NEWSLETTER OF THE INTERNATIONAL BUREAU FOR EPILEPSY - ISSUE 1 2012 INTERNATIONAL Epilepsy News BUMPER ISSUE: FOCUS ON AFRICA VISIT TO TOKYO 9th AOEC MANILA President's Note Africa and Asia two exciting meetings! In March, the IBE Management Com- the recent publication in North America mittee held a meeting in Tokyo, en route of the Institute of Medicine’s report on to the 9th Asian and Oceanian Congress epilepsy means that epilepsy is now on in Manila. This meant that we were able the map more than at any time before. To to attend a symposium marking the first ensure that IBE remains at the forefront of anniversary of the dreadful tsunami and this work, the IBE International Executive ast year marked my first visit to earthquake in northern Japan. It was really Committee will have its 2012 meeting in Africa, when I was the guest of heartening to hear about all the great work August this year. the Zambian Epilepsy Association that the Japanese Epilepsy Association and Land was amazingly well looked after by With best wishes to all their ILAE colleagues were able to do for IBE’s Vice President for Africa, Anthony the people with epilepsy affected by the Mike Glynn Zimba and all his colleagues. Due to this, disaster. President I am looking forward enormously to the th very first African Epilepsy Congress to be The 9 AOEC in Manila proved a great held in Nairobi, Kenya in June 2012. The success; it was very well attended with additional challenges people with epilepsy excellent sessions, including a great IBE in Africa face, such as lack of access to di- Epilepsy and Society day. One of the high- agnosis and treatment, Neurocysticercosis lights was the great social evening which and the still widespread fear of infection, was widely acknowledged as one of the mean there is huge work to be done there best anywhere, ever! by IBE. This 1st AEC and proposed new Following on from the success of the Global Campaign initiatives in Africa will PAHO initiative in Latin America and the be major steps in this work. Caribbean, and the European Declaration, INTERNATIONAL RELATIONS ISSUE 1- 2012 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 A bumper issue full of interesting news! You can also enjoy a report from the 9th Epilepsy Association to raise awareness, Asian & Oceanian Epilepsy Congress in the results of the Excellence in Journalism Manila, which was attended by over 1,400 Award 2011, and a special anniversary is delegates, who enjoyed an excellent meet- celebrated in Ecuador. ing and a wonderful welcome from the Finally, we bring you the news that the local people. Institute of Medicine report on epilepsy am sure that the moment you picked Recently, the latest projects for funding has now been published and with impor- up this issue, you realised that some- under the Promising Strategies Program tant recommendations. We look forward thing was different! To celebrate the were selected. In this issue we introduce to reporting more extensively on this in 1Ist African Epilepsy Congress, we decided you to half of the new projects. We have the next issue. to include a special report on IBE in the so many reports to share with you that we African region. So you will be able to enjoy Kind regards have had to hold the second half until the reading about the work that many of our next issue! Dr Carlos Acevedo 20 members in Africa are undertaking. Editor Harry Meinardi presents us with the next The magazine is also full of other news and instalment of IBE's history. I would like to articles. The IBE Management Commit- thank Harry, again, for the wonderful and tee spent a few days in Tokyo, attending a interesting articles he has written for us. special Memorial Symposium on the anni- versary of the earthquake and tsunami. We From Canada, Mary Secco sent us a report also met with the local association and left on a summer camp that welcomes children the city with some wonderful memories of with epilepsy; we hear about a Fun Run the kindness and dedication of everyone in Taiwan, as well a special postage stamp we met in Japan. that has been designed by the Taiwan Contents 1 President's Message 23 Wacky Wednesday's Summer 27 IOM Report on Epilepsy is 2 Editor's Letter Camp published 4 Promising Strategies 2012 24 Memorial Symposium, Tokyo 28 Looking Back with Pride 10 Stamping its Mark! 26 A Meeting with Akari 30 Manila Memories 11 Winning Stories 27 Running to Stand Up For Epilepsy 12 IBE's Focus on Africa 30 12 24 10 13 11 27 International Epilepsy News 3 PROMISING STRATEGIES The IBE Promising Strategies Program is now 6 years old and is • Is a strategy2012 that can be used to generate policies and initiatives one of the most successful and innovative of all IBE's initiatives. to address systems issues and common problems impacting Set up in 2006, as a means of supporting IBE members through people with epilepsy and their families the provision of financial support for projects aimed at improving • Is likely to be implemented in collaboration with other strategic the quality of life of people with epilepsy, to date 70 projects in 37 partners and has a mechanism to evaluate results and get countries have received a total of US$300,000 in support. feedback to continue to improve the program. A Promising Strategy is one that has the potential to foster effective More than fifty applications were received following the latest and innovative public health practice with regard to epilepsy. call for letters of intent. The applications were reviewed by the Ideally, a Promising Strategy contains many of the following: relevant Regional Executive Committee, with their recommenda- • Is based on measurable, realistic, time specific objectives and tions presented to the International Executive Committee. A total is need-based and data-driven of 20 new projects, in 19 countries, were then selected by the International Executive Committee for funding this year. • Is innovative in developing new solutions to common problems impacting people with epilepsy and their families In this issue you can read about 11 of the latest projects. The next issue will include information on the remaining nine projects. • Establishes a strategy that makes a difference in improving accessibility to accurate, timely, necessary and culturally Information on all 70 projects, funded to date, can be found on appropriate information or services the IBE website, where you can also find further information on funding criteria. The next call, for projects to be considered for • Demonstrates a sustainable effect in the community where funding in 2013, will be circulated to IBE member association in it is being implemented and has the potential for replication September 2012. elsewhere in similar environments The Other Side of Epilepsy THE OTHER SIDE OF EPILEPSY campaign of APДE will introduce an innovative way to focus on target groups in order to break stereotypes and epilepsy stigma. Lavender (the plant and its colour) are symbols of the campaign. The initiative will involve representatives from various community groups who are affected by epilepsy: TARGET GROUPS: 2 Parents of children with epilepsy and parents of healthy children; 2 Teachers and students; 2 Journalists from national and regional media. The objectives of the campaign are: i) to raise awareness about epilepsy by generating positive media reports - provided in an interesting and engaging way; ii) to inform the various target groups on how to recognize and how to cope with epilepsy - providing information about treatment, symptoms and control BULGARIA of epilepsy; iii) to train health journalists from national media; iv) to stimulate dialogue with state institutions, in order to encourage an active state policy for epilepsy; v) to main- tain constant media interest in the campaign; and vi) to improve public awareness of epilepsy, eliminate stigma and generate positive attitudes in society towards those suffering from epilepsy.