to study epilepsy. Whether residential care with schooling is to be preferred over home and local schooling with expert advice is discussed, as it still is nowadays. The special centres for epilepsy in England and the Nether- lands report a holiday exchange program for their residents with accompanying staff. The editorial in the March 1977 issue is titled “Collective responsibility” stating “There should no longer be a blind trust in authority. A basic body of knowledge can be acquired which will permit the sociation is the first to report the organisa- Photo above: Street scene in the city of individual to decide whether the accepted tion of an annual Epilepsy week. The June Phnom Penh, Cambodia, today. authorities can be trusted.” and September issues discuss the place Photo: Ann Little Gilbert van Wessem reports that, by wearing of epilepsy in medical . Also your Ambassador for Epilepsy badge every epilepsy and are discussed. day communication about epilepsy can be Thirty-five years later, both still merit at- much improved, doing so he had already tention. In September 1977 new Execu- 69 discussions ranging from a few minutes tives were elected; this information will be to several hours. The Calgary Epilepsy As- dealt with in the next instalment!

International Epilepsy News 11 MAURITIUS Educational Seminar for Medical Professionals & Carers Youssouf Noormode, Edycs President, reports

Epilepsy affects more than 25,000 people in Mauritius, including Rodrigues island. A key focus of Edycs Epilepsy Group, IBE's Full Member in Mauritius, is to raise the profile of the organization while increasing both public and professional under- standing and awareness of epilepsy. In partnership with Sanofi Aventis and the Ministry of Health & Quality of Life, an educational seminar on epilepsy for healthcare professionals and carers was launched in November. The seminar, funded by the Currimjee Foundation, was attended by a hundred medical specialists, clinical nurses and social workers from both public and private health care institutions in Mauritius. At the official opening of the seminar, Youssouf Noormamode, Edycs Epilepsy Group’s President, spoke of the critical need to up- date epilepsy knowledge among medical professionals and carers in applying practical tools for aiding epilepsy management. Edycs Epilepsy Group is committed to enhancing the health and well being of people with epilepsy by mobilizing financial and technical Front row, from left Mrs Aikagjee Yasmine, Program Facilitator; Mrs Roubi- resources to meet its aims. nah Isseljee, Edycs Epilepsy Care Administrator; Dr Aumeer, neuropediatrician Back row, left to right: Dr Emilien Gerald, neurologist; Mr Ajay Babajee, The Currimjee Foundation’s CSR (Corporate Social Responsibil- Sanofi Aventis; Dr Sajad Foondun, psychiatrist; Mr Noormohamed Auckbur, ity) Manager, Shafeek Nojib, highlighted the commendable work Program Assistant Facilitator; Mr Anas Mosaheb, clinical nurse; Mr Indiren of Edycs Epilepsy Group in bringing relief and support to the Vyavooree, Health Care Assistant; Mr Paramasiva Chengan, Deputy President epilepsy community. He added that the Currimjee Foundation Edycs Epilepsy Group; Mr Joyvani Rose, reflexologist; Mr Youssouf Noormamode was proud to be associated with the event and would continue to CSK, President Edycs Epilepsy Group

Outstanding Persons with Epilepsy Awards Outstanding Persons with Epilepsy Awards will again be presented during the 9th Asian Oceanian Epilepsy Congress (AOEC) in Manila, The Philippines in March 2012. To encourage young investigators to participate in Each IBE Member in the South East Asian and Western Pacific regions may nominate a recipient, with procedures for selection the 1st African Epilepsy Congress 2012, which takes determined by the member association. Guideline are available to place in Nairobi, Kenya, the congress will support those associations who have not previously participated in the event. attendance for a restricted number of professional The closing date for submitting the names of nominees to the IBE healthcare providers, young researchers and doctors Office [email protected] is 14 January 2012. from Africa. The nominees will be presented with their award by IBE President Mike Glynn on 22 March, 2012 during the Welcome Ceremony. IBE is providing a bursary fund of US$20,000 and It is anticipated that each nominee will receive an element of applications are invited. Please visit the congress financial support to assist their travel to Manila, through bursary website to download an application form and for funding provided from the budgets of the IBE Western Pacific and information on bursary procedures. South East Asian Regional Committees. Congress website: http://www.epilepsymanila2012.org Closing date for submissions is 22nd March 2012. www.epilepsynairobi2012.org

12 International Epilepsy News MAURITIUS Educational Seminar for Medical Professionals & Carers You don’t Youssouf Noormode, Edycs President, reports have to be a IBE Newshound! work together with Edycs Epilepsy Group in creating an enabling environment where people with epilepsy could enjoy their full rights and become fully partici- pating members of the community, despite their health condition. The full day program focused on three topics delivered by Dr Dominique Lam Thuon Mine, neurologist; Dr You just need good S Foundun, psychiatrist; and Dr Gerald Emilien, neu- rologist. These were: writing skills to win ... • and epileptic seizures - global incidence and prevalence and classification IE NEWS JUBILEE AWARD • Epilepsy and Psychiatry Rewarding contributions to IE News • Anti Epileptic Drug Management This special award will reward the best contribution submitted to With the permission of Sanofi Aventis, an educational International Epilepsy News and has been introduced as part of IBE’s slide show ‘Caring for Patients’ with Epilepsy,’ designed Golden Jubilee celebrations and to mark 48 years of IE News, the for healthcare professional training, was shown and quarterly magazine of IBE. copies were distributed to participants. Whether you report on epilepsy at international or local level, on The Action Zone! game, an initiative of IBE supported medical or social aspects of the condition, you could win this great by UCB Pharma, and previously published ‘Research award! Guide in Epilepsy for Professionals’ by Edycs Epilepsy Award Rules Group were also available. • Reports and articles, to be considered for the award, must be The seminar received wide media coverage on TV and submitted by email to [email protected] before the closing radio channels as well as in the printed press. pe_Umschlag3.5.11:ParEpi 3.5.2011 14:14 Uhr Seite 2 date of 31st December 2011. • Articles must be written in English and be the original work of the applicant. Schweizer ische Verein Eltern igung der epilepsiekra nker Kinder EPILEPSIEN IM • The article must be between 750 and 2000 words in length.

Schwei • Photographs may accompany the submission but it is not zerisch e Vereinigun Eltern epi g der lepsiekranke Seefe r Kinder ldstrasse 8SCHULALLTAG4 CH -8008 Zürich T +41 43 488 65 60 Epilep F +41 sien compulsory to do so. 43 488 68 81 im S in chula [email protected] lltag w ww.parepi.ch ParEp ParEpi Switzerland i ist die Elternorg anisation von has just published • IBE reserves the right to publish any article submitted. Fragen, A the second revised ntworten, Info Prize edition of its manual rmationen on epilepsy in the There will be one prize winner, who will receive financial support to school. attend an IBE or IBE/ILAE congress of the winner’s choice, up to The book, which a maximum of US$2,000. The prize funds may not be used for any contains 68 pages, other purpose and must be used before the end of 2013. was updated and

ISBN 978-3 content reorganized-905681-67-3 Award Criteria and is available to order directly from An independent judging panel will judge entries, looking for respon- the organisation. sible, informed and original stories. Entries will also be assessed on the Epilepsien im Schulalltag provides comprehensive following specific criteria. The work: information about epilepsy in school and its impact and also answers questions posed by • Helps increase awareness and understanding of epilepsy and parents. • Gives a voice to people with epilepsy Important topics such as medicine, psychology • Is well researched, compelling, and uses language responsibly and pedagogy are discussed, and the appendix provides useful addresses and references to when writing about epilepsy. literature and movies. The book also provides Remember! support to teachers in their work and in dialogue with parents. Closing Date: 31st December For further information or to order a copy of the Entries to: [email protected] International Bureau book (price CHF 22 including shipping) please for Epilepsy contact the association at [email protected]. Good Luck! 1961 - 2011 50 years focussed on epilepsy

International Epilepsy News 13 A New Life for Juneli! Finance by IBE, cast by NEA, text by Ann Little

Meet Juneli, a young girl from Nepal who and related diseases. Due to a shortage her wedding day and early married life. has epilepsy. Here she is on her wedding of health care centres, sufficient to meet There are two different actors to play the day - pictured second from the left in this needs, the majority of the population has part of Juneli, as she grows from a young beautiful photograph - together with her no access to adequate healthcare. child to a mature and beautiful woman! husband Madhav, her parents and her With this background, the Nepal Epi- Along the way, the young girl Juneli is sister-in-day, as they pose for the wedding lepsy Association (NEA) is completing subjected to strange superstitions, such album. A charming family portrait. production of a short documentary that as a belief that smelling shoes will stop a Or is it? In truth all is not as it seems! will provide a means of raising awareness seizure! She is brought to a witchdoctor, Juneli isn't getting married, in real life through the media. The focus of the docu- her parents believing that this will lead to a she doesn't have epilepsy and none of mentary is on the social stigma of epilepsy, cure. At school she is ostracised and must the people in the wedding shot is related its impact on society, and possible ways of sit apart from the rest of the class. to her. Instead, these are all actors who prevention and treatment of the condition. We see Juneli having a seizure, which is took part in a docudrama made by Nepal After production, the story of Juneli will played most convincingly by the actor, fol- Epilepsy Association supported by an IBE be televised on a number of national tele- lowing tutoring by NEA Vice President Dr Promising Strategies Program grant. vision channels including the government- Hemav Rajbhandari. And now that I have ruined it for you, by owned channel. The documentary will The climax of the film comes when Juneli's telling you how the plot ends, let's return also be shown to local people when they parents persuade her to marry. However, to the beginning and Act 1, Scene 1, Take 1! attend one of NEA's free epilepsy camps her condition is not disclosed, to her Despite the fact that Nepal has a wealth of or its epilepsy clinics, which are based in future husband and his family, by Juneli's cultural and natural diversity, up to 75% Lazimpat, Kathmandu and Dolakha. parents and uncle when the marriage of the country's population of 27 million Filming has been completed and post proposal is being arranged. In a beauti- people are still dependent on agriculture production editing is now underway. It is ful shot, showing the grandeur of Nepal's for a living and a significant percentage of expected that the docudrama will be ready countryside, we see Juneli running to tell people still lives below the poverty line. for use by the end of the year. her future husband about her epilepsy. Similar to the mean, approximately 1% of The film tells the life story of a young Madhav agrees to marry Juneli because she people in Nepal have epilepsy and many girl who has epilepsy, from when she is a has told him about her condition. Then, unrecorded deaths could be due to epilepsy young child, through her school years, to in true film drama fashion, Juneli has a sei-

14 International Epilepsy News Photographs from top of page: • The production of the docudrama involved an entire school, seen here being filmed at the start of the school day • Juneli is taken to see a witchdoctor, in the mistaken belief that he will be able to cure her • NEA Vice President, Dr Hemav Rajbhandari, tutors 'Juneli' in advance of her feigning a seizure • Against a dramatically beautiful backdrop, Juneli runs to tell her future husband that she has epilepsy Opposite page, from left: • Madhav and Juneli on their wedding day, with Juneli's parents and her sister-in-law Photos courtesy of Nepal Epilepsy Association

zure during the wedding ceremony and is taken to hospital. This results in provision of appropriate treatment and medication and soon Juneli's life is turned around. Later, as the film ends, Juneli, now in good health, visits her parents with her hus- band and baby daughter and is able to tell neighbours and relative how well she feels. According to Nepal Epilepsy Association, this docudrama, highlighting epilepsy, is the first of its kind in Nepal and the association is hoping for great things when the film is released. There are also plans to disseminate the film internationally with the inclusion of English subtitles. About the Promising Strategies Program Introduced five years ago, in 2006, the IBE Promising Strategies Program (PSP) provides its less well off members with financial support for projects aimed at improving the quality of life of people with epilepsy. To date, PSP has supported 50 projects in 33 countries around the world, with total financial support in excess of US$250,000. The most recent call for Letters of Intent, for funding in 2012, has recently closed.

International Epilepsy News 15 Global Campaign Project concludes in Georgia

Report by Hanneke deBoer, GCAE Secretariat

miological survey covered over 100,000 inhabitants and educational, social and community interventions were performed throughout the entire population of the city. The project aimed at testing the feasibil- ity of diagnosing and treating convulsive forms of epilepsy at primary health care level. The long-term objective was to inte- grate epilepsy management into the exist- ing primary health care delivery system in rural and semi-rural areas of Georgia in a sustainable manner. On 26 October 2011 a symposium was organised in Tbilisi to evaluate the results In 2005, Georgia's Government of the Demonstration Project after its recognized epilepsy as a national completion and to mark its official closure. problem and included its manage- The symposium had over 150 participants, ment in the primary health care including national and international system. In the same year, the officials, Presidents of IBE and ILAE; a Global Campaign Against Epi- representative from WHO Headquarters lepsy was initiated in Georgia. in Geneva; the WHO Regional Advisor for Studies in Georgia suggested that Mental Health and Brain Disorders; the people with epilepsy are usually WHO country representative; members of withdrawn from society, feel iso- the Demonstration Project International lated and are either overprotected Working Group; officials from various or neglected. Attitudes towards ministries in Georgia; the Netherlands am- people with epilepsy are often bassador to Georgia; and neurologists from negative and most people would Georgia, Armenia and Azerbaijan. object to their children marrying, Otar Toidze (Chairman, Committee of or even playing with, a person Health Care and Social Affairs of the with epilepsy. Georgian Parliament) and Natela Okujava In 2007 the Epilepsy Manage- (President, Epilepsy and Environment ment at Primary Health Care Association of Georgia) opened the event. Main Photo: International symposium and workshop Level Demonstration Project of They discussed the Demonstration Project participants the ILAE/IBE/WHO Global on Epilepsy Care in Georgia and revealed Photo above: Georgia's national TV company inter- Campaign Against Epilepsy was some of the results. Other speakers at the views IBE President Mike Glynn. In the background launched in Georgia. The project Opening Ceremony included: Deputy is Otar Toidze, Chairman of the Committee of Health was carried out in four main Minister of Labour, Health and Social Care and Social Affairs of the Georgian Parliament districts of Tbilisi. The epide- Affairs; Deputy Minister of Education,

16 International Epilepsy News Conclusions Science and Culture; Vice Speaker, Par- Marco Medina from Honduras who • A total of 10,326 people liament of Georgia; Vice Speaker of the presented on the Latin American strate- were screened; 1,859 peo- Academy of Sciences. gic plan of action on epilepsy: a PAHO/ ple screened positive and The ambassador of the Kingdom of the ILAE/IBE Project for the Americas; were identified as possible Netherlands to Georgia, Mr PJ Langen- Jerome Engel jr. from the US discussed cases, of whom 88 were berg spoke about the indirect involve- epilepsy surgery; and Josemir Sander spoke established to have active ment of the Dutch Government in the about premature mortality in epilepsy. epilepsy. Demonstration Project. He was very Finally Solomon Moshé introduced the pleased to hear about the positive impact International League Against Epilepsy; • The prevalence of epilepsy Mike Glynn introduced the International was higher than previously of the project on the Georgian health care system. In the main, participants Bureau for Epilepsy; and Tarun Dua spoke estimated and the treatment about the World Health Organization. gap was substantial, were very positive about the results of the Demonstration Project and the The symposium was followed by a work- • There is a high level of progress in epilepsy care in the past four shop the following day, during which the mortality in the younger age years in Georgia. Principal Investigators of the Demonstra- group (15-19 years). Other speakers included: Alfred K tion Projects in Brazil, China, Georgia and • 422 people are now benefit- Njamnshi, who spoke about epilepsy Honduras reported on the consequences, ting from the intervention and epilepsy care in Cameroon; Li Li outcomes and lessons learnt from the and are receiving subsidized Min from Brazil who discussed epidemi- projects in their respective countries. anti-epileptic drugs. ology and risk factors in Latin America;

European Epilepsy Day 2012 Monday 13th February www.epilepsy advocacyeurope.org or [email protected] for furtherInternational details Epilepsy News 17 Bulgarian Parliament addresses the call of the European Written Declaration on Epilepsy Ann Little, IBE Executive Director, reports

travelled on to Sofia at the invita- implementation of the Written Declara- of epilepsy medication. Mrs Sabeva also tion of Mrs Veska Sabeva, President tion by the Bulgarian Parliament. spoke about the work of her association. of the Association of Parents of Among the special delegates attending Speaking on behalf of IBE, I highlighted ChildrenI with Epilepsy (APДE), the IBE was the Deputy Minister of Health of Bul- the European Written Declaration on Full Member in Bulgaria to speak at a spe- garia as well as representatives from other Epilepsy; Epilepsy Advocacy Europe (the cial Roundtable meeting organised by the governmental departments. In opening the joint task force of IBE/ILAE), the Euro- association in the Bulgarian Parliament. event, the Chair, Ms Desislava Atanasova pean Advocates for Epilepsy Group in the This was a very significant meeting, attend- who is Chairman of the Board of Health European Parliament and the launch of the ed by several important people, and was a to the National Assembly), also welcomed first European Epilepsy Day. It was also direct result of the passing of the European the MEPs who were present at the event. the opportunity to extend renewed thanks Written Declaration on Epilepsy – which Dr S Bozhinova, Dr V Gergelcheva to the 13 Bulgarian MEPs (of a total of was referred to by almost every speaker. and Dr Rashev – members of the ILAE 17) who had signed the declaration. The purpose of the meeting was to seek the chapter in Bulgaria – presented on the The roundtable meeting was also attend- medical side. Dr Lyubomir ed by the National Ombudsman of Bul- Dzhaleva a statistician from garia, the CEO of the national umbrella the main university in Sofia organisation representing disability groups, reported on a number of the CEO of the national Alzheimer asso- surveys conducted on behalf ciation and representatives from a number of APДE; Mrs Annette Ma- of other NGOs in Bulgaria. rinova, a school teacher who There were also a number of parents spoke eloquently about the who spoke passionately about the restric- need to educate teachers on tions on healthcare and the high costs of how to respond to a seizure accessing treament, and on education and in the classroom and on the employment issues. recent government decision Following the presentations and a to introduce healthcare as a lively debate, which the Chair had great subject in schools. A parent difficulty in bringing to a close, the Mrs also spoke movingly of the Atanosova presented a summary of the difficulties in accessing care, discussion as a memorandum of concrete treatment and the enormous steps to improve quality of life of people problems people in Bulgaria with epilepsy in Bulgaria, which will be meet in continuity of supply presented to the relevant ministers, includ- ing Health, Social Services and Education. Main photo: Bulgaria's Parlia- This was a very significant step in follow ment Building in Sofia up to approval of the Written Declaration Top left: Ms Deislava Atana- in September and IBE would hope that sova, second from left, opens other Member States would also organise the Roundtable meeting similar meeting with governments to en- Left: A section of the partici- sure that the calls for action are addressed. pants who attended the event.

18 International Epilepsy News My Dear Friends

As IBE's Golden Jubilee Year draws to a close, we share a letter sent by Patsy McCall to fellow Ambassadors for Epilepsy during the congress in Rome. Patsy received an Ambassador for Epilepsy Award in 1978 and was IBE Executive Director from 1979 to 1985.

To my dear friends and colleagues who larger spectrum of care, celebrate today as Ambassadors for Epi- diagnostic issues and lepsy - congratulations to all of you. May research needs, and I you and the world continue to be blessed continued to organize and re- of his driving privileges by your efforts – and your creation – of a and to write. and continues to work with minimal world without suffering from the causes medication side effects with dignity. The skill and attention to program needs and consequences of epilepsy. that were shared with me by Nyrma J My husband has a condition which his Although I am sad today that I am not Hernandez, Presidential appointee to the physician refers to as a type of seizure present on the occasion of IBE’s 50th Commission from Puerto Rico, continued disorder not yet fully recognized by the anniversary, I am inspired by all of your to feed the passion that I had grown to neurological community. The brand names continued involvement. Some of you may love inside a worldwide movement. of several stock our medi- recall that I was a novice in the epilepsy cine chest. Five years ago, the younger of Somewhere in the midst of these years, I movement, having no personal or profes- my two sons died due to complications of met George Burden, Prof Harry Meinardi, sional linkage until I was asked to write a brain injury. I came to suspect a pattern Francesco Castellano, Prof Dieter Janz and Florida’s Five-Year Plan on Epilepsy. of seizures from his description of nightly an international romance with profes- events that were physically painful. To say that its completion catapulted my sionals, family members and people with exposure to national and international epilepsy from more than 36 nations began I credit a universal being, whom I choose involvement in the field of epilepsy is too for me. to call God, with any contribution I am simple a statement. It has taken me a life- able to make toward our commitment I came to say that I spoke English in mul- time to fully appreciate how such a small to have a world without suffering from tiple dialects. Ultimately being blessed by effort could become the driving force that seizures. May you all be blessed. I wish I marriage to Francesco, I learned another continues to impact thousands of lives in could have been with you tonight. language and came to call Italy my home our small state of Florida. I am privileged and Dr Raffaele Canger a family friend. to have served as organizer and scribe. For many years Hanneke de Boer was my Passionate individuals like Jack McAllister, teacher and my friend and I can never Merle Evanchyk, Leo J Flannery and Dr B repay her for either her time, hospitality Joe Wilder - my first leaders - infused me or the experiences we shared – including with the inspiration and energy that got her car. The wonderful Joop Loeber was me started. Their stories and their commit- my mentor through thick and thin. There ment conveyed to me an element of loving hasn’t been one week in the past 25 years need that moved me to think and organize that I haven’t thought of some of you. in ways I had never experienced. Within the first year of my absence from When I was invited to serve as Deputy Ex- the international movement, my profes- ecutive Director of the US National Com- sional relationship with epilepsy became a mission on Epilepsy and its Consequences, personal one. My brother was diagnosed new-to-me leaders like Dr J Kiffen Penry, and I am proud to say that, although he Dr Richard Masland and Mrs Ellen Grass called me for advice and one referral, with helped me to focus renewed attention on a his wife’s loving care he handled the loss

International Epilepsy News 19 Future Congresses 2012

9th Asian Oceanian Epilepsy Congress Manila, Philppines 22nd - 25th March 2012 www.epilepsymanila.org

1st African Epilepsy Congress Nairobi, Kenya 21st - 23rd June 2012 www.epilepsycongress.org

7th Latin American Epilepsy Congress Quito, Ecuador 14th - 17th November 2012 www.epilepsyquito2012.org

Congress Secretariat: 7 Priory Hall, Stillorgan, Dublin 18, Ireland Telephone: ++353-1-20-567-20 Email: [email protected] 20 International Epilepsy News www.epilepsycongress.org