International Bureau for Epilepsy ANNUAL REPORT 2007 International Bureau for Epilepsy: Bureau for Epilepsy: International Annual Report 2007
2 International Bureau for Epilepsy: Annual Report 2007 Zenebe Zenebe Le Gedlie Damtie,Africa; Philip VicePresident, for them. who those care and with oflife people epilepsy of quality ganisations whose primary purpose is to improve the for national epilepsyorganisations and other epilepsy or- Front row: Back row,fromleft: Committee2005-2009 International Executive Organisation: Our Goals and care. ignorance about epilepsyare everywherethe worldwhereandfear a visionof IBE has Our Vision Hargis, Secretary General.Hargis, Secretary Pacific; Peter Wolf, ILAE President;MartinBrodie, ILAE Acevedo, VicePresident LatinAmerica; Support: encourage co-operationand contact between members. to and potential fullest totheir to develop members existing of tosupport development new members, the
To provide a strong global network to support support to network global astrong To provide Anchor Hung, Vice President South East Asia (inset photo); Athanasios Covanis, Vice President Europe;
To provide an international organisation • • The International Bureau for Epilepsy isin official Status on the Economic and SocialCoun The InternationalBure Abdulaziz Al-Semari, Vice Pres replaced byunderstanding NicoMoshé, ILAE Secretary General; au forEpilepsy issNon-Governmental Or
e, PastPresiden Immediate ident Eastern Mediterranean; Mike Glynn, Treasurer;Carlos Glynn, Mike Mediterranean; Eastern ident cil of the United Nations (ECOSOC) Treasurer; MarySecco,Vice Pres the widest possible audience. and to communicate IBE’s vision, mission and messages to needs of people with epilepsy and those who care for them. understanding and knowledge of how best to meet the and epilepsy of knowledge Education: them. whocare for those and epilepsy with allpeople life of of quality and condition the social improve to IBE exists Our Mission Representation: Representation: Communication: national and international organisations and governments. platform forthe representation of epilepsy in relation to relationswith theWorldHealth Organisation(WHO) To increase awareness, understanding and ganisation (NGO)inSp Shunglon Lai,Vice President Western To provide an international and global To promote the facts about epilepsy t; Susanne Lund, President. President. Lund, t; Susanne to increase awareness,
ident, North America;Eric ecial Consultative
Report from the President
Another year has already passed and I am very pleased to Members, including announce that IBE is moving forward with many positive articles on medical activities and with a strong determination to change con- issues, reports on best ditions for people with epilepsy worldwide. practice, news from 2007 was an exciting and historic year for the International congresses, and the Bureau for Epilepsy as IBE was formally recognised as latest activities in IBE having Special Consultative Status on the Economic and initiatives and activities Social Council (ECOSOC) in the United Nations. As a in which we work non-governmental organisation with consultative status jointly with the Interna- IBE will be able to contribute to the different programs of tional League Against Epilepsy. the UN and to serve as experts and advisors to governments During 2007 the major redesign of the website, which and secretariats. With 50 million people with epilepsy began in 2006, was completed. The site now offers a worldwide I am happy that IBE has a voice in the world wider range of information, with particular reference to community, that our experiences can be used and high- our regional bodies. The successful redevelopment of the lighted in relevant issues. It is also encouraging for every- website is another crucial element in our efforts to provide one working in the field of epilepsy that the word attractive and high quality information. ‘epilepsy’ is being echoed in the halls of the United Nations. The ILAE/IBE/WHO Global Campaign Against Epilepsy Epilepsy might be a sometimes invisible condition, but is perhaps the longest running joint initiative in which we IBE will not be invisible in the fight against prejudice and are involved. In 2007 it celebrated its 10th anniversary. discrimination of people with epilepsy, no matter where in This is a very visual and widespread activity and IBE is the world they live. grateful to the co-Chairs Philip Lee (IBE) and Giuliano This was also the year when IBE announced the winner of Avanzini (ILAE) who are heavily involved in its direction. the first IBE Volunteer Award, which was presented at However there was a sad moment in the campaign during the General Assembly during the 27th International the year with the death of Leonid Prilipko, who had Epilepsy Congress in Singapore in July. The honourable and worked on the campaign at the WHO. Dr Prilipko was worthy winner was Mrs Margaret Fandiňo-Merz from devoted to his work and to the activities of the Global Colombia. She is one of the many hardworking volunteers Campaign Against Epilepsy. His dedicated commitment who campaign tirelessly to improve the quality of life for facilitated the important link between IBE and WHO in people with epilepsy worldwide. IBE is very happy to maintaining the impetus of the campaign. have the opportunity, through the Volunteer Award, to IBE continued its partnership on a number of interesting highlight the efforts made by those often silent volunteers. projects including the Action Zone! Game and the Freedom The IBE/ILAE Ambassadors for Epilepsy and Social in Mind art competition. These collaborations with UCB Accomplishment Awards were also presented during the Pharma have both been very successful and popular. congress in Singapore and IBE congratulates the twelve new Ambassadors and Dr John Kirker, who received the It is by working closely together on a common idea we can bring change for the many people with epilepsy Social Accomplishment Award. Bureau for Epilepsy: International around the world. By strengthening our network, by in- This was the year when a second round of IBE’s successful creasing contacts and building relationships, by sharing Promising Strategies Program was launched, aimed at experiences and developing new strategies, valuable steps improving conditions in the field of epilepsy in developing will be taken to improve the quality of life for people with countries. The Promising Strategy Program has provided epilepsy and those who care for them. funding for almost twenty exciting projects which focus on capacity building initiatives – both through training I would like to thank all those who have contributed to the programs and advocacy projects. great success of the IBE during the year. I thank the mem- bers of the International Executive Committee for all their Early in the year IBE celebrated the launch of the Regional st time and efforts. IBE’s superb office is also an important Committee Eastern Mediterranean, at the time of the 1 element of an efficient voluntary NGO and IBE is very East Mediterranean Epilepsy Congress in Luxor. IBE now fortunate to have Ann Little as its Executive Director. has seven Regional Committees, matching the WHO regional boundaries. Finally I would like to thank each and every Member of Annual Report 2007 IBE who, both individually and collectively, devotes time IBE also enjoyed great growth in membership in 2007 and energy to the epilepsy movement worldwide and I am with ten new epilepsy associations welcomed as IBE grateful for their great dedication and support. members during the year. This is very encouraging and we look forward to working with these new members over the coming years.
The face of IBE is of major importance and I am delighted to note that the IE News, edited by Dr Carlos Acevedo, has Susanne Lund reported on a tremendous amount of global epilepsy President activities and reports in a very attractive way. The maga- zine reflects the great scope of IBE’s work and that of its
3 4 International Bureau for Epilepsy: Annual Report 2007 C C F Restricted fund 786,455 374,448 374,448 1,300,922 786,455 1,324,491 (412,202) - fund Restricted reserve General 11,842 N Income Deferred 14,423 year) N assets Tangible
C Cash at bank and in hand 3,055,551 3,139,474 3,139,474 160,038 3,055,551 185,274 C handCash atbankandin prepayments and Debtors With comparative totals for 2006 Year ended31st December2007 Balance Sheet Financial Report IXED APITAL REDITORS REDITORS URRENT ET ET A C A URRENT SSETS SSETS
AND A : : SSETS
(Amounts falling due within one year) (1,144,302) (1,223,782) (1,223,782) (1,144,302) more thanone (Amounts falling dueafter oneyear) duewithin falling (Amounts R A
ESERVES SSETS
2,110,946 1,675,370 1,675,370 2,110,946 2,096,523 2,075,730 2,075,730 2,096,523 2,110,946 1,675,370 1,675,370 2,110,946 3,240,825 3,299,512 3,299,512 3,240,825 2007 2006 US$
Statement of Income and Expenditure Year ended 31st December 2007 With comparative totals for 2006
2007 2006
US$ US$
INCOME
International congresses and symposia 1,793,322 813,684
Commerce and industry 139,295 125,094
Membership dues 18,009 14,133
Investment income 45,709 50,221
Sale of materials 127 247
Other grants 343,801 213,852
Miscellaneous income 2,047 2,483
2,342,310 1,219,714
EXPENDITURE
Congress expenditure 1,390,084 729,126
Distribution to Paris Congress - 234,863
Administration pay costs 162,465 114,188
Office expenses 33,108 5,783
Printing and postage 14,159 8,133
Printing and postage - International Epilepsy News 27,111 30,974
Travel 57,327 87,966 Bureau for Epilepsy: International
Global Campaign costs 30,000 25,000
Accountancy fees 27,666 10,873
Audit fees 12,000 4,125
Bank charges 2,061 1,027
Rent 29,941 17,945
Promising Strategies Program 30,313 -
Depreciation 7,044 6,539 Annual Report 2007
Website costs 7,396 2,854
EUCARE costs 300,221 213,852
2,130,896 1,493,248
Currency exchange fluctuations (224,162) (198,419)
1,906,734 1,294,829
5 6 International Bureau for Epilepsy: Annual Report 2007 O assets, ofcongress liabilitie proportion International DirectorMeetings of on behalf the of In a of the portion reflect statements financial 2007 The initial term. the of yearsattheend five additional foran extend The on Agreement1 January willautomatically 2005. beginning (IDM) under the terms of an Agreement dated 1 July 2005. Meetings of Director the a International contracted services of engages Bureau for Epilepsy International Congress Financial Information activities. continuing All gainsand losses have been recognis Note: Auditor’s INCOME With comparative totals for 2006 Year ended31st December2007 Account Expenditure and Income
IDM Congress expenses (1,390,084 (729,126) (729,126) 796,145 (1,390,084 148,113 607,837 172,965 Congressexpenses IDM Revenue 1,793,322 (293,714) Creditors prepayments and Debtors bank Cash in 813,684 (792,588) E XPENDITURE PERATING
( DEFICIT
)/ SURPLUS
FOR s, income and expenses applicable to the Bureau is as follows: Bureauisasfollows: to the applicable expenses and s, income ed in theincome andexpenditure acco
YEAR
ssets, liabilities, net revenues and expenses held by the held expenses and revenues net ssets, liabilities, ternational Bureau for Epilepsy. An analysis of the ofthe An analysis Bureau for Epilepsy. ternational This Agreement iseffec (1,906,734) (1,294,829) (1,294,829) (1,906,734) 2,342,310 1,219,714 1,219,714 2,342,310 435,576 (75,115) (75,115) 435,576 unt. The deficitarisessolely from 2007 2006 2007 2006 US$ US$ tive for afive yearterm International Activities 2007
IBE Joined the UN! May 18th marked a special occasion as IBE was formally It is responsible for promoting higher standards of living, recognised within the United Nations as an NGO in full employment, and economic and social progress, for Special Consultative Status on the UN Economic and identifying solutions to international economic, social and Social Council (ECOSOC). health problems; for facilitating international cultural and This important relationship enables IBE to contribute to educational cooperation; and for encouraging universal the programs and goals of the United Nations by serving respect for human rights and fundamental freedoms. as experts, advisers and consultants to governments and to ECOSOC was established under the United Nations Charter the Secretariat. In addition, some of the approved NGOs as the principal organ to coordinate economic, social and can also propose new agenda items for consideration by related work of the 14 United Nations specialized agencies, ECOSOC and may be invited to attend at international 10 functional commissions and five regional commissions. conferences and special sessions called by the UN. To be eligible for consultative status, an NGO must have ECOSOC serves as the central forum for discussing inter- an established headquarters, a democratically adopted national economic and social issues, and for formulating constitution, and democratic and transparent decision- policy recommendations addressed to Member States and making processes. the United Nations system.
New Members Welcomed The applications of six new Full Members and four new Associate Members were ratified by the International Bureau for Epilepsy: Bureau for Epilepsy: International General Assembly during 2007. This brought membership figures to 118 Full and Associate Members working for people with epilepsy in 92 countries worldwide.
Full Members: Associate Members: ∗ FIRE, Colombia ∗ Epilepsy Action, Australia ∗ Epilepsy Namibia, Namibia ∗ Epi-Rodina, Czech Republic ∗ Epi-Apfape (EPI), Portugal ∗ Lithuanian Association for Integration of People with Epilepsy (LESIA), Lithuania ∗ Association for the Future of People with Epilepsy in Hungary, Hungary ∗ Association Clinique des Epileptiques, Togo Annual Report 2007 ∗ Nepal Epilepsy Association, Nepal ∗ Canadian Epilepsy Alliance Alliance Canadienne de l’Epilepsie, Canada
8 International Bureau for Epilepsy: Annual Report 2007 A proposal was put forward for a commemorative brochure brochure commemorative a for forward put was A proposal GCAE of Anniversary 10th tionship of the Global Campaign partners. that thisconnection will Global Campaign within theWHO.Itisanticipated Neuroscience attheWHOin Geneva, toworkonthe ing on the Programme forNeurological Diseases and work- MedicalOfficer a Dr TarunDua, finance to ment the agree- formalising the end of theyear, at signed A contract between IBE/ILAEandtheWHOwas Consultant tothe Campaign treatment gap. pleted demonstrationprojects to Project Evaluation: programme of China. project has now been incorporated into the national health This programme. health the national in epilepsy include planned to covertherural entire areaofChina andto been taken over by the Chinese Ministry of Health. It is have epilepsy treatment of the concerning activities the China: Dutch governmentand all stakeholders with funds made available through the Georgia: At a meeting of the group in November 2007, a series of of aseries in 2007, November group the of ameeting At inepilepsy. interest an The group will comprise MEPs Group. for Epilepsy with Advocates Parliamentary the creating is now Group Action the EUCARE Political mid-2006, in Parliament European Following a very successful m Group. Action thePolitical through already underway The second element ofEUCARE, that of advocacy,is stimulate improvements in epilepsy care. that will ultimately data, sociological and clinical spective study in The terms amajor resource will generate pro- of newly diagnosed with epilepsy in Europe. people in outcomes social and ofpharmacological study observational will prospective amajor Epilepsy) be nosed FONDE (Following Outcomes in Newly Diag- EUCARE. A major project in China has been finalised and and finalised been inChina has A major project A project protocol wasunanimouslyagreed by It is intended to evaluate all com- Nationaal Epilepsie Fonds Epilepsie Nationaal enhance thewo eeting with Members of thewith Members of eeting assess theirimpact onthe Against Epilepsy ILAE/IBE/WHO GlobalCampaign going including: Several projects are on- Projects Demonstration 2007 the Global Campaign. Campaign. Global the entific element of of element entific required for the sci- sophisticated software development of the year focussing on the experienced a busy EUCARE rking rela- tive year for was an ac- . de Boer andThanos Covanis From left:Mike Glynn, Ann Li est supporters with the deat the est supporters with ofitsstrong- lost one Campaign Global On asad note, the licensethe use the of Global Campaign nameand brand. to anofficial toestablish process itplanned Eventually priatethe useofCampaign. name; andapplying control measures to identify inappro- inits carriedout being of projects and quality quantity the establishing for epilepsy; brand international asan value where the Global Campaign is being used; determining its and how willassistin appreciating information This currently underway, is whatactivity place, taken already activity has what lish out prior reference to theCamp range of projects at local, national and regional level with- used by ILAE chapters and IBEmembers fora wide Aware that the Global Campai activities of GCAE Collation protectingcivil and human rights ofpeople withepilepsy. ness and adequacy of these measures in promoting and care world wide, in order to review the comprehensive- community services, and provision of appropriate health employment, residential and rights, education, civil of areas the in regulations and legislation epilepsy existing information on iscollecting project introduced This newly onLegislation Project and 2006 are also being drafted. in 2005 activities Campaign about reports annual Short to prepare a history of the Campaign. launched in Dublin and Geneva in 1997, has been invited ofthe which campaign, idea was the first introduced who to mark 10 years campaign.of the Reynolds, Dr Ted EUCAREwas takenthe overby IBE office. Lee-Donaldson, ProgrammeManager, administration of In December 2007, following bringing about legislative change. th by associations introduced initiatives advocacy showcasing handbook a best practice the and production Marseille2008, &Societyin Epilepsy for the EUCARE sessionthe at 11th Conference on preparations Europe, in centres onepilepsy information the of collection activitiesfuture including were planned, and what is planned for the future. ttle, Andreas Habberstad, Hanneke h of Dr Leonid Prilipko in Prilipko DrLeonid h of at have been successful in the resignation ofKaren gn name and logo are often aign, it is planned to estab- To mark the mid-point in the term of office of the International Executive Committee, a two day meeting was held in Glasgow in November. The meeting focused in particular on a review of the IBE Long Term Strategy, with the re- vised document circulated to all stakeholders shortly after the meeting. The committee also identified future activi- ties, the main decision being the introduction of a third tier for Annual Dues, to assist those members who face financial hardship; the creation of a Fundraising Task Force to draft a strategy for future fundraising; consideration of a new Membership category to facilitate applications from associations in small, low- population countries or regions; and the launch of a special Membership Drive for 2008. International Executive Committee IBE acknowledges the support of Eisai and Meets in Scotland the Glasgow Convention Bureau.
Solidarity Fund Supporting Members in Developing Regions
In 2007 the Solidarity Fund provided the means • Epilepsy Hospital Bethel, Japan of supporting the annual dues of Full Members in • Epilepsy Connections, Scotland 19 countries categorised as Low Income by the • Swiss Epilepsy Centre, Switzerland World Bank. Without this support it is likely that • Gravesend Epilepsy Network, UK several of these members, who operate with very little financial backing, would not have been able • Joint Epilepsy Council of Australia, Australia to meet their dues obligations. • ANLICHE, Chile The generosity of many Members was shown • AURA, Slovakia through their donations to the Fund in 2007, and • Swedish Epilepsy Association, Sweden IBE would like to thank the following: • Epi-Suisse, Switzerland International Bureau for Epilepsy: Bureau for Epilepsy: International Promising Strategies The PROMISING STRATEGIES PROGRAM, first launched in 2006, gathered momentum in 2007 as the first initiatives received funding. In 2007, a total of 13 initiatives, which aimed at improving quality of life for people with epilepsy in developing nations, were supported. The funded projects were in Argentina, Cameroon, Ecuador, Gambia, Guatemala, Mauritius, Mongolia, Sierra Leone, South Africa, Romania, Uganda, Zambia and Zimbabwe. Annual Report 2007 In September 2007, a second round of funding was launched, with more than 20 applications received and with successful applicants due to be announced in early 2008. IBE is grateful to Epilepsy Foundation of America which has provided annual support to the initia- tive. IBE would also like to thank the staff of UCB Pharma who donated the proceeds of a Fun Run to the program. The staff members have pledged to provide further sponsorship in 2008. www.ibe-epilepsy.org/promising-strategy
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International Bureau for Epilepsy: Annual Report 2007
and some preliminary results were obtained. Of began different typesofepilepsy ofgenesin role processandatunderstanding epileptogenic the preventingadvancingthe of at problem aimed ofresearch lines several integrated 2007, During budget exceeding €13 million. research Europeanepilepsy exciting projects, with a EPICURE isoneofEuropean countries, themost 13 IBE.Involving including theproject, to connected COMMUNIQUÉ AWARDS 2008 LSH-037315 Programme Project Sixth Framework London, Canada, for thLondon, Canada,for Support Centre, a community-based centrein Mrs Secco has been Executive Directorof Epilepsy resignation ofMrsDenise by the created vacancy the fill Americato North Committee attheendof 2007asVicePresident Mary Secco joined the Vice PresidentNorthAmerica representatives ofthe30partners representatives by attended January2007, in Venice EPICURE kicked offwith a meeting in International Executive Executive International e pastseven years. Crépininearly2007. in pharmaceutical PublicRelati The annual Communiqué Awards recognise best practice game distributed world wide in 2007. almost ofthe with units initiatives, 46,000 educational popular most and IBE’s isone of successful Zone Action 2008. Awards fortheCommuniqué be submitted would board game developed to educate children about epilepsy, At the end of 2007, IBE learned that Action Zone, the for 4years. would take place in Malta. EPICURE is due to run It wasagreedthatthesecondannual meeting process. epileptogenic ofthe prevention the in perspectives new opening role of inflammatory molecules was highlighted, analysed. In this, and in other epilepsy models, the mental modelsofpost experi- in process fortheepileptogenic responsible important genes. Some molecular mechanisms of20potentially wastheidentification interest traumatic epilepsy were epilepsy traumatic ons and medical education. International Epilepsy News
Edited by Dr Carlos Acevedo, IE News continues to be same time the previous issue is made available to all one of the most important voices of IBE and is used with visitors to the site. great success to promote the activities both of IBE and of The success of the newsletter is made possible through the its Members. help and support of IBE Members who provide news, Published four times each year, the newsletter is distrib- articles and photographs, so that IE News can truly reflect uted in more than 120 countries world wide to IBE Mem- the trials and achievements of its members globally. The bers, Commissions and Task Forces, ILAE Chapters, Editor is also assisted by the Regional Sub-editors and by Members of the European Parliament, UN representa- members of the Regional Executive Committees, who tives, WHO Regional Health Advisors, other NGOs, play an important role in helping to identify reports and members of the pharmaceutical industry, and to libraries news items that will be of interest to readers. and subscribers. During 2007, a new Experts column was introduced and During 2007 the magazine was made available on the IBE has proven to be a very popular section of the newsletter. website for automatic download in full for the first time. The magazine also continues to include regular reports in The latest issue is uploaded to the password protected Spanish to highlight the work of IBE Members in Spanish- Members Section as soon as it is finalised, and at the speaking countries and particularly in Latin America.
Website Refreshed! www.ibe-epilepsy.org
After almost a year of hard work, the new IBE website was Bureau for Epilepsy: International launched at the end of November 2007. Thanks are due, in no small measure, to the members of the Website Task Force: Shunglon Lai (Chair), Paul Sharkey and Ken Lowenberg, who oversaw much of the elements involved. This was the first major overhaul of the site since it was first launched in May 2001. Attention has been paid to ensuring that the pages are easy to navigate, with many sections now accessible directly from the home page. Special pages are provided for each of the seven Regional Committees, with a range of articles and reports that are Annual Report 2007 regularly updated. A dynamic new feature is the photo gallery that shuffles the photos displayed each time a page is refreshed. Another addition is the Google mapping feature that allows visitors to find the location of each member with pinpoint accuracy. For Members, there is now a dedicated password protected section that hold reports, downloads, logos, forms, ballot papers and procedural documents and guidelines, for easy access by Full and Associate Members. So why not pay us at visit at www.ibe-epilepsy.org.
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International Bureau for Epilepsy: Annual Report 2007 The award was presented Singapore. in out recompense, was announced for the first time during the General Assembly national and local level and to highlight the tremendous efforts undertaken with- qu the to improve efforts of layvolunteers The IBE Volunteer Award,introduced in IBE Volunteer Award I 2007 Regional &InternationalCongresses term of the current committee and to mark this the Open tomark thisthe and Open committee current term the of 120 members. The assemblyma over of attendance an congress, with last the of day ond the IBEGeneral sec- Assembly on As the washeld usual, activities. formal social and both included and programme scientific the dem with of neurologists and doctors. The symposium ran in tan- by symposium a large numberlies, the wasalso attended fami- and their to lay people addition In event. congress booked, signifying the ever in mittees in South East Asia Com- IBERegional the by jointly Carers,organised their The special Symposium for special sessions and events organised by IBE. Programme, from Scientific there Apart were also the mix of social and medical debate. workshops were very well attended and provided a good and Allofthe sessions Programme wasof quality. high the that Scientific ILAE member ensured associations, Committees, withgreatassist theof world. The dedicated Organisingand Scientific tion, attracting three thousand delegates from all regions Singapore proved to be asuccessful and popular destina- (FIRE) and the Colombian League Against Epilepsy. Epilepsy. Against League Colombian the (FIRE) and Epilepsy People with of Rehabilitation for the the Foundation nominated by been when India played host in the late 1980’s. since the congress had last been hosted in Asia, gress took place inSingapore. It had been 20 years Epilepsy Con- International the27th earlyJuly, n to Mrs Margaret Fandi Margaret to Mrs and Western Pacific was fully People with Epilepsy and and Epilepsy with People ance from thelocalIBE and creasing popularity of this this of popularity creasing rked the mid-point of the mid-point of the rked 2006as ameans ofrecognising the ality of life of people with epilepsy at life epilepsy of ality of with people ň o Merz, Colombia, who had clip fromclip film the Sari Tervonen from Finland who showed a short included These their associations. newsfrom topresent time platform tosomemembers who specifically had requested a provide to opportunity Term the There was also Strategy. Forum element ofthe assembly discussed IBE’s Long is a joint initiative of IBE and initiative UCB. is ajoint which project, tothe of entries a selection showed which exhibition of Freedom in Mind artwork mounted by UCB, a and very professional initiatives, Strategy Promising of the workofmore than 42 member associations, a display posters promoting of display the included Other activities to educate people aboutepilepsy. and to funds raise hasproduced the association which CD who had delegates clapping in rhythm to aterrific music that has been launched; and Anthony Zimba from Zambia China Epilepsy Day in annual the about talked who China The Year of theWolf ; Shichuo Li from 1st East Mediterranean Epilepsy Congress 1st East Mediterranean
During the congress IBE celebrated the launch of the Eastern Mediterranean Regional Committee and introduced Dr Abdulaziz Al The ancient city of Luxor in Egypt with its his- Semari, Vice President for the region. toric temples and tombs, provided a wonderful venue for the 1st East Mediterranean Epilepsy Elections have now been held to fill positions Congress in February 2007. on the Regional Executive Committee Eastern Mediterranean, with the following results: This joint congress of IBE and ILAE, with more than 400 delegates attending from • Chair: Mrs Manar Sawan (Lebanon) within the region and further a-field, was an • Vice Chair: Dr Muhamed Aldossari (Saudi Arabia) important inaugural meeting. • Secretary: Dr Najib Kissani (Morocco).
Ambassador for Epilepsy Awards 2007 Ambassador for Epilepsy Awards were bestowed on the twelve worthy recipients pictured below. IBE President Susanne Lund and ILAE President Peter Wolf made the presentations during the Opening Ceremony of the 27th International Epilepsy Congress, Singapore 2007.
Bureau for Epilepsy: International
Eva Andermann Alexis Arzimanoglou Helen Cross Yukio Fukuyama Pierre Genton Gregory L Holmes Annual Report 2007 Reetta Kälviäinen Shih Hui Lim FH Lopes de Silva MM Mehndiratta Tomás Mesa Paolo Tinuper
Social Accomplishment Award 2007 The Social Accomplishment Award was IBE Driving Commission for many years. presented to Dr John Kirker from Ireland to He is currently a member of the Second recognise his outstanding activities aimed at European Working Group on Epilepsy and the social benefit of people with epilepsy. Driving - which is an advisory group to the Dr Kirker’s medical career dates back to European Union. 1944. He has been involved at international Dr Kirker had already been presented with level for much of that time and chaired the an Ambassador for Epilepsy Award in 1974.
13 14 2 International Bureau for Epilepsy: Annual Report 2007 Contact: Mr YoussoufNoormamode. www.edycsepilepsy.intnet.mu E: [email protected] T: +230 213 1733, F: +230 213 1733 Port Louis, Mauritius. 442 StateLand, Boulevard Rivaltz EDYCS Epilepsy Group(Mauritius) MAURITIUS Contact: Mr Juster K. Thuranira. E: [email protected] F: +254020 387 4871 T: +254 020 387 0885 PO Box60790, 00200 Nairobi, Kenya. with Epilepsy (KAWE) Kenya Association forthe Welfare of People KENYA Contact: MrPaul Ayisu. E: [email protected] T: +233 2166 5421 ext4420 c/o Box M230, Accra, Ghana. Ghana Epilepsy Association GHANA Harding. MrsRita Contact: E: [email protected] 8901740T: +220 Serrekunda, The Gambia. London Corner, PO Box2230 #5 DippaDurkureh Road The Gambia Epilepsy Association GAMBIA Contact: Dr Zenebe E: [email protected] T: +251 1553617, F: +251 1551981 Addis Ababa,Ethiopia. PO Box25516, Code 1000 Epilepsy SupportAssociation of Ethiopia ETHIOPIA Contact: MrsMireille Flore Kounkou. E: [email protected] T: +242 53 7134, F: +242 242 958 BP 1533,Pointe Noire, Congo. 188 Avdel’Indépendance Tié Association Fallone C Contact: Sr Franca de Simone. E: [email protected] T: +23 777 105 862 B.P. 47 Ombessa,Cameroon. Mission CatholiqueNyamanga II l'Epilepsie Association Camerounese contre CAMEROON MEMBERS OFTHEAFRICANREGIONAL COMMITTEE ONGO
Gedlie Damtie. Damtie. Gedlie Secretary: Vice Chair: Zenebe Gedlie Damtie Gedlie Zenebe Chair: AFRICAN REGIONALEXECUTIVECOMMITTEE AFRICA Contact: MrMbuso Mahlalela. E: [email protected] F: +926505 4727 6037032T: +268 PO Box5638,H100 Mbabane,Swaziland. Swaziland Epilepsy Association SWAZILAND Contact: Ms Noeline de Goede. E: national [email protected] F: +272144 85053 T: +27 2144 73014 Capetown, SouthAfrica. PO Box73,Observatory 7935 Epilepsy South Africa SOUTH AFRICA Contact: MrMax ABangura. E: [email protected] Freetown, SierraLeone. 10A RokupaEstate,POBox381 Epilepsy Associationof Sierra Leone LEONE SIERRA Contact: Ale Gueye. E: [email protected] T: +221 8253678, F: +221 8259227 BP 5035,Dakar-Fann, Senegal. Centre Hospitalo-Universitaire deFann Clinique Neurologique Ligue Senegalaise contre l’Epilepsie SENEGAL Contact: Dr SE Nwakwue. E: [email protected] T: +803 433 2275 AbiaState,Nigeria. Aba, No 2Weeks Road by 84 Asa Road Epilepsy Association ofNigeria NIGERIA Contact: Dr DDouma. E: [email protected] T: +227 723 392, F: +227 733 446 Niger. BP238 Niamey, Hôpital National deNaimey dePsychiatrie Service LNCEMNMC NIGER Contact: MsHarmiena Riphagen. www.epilepsynamibia.org E: [email protected] F: +264612 41865 T: +264 813 226834 PO Box11822, Klein Windhoek, Namibia. Epilepsy Namibia NAMIBIA Zenebe GedlieDamtie, Ethiopia
Anthony Zimba, Zambia Augustine Mugarura,Uganda
Contact: MrAugustine Mugarura. www.epilepsy.org.ug [email protected] E: [email protected] / T/F: +256 414 287700 Kampala, Uganda. PO Box16260, Wandegeya Plot 3NtindaII Road Epilepsy Support Association UGANDA Contact: Dr. Kokou Sodjéhoun E: [email protected] T: +228 271 0449 Lomé, Togo. 11 B.P.75 155, Carrefour de Rio Association Clinique des Epileptiques Member: Associate TOGO Contact: Mrs Aisia Mrema. E: [email protected] T: +744 822 517 PO Box65293, Dar Es Epilepsy (POCET) Parents Organisationfor Children with UNITED REPOF TANZANIA, Contact: MrsSigudu. E: [email protected] T: +263 472 4071 Mazoe Street, Harare, Zimbabwe. Old General Hospital PO BoxA,104, Avondale Epilepsy Support Foundation ZIMBABWE Contact: Betty B. Nsachilwa E: [email protected] T: +260 977 789042 Zambia. Lusaka, Kalundwe Road, POBox32443 Amanda Ethu Building Epilepsy Association of Zambia ZAMBIA
Salaam, Tanzania.
Strategies with Promise in Africa
Tomato growing Vegetable farming Massage therapy Tailoring workshop Cameroon The Gambia Mauritius Sierra Leone
Entrepreneur Program Anti-Epileptic Drugs Bank Poultry rearing Awareness Raising Program South Africa Uganda Zambia Zimbabwe
ntroduced in 2006, the Promising Strategies Program to training 50 people with epilepsy in textile tailoring. provided financial support to a total of eight new and innovative initiatives in Africa under the first round In South Africa Promising Strategies funding helped I Epilepsy South Africa to roll out the International Labor
of funding in 2007. The projects are aimed at improving Bureau for Epilepsy: International the quality of life for people with epilepsy using diverse Organisation’s Start and Improve Your Business (SIYB) and often novel methods. Program. This entrepreneur program is currently used in 90 countries world wide. In Cameroon, where 5.8% of the population has epi- Following on the model introduced by ANLICHE in lepsy, a tomato growing and pig rearing initiative was created under the leadership of Sr Franca de Simone at the Chile, the Epilepsy Support Association, Uganda intro- Cameroon Association Against Epilepsy. The project will duced a Community Drugs Bank, offering affordable help people with epilepsy to become self-sufficient. AEDs to people with epilepsy. With 90% of the popula- tion living in remote rural areas, nurses and healthcare Agriculture was also the focus in The Gambia, where workers will take the AEDs to people living in remote 30 people with epilepsy were trained in vegetable grow- regions. ing at the Gambia Epilepsy Association. The Gambian Poultry husbandry and egg production was the concept of
project also included instruction in tailoring and in food Annual Report 2007 Zambia and nutrition. the Epilepsy Association of . The association provided tuition in raising chickens, providing two To improve the quality of life of people with refractory sources of income—the chickens and the eggs they laid. epilepsy, Edycs Epilepsy Group Mauritius introduced A portion of the profits is also pumped back in to the as- Massage Therapy Training in collaboration with the sociation to meet the cost of further training programmes. Massage Therapy Clinic of Port Louis. One of the ob- jectives of the programme is to promote massage as a Epilepsy Support Foundation, Zimbabwe initiated a complementary treatment for people with uncontrolled special programme targeting rural districts in order to seizures. dispel the myths surrounding epilepsy that discourage people from seeking diagnosis and treatment. An impor- Tailoring was also the focus in Sierra Leone where tant element of the program is the creation of educational the Epilepsy Association of Sierra Leone sought funding workshops for traditional healers and herbalists.
15 16 4 International Bureau for Epilepsy: Annual Report 2007 the disability sector”. Since it sector”. wasset in disability up the called “second tier of discrimination within within discrimination “second tier of called Down Syndrome South Africa and Autism lished by Epilepsy South Africa, the South South Africa to focus attention on the so- Inclusion South Africa (ISA) was estab- membership of Inclusion International. International. Inclusion of membership African FederationMental forHealth, Inclusion South Africa Africa South Inclusion 2007, ISA has successfully obtained obtained 2007, ISAhassuccessfully projects in 2007. in 2007. projects Epilepsy South Africa’s income generation rugs spun by South African women at one of Pictured right are some of the colourful floor become selfsufficient. and earnmoney to ability their turnincrease in will which their and knowledge, increase skills to areempowered disabilities and other lepsy Through these programmes people with epi- or perform craftwork for financial gain. work disabilities other and epilepsy with people weaving, astextile where such communities, various income generation projects within Epilepsy South Africa supports and develops Capacity Building Epilepsy SouthAfrica Common goals identifiedincluded acommon productively. collaborate could members areas where to mapout and interests common share to opportunity Zimbabwe, provided the and Swaziland Zambia, Africa, South from tions associa- bymember attended event, The year. southern region of Africa in the IBE Members for A Consultative Meeting Meeting inCapeTown, SouthAfrica took place during the
epilepsy centre. Edycs Epilepsy Group and the new both of activities the help with rity to Ministry the through from thePrime Minister’s Office Edycs also received a new vehicle equipment for the new centre. medicalof inthe purchase Edycs Cooperation Programmesupported The European Union Decentralised Mauritius. of Republic President, by the Right Hon. Sir A Jugnauth, The Opening Ceremonywasattended Louis. Port in Centre, Service Health aEpilepsy of the opening was 2007 of highlight a Mauritius, Group, Epilepsy Edycs For Edycs EpilepsyGroup proposal to hold future collaborative meetings. meetings. collaborative future to hold proposal a and Day Epilepsy African an of idea the improvement of communications in the region, agenda in human resource development, of Social Secu- Mauritius Swaziland Epilepsy Association Swaziland Epilepsy Association held availing themselves a dinner to formally introduce the for a worthy cause. Board of Trustees to His Royal High- An important issue ness Prince Bandzile, Patron of the that was raised was organization. Each board member that there was clearly introduced themselves and gave a a need to raise aware- brief background of their work. ness in the public and His Royal Highness Prince Bandzile to reach out to as many people warmly welcomed the board of Trus- as possible. tees and thanked them for voluntarily
Epilepsy Support Association Uganda The main activity of the Epilepsy Support Association Uganda (ESAU) is to mobilize people with epilepsy, their parents and guardians into support groups. So far the association boasts 139 support groups in 20 districts. Dur- ing 2007: ♦ Over 5,000 Brochures in 6 local languages and English were produced. ♦ Over 1,000 Posters were produced in conjunction with Ministry of Health. ♦ Calendars with epilepsy messages were printed at the start of the year and distributed. ♦ Spots messages were aired on 3 regional radio stations on epilepsy and a few hosted a talk show as well. ♦ In 2007 forty new volunteers were trained in community mobilization, volunteering, basic counselling and referral, bringing the number to 465 volunteers in total. ♦ ESAU formed partnerships with Local District governments and has signed memoranda of understanding with a number of these.
Association Clinique des Epileptiques TOGO The activities of the association in Togo in 2007 concerned both ongoing patient care, established by Dr Sodjehoun after his return to Lomé in 2001, as well as the construction project in Sanguera, where a new outpatient clinic was being built on the outskirts of
the capital, Lomé. The construction of a single-building outpatient Bureau for Epilepsy: International centre in Sanguera was made possible by donations from German, French and Swiss support groups. With the opening ceremony due to take place in Spring 2008, it is the only facility of its kind in Togo and hopes to serve patients’ needs from the entire region including the neighbouring countries Benin and Ghana. Epilepsy Support Foundation of Zimbabwe
will be remembered in so prohibitive that compliance is greatly Zimbabwe as the year a affected. The major challenges facing the 2007 Annual Report 2007 specialized epilepsy clinic started at the Foundation are resources in general, Epilepsy Rehabilitation Centre in Harare. compounded by high levels of inflation in Zimbabwe. The clinic has been hard- We are also grateful to the Ministry of est hit by a shortage of medication. Health for providing a grant each month to pay the nurse and assistant. The clinic The EpiAction group of youngsters with supplies medication which has been do- epilepsy, supported by those affected in nated to it by corporate partners. But this one way or the other, has done extremely medication is never adequate. Most of well in empowering youth to live positive the time patients return home without lives. They have recorded drama and medication and their families struggle to poems and they have plans for an audio purchase it. Unfortunately, the prices are album in 2008.
17 18 6 International Bureau for Epilepsy: Annual Report 2007 Contact: MrsManar Sawan. E: [email protected] F: +9617731 383 T: +961 3388 713 Lebanon. Saida Kahn alEfranj Association of Care of Epileptic Patients LEBANON Contact: Dr Gharagozli. www.iranepi.org E: [email protected] F: +982188 463 377 T: +98 2188 469153 Iran. Tehran PO Box16315-1419 Iranian Epilepsy Association IRAN Contact: DrHassanHosny. E: [email protected] F: +203304 7117 T: +203 303 3338 Egypt. Alexandria 21111 ZaghlolStreet 40 Safeya Egyptian Epilepsy Association Dr HassanHosny EGYPT MEMBERS INTHEEASTERN
Vice President: Secretary: Vice Chair: Chair: REGIONAL EXECUTIVECOMMITTEE EASTERN MEDITERRANEAN Eastern Mediterranean Manar Sawan Sawan Manar Contact: ProfNajib Kissani. [email protected] or E: [email protected] F: +2122443 7031 T: +212 2443 1841 Marrakech, Morocco. BP 7010SidiAbbad 40000 El Razi Hospital Neurology Department Association Marocaine contre l’Epilepsie MOROCCO Contact: Dr AbdulazizAlsemari. www.epilepsyinarabic.com [email protected] E: [email protected] or F: +9661552 4755 T: +966 1552 4755 11211, Saudi Arabia. Riyadh, PO Box3354, MBC 76 Epilepsy Support and Information Centre SAUDI ARABIA Contact: Dr Haroon RashidChaudhry. E: [email protected] F: +924275 72488 T: +92 4275 81724 Lahore, Pakistan. Colony Jamal 83 Shah FLAME PAKISTAN MEDITERRANEAN REGION REGION MEDITERRANEAN Manar Sawan,Lebanon Manar
Najib Kissani,Morocco Muhammed Aldossari,SaudiArabia
Abdulaziz AlSemari, SaudiArabia(
Contact: Dr Chahnez Triki. E: [email protected] F: +21674 651 975 T:+216 98413 776 Tunisia. 3029 Sfax Hôpital Habib Bourguiba Department of Neurology Tunisian Epilepsy Association TUNISIA
ex officio ) Association of Care of Launch of Eastern Mediterranean People with Epilepsy Regional Committee Lebanon The Association of Care of People with Epilepsy in Lebanon has helped 500 people with epilepsy by provid- ing medical checkups, laboratory tests and reports and social and healthcare support. The association is carrying out epilepsy research, holding information meetings to acquaint people with what epilepsy means, and participating in talk shows through which people will learn to recognise the symptoms of epilepsy and how to help someone having a seizure. A VNS transplant took place in Lebanon for the first time in 2007; the cost of the apparatus and treatment, totalling US$30,000, was met by donations. The association participated in local awareness raising events that were held in private schools, in addition to the ongoing exhibition held in Khan Al Efranj in Saida for the purpose of promoting the jewellery and other craft goods produced by members of the association. The Eastern Mediterranean Regional Committee was launched at the time of the 1st East Mediterranean Epilepsy Congress in Luxor, Egypt in February 2007. Elections to fill positions on the Regional Executive Committee completed later in the year. A first meeting of the committee was planned for early 2008 at which time activities to encourage participation of IBE members in the region would be formulated. One priority is to change the Arabic term used for of epilepsy, which translates as ’insane’, and to use two languages - Arabic and English - when referring to epilepsy. Up to date news on the committee are available on the re- gional pages of the IBE website.
Epilepsy Support and Information Centre Saudi Arabia Bureau for Epilepsy: International 2007 has been a very busy year for the Epilepsy Support medical emergency response to epilepsy, ESIC organizes and Information Centre (ESIC) of Riyadh, Saudi Arabia. regular accredited full day Epilepsy Symposiums for Teacher Awareness Program (TAP) Primary Health Care Professionals. ESIC significantly accelerated implementation of the The 4th in a series of Symposiums, Women and New- Teacher Awareness Program (TAP) by negotiating the borns with Epilepsy, was held in three cities in Saudi Ara- support and collaboration of the Riyadh Branch of the bia. In support of this symposium, ESIC developed and Ministry of Education (Women’s Section). Ministry sup- published two separate booklets on Women and Epilepsy; port enabled ESIC to develop a regular two monthly one booklet for Healthcare Professionals and a second Seminar Schedule of elementary and secondary schools in booklet designed specifically for women with epilepsy. Riyadh. Family Festival for Epilepsy Awareness Annual Report 2007 The Teacher Awareness Program (TAP) is designed to Each year, ESIC organizes an all-day Epilepsy Family educate teachers and other school staff members to Festival to promote increased recognition and awareness recognize seizures and respond appropriately to seizure of epilepsy in the community and to provide support, rec- types, and to encourage educators to be more accepting ognition and respect for children with epilepsy and their and understanding of the child or adult with epilepsy. families. In support of this program, ESIC has developed standard- This successful public event mixes games and entertain- ized lecture-presentations that may be utilized by various ment, with educational activities including an epilepsy speakers in each individual workshop. facts quiz draw, seizure first aid demonstrations and brief Symposiums for Healthcare Professionals lectures about epilepsy. To promote enhanced medical care and strengthen Attendance at the Festival usually exceeds 800 people.
19 20 2 International Bureau for Epilepsy: Annual Report 2007 Contact: Dr Ivan Bielen. www.epilepsija.hr E: [email protected] T: +38 513 712 143, F:+38 513 712 372 Croatia. 10000 Zagreb Sveti Duh64 General Hospital“SvetiDuh” Croatian Association for Epilepsy CROATIA Contact: MrsGalinaMarkova Fax: +359 29817611, +359 28586052 Tel: +359 886058896, +359 889297105 E: [email protected] Sofia 1408,Bulgaria. Bl10, entr. G,floor7,ap67 Triadica District, Strelbishte Epilepsy Foundation of Parentsof Childrenwith Member: Associate Contact: Dr Marian Dimitrov. E: [email protected] 29895341T/F: +359 Bulgaria. 1000 Sofia 20 SlavianskaStr. Epilepsy ofPatients for with Assistance Association BULGARIA Contact: MrsBrigitte Willaert. Www.epilepsieliga.be www.ligueepilepsie.be E: [email protected] T: +32 2344 3263, F: +32 234 36837 Belgium. Brussels 1190 Avenue Albertlaan49 Epilepsie asbl-vzw Dr Vrienden van deBelgische Liga tegen contre l'Epilepsie Les Amis de la Ligue Nationale Belge BELGIUM MrsL Contact: Grössing Soldan. www.epilepsie.at E: [email protected] T/F: +43 1489 5278 Austria. 1170 Wien Wichtelgasse 55/17-19 Österreich (EDO) Full Member: Epilepsie Dachverband AUSTRIA MEMBERS OFTHEEUROPEANREGIONALCOMMITTEE Photo: Peter DahlqvistPhoto: Peter Member: Secretary: Vice Chair: Chair: EUROPEAN REGIONALEXECUTIVECOMMITTEE Europe Contact: MrsAntigoni Kallimachou [email protected] E: F: +3572246 2252 T: +357 9941 2779 Cyprus. Nicosia 2114 Platy 8 Epidavrou Str. with Epilepsy AssociationofSupportfor People Cyprus CYPRUS Contact: MrsJuttaHoumøller. www.epilepsiforeningen.dk E: [email protected] F: +456611 7117 T: +45 6611 9091 Denmark. Odense C DK-5000 Kongensgade 68, 2. Tv. Dansk Epilepsiforening DENMARK Contact: MrsLucie Pomajslova www.epistop.cz E: [email protected] T: +420 602 133 699 Czech Republic. 140 59 Praha 4 Videnska 800 EpiStop Hutova Contact: Mr Ivan Holecek/Ms. Blanka www.er-sme.cz E: [email protected]/[email protected] T: +420 777 873334/ 605854769 Czech Republic. Prague 3—Viwowrady 13000 Sobéslavská 2377/1 Epi-Rodina Members: Associate Contact: MsAlenaStuchlikova. www.epilepsie.ecn.cz E: [email protected] F: +42024172 2136 T: +4202 4172 2136 Czech Republic. Prague 4 14200 Liskova 3 Spolecnost “E” CZECH REPUBLIC Peter Dahlqvist,Sweden Seppo Sarkkula,Finland Andreas Habberstad,Norway Athanasios Covanis, Greece Contact: Dr AndreasOun. E: [email protected] F: +371 7318509 7318515T: +372 Estonia. 51014 Tartu Puusepp St2 Estonian Epilepsy Association ESTONIA Contact: Project Nurs E: [email protected] F: +455827 1471 Denmark. 4293 Dianalund Dr Sellsvej 23 Børneambulatoriet 1.Epilepsihospitalet Danish Epilepsy Centre Member: Associate Contact: MrsB Bonard Breack. E: [email protected] T: +33 15680 1060, F: +33 15680 1061 France. 75015 Paris 115 ruede l’Abbé Groult ServicesEpilepsie Euro Contract: Mrs Laila Ahddar. www.epilepsie-france.fr E:[email protected] T/F: +33 153 806 664 France. 75015 Paris 133 rueFalguière, Bâtiment D Epilepsie-France Members: Associate Contact: Dr Jacqueline Beaussart. www.epilepsies-epileptiques.com E: [email protected] T: +33 3205 71941, F: +33 3200 94124 Lille, France. 38 Ruedu Plat, F-59000 AISPACE FRANCE Contact: MrsSariTervonen. www.epilepsia.fi E: [email protected] F: +3589350 82322 T: +358 9350 82320 Finland. FIN-00700 Helsinki Malmin Kauppatie26 Epilepsialiitto FINLAND e VibekeStubbings.
EOLE IRELAND Associate Members: 240 Boulevard Voltaire Brainwave The Irish Epilepsy Association National Epilepsie Fonds/De Macht van 75011 Paris 249 Crumlin Road het Kleine France. Dublin 12 Postbus 270 T: +33 14371 6260, F: +33 14371 3606 Ireland. 3990 GB Houten E: [email protected] T: +353 1455 7500 The Netherlands. Contact: Dr Roger Salbreux. F: +353 1455 7013 T: +31 306 344 063 E: [email protected] F: +31 306 344 060 Telley-Epilespoir www.epilepsy.ie E: [email protected] 7 rue de la Poste Contact: Mr Mike Glynn. www.epilepsie.nl 18370 Saint-Saturnin Contact: Mr Martin Boer. France. ISRAEL T: +33 2486 16401 Israel Epilepsy Association SEIN E: [email protected] 4 Avodat Yisrael Postbus 540, 2130 AM Hoofddorp www.infos-telley-epilespoir.org PO Box 1598 The Netherlands. Contact: Ms Antoinette Schoens. Jerusalem 91014 T: +31 235 588 412 Israel. F: +31 235 588 409 GEORGIA T: +97 2 5000283 E: [email protected] Epilepsy & Environment Association of F: +972 2 5371044 www.sein.nl Georgia E: [email protected] Contact: Hanneke de Boer. Dept of Neurology www.epilepsy.org.il Stichting Kempenhaeghe Tbilisi State Medical University Contact: Mr Y Unterman. Jacob Nicoladze str. 6, appt 22 Sterkselseweg 65, 5591 VE Heeze 380079 Tbilisi, Georgia. ITALY The Netherlands. T: +995 32233 551, F: +995 32221 965 Associazione Italiana contro l’Epilessia T: +31 402 279 022, F: +31 402 279 111 E: [email protected] (AICE) E: [email protected] Contact: Dr Natela Okujava. Via T Marino 7 www.kempenhaeghe.nl 20121 Milan Contact: Mr I Bomer. GERMANY Italy. Deutsche Epilepsie Vereinigung e.V. T: +39 02809 299 NORWAY Zillestrasse 102 F: +39 02809 799 Norsk Epilepsiforbund D-10585 Berlin E: [email protected] Karl Johansgt. 7, 0154 Oslo Germany. www.aice-epilessia.it Norway. T: +49 30342 4414, F: +40 30342 4466 Contact: Mr Giovanni Battista Pesce. T: +47 22476600, F: +47 22476601 E: [email protected] E: [email protected] www.epilepsie.sh LITHUANIA www.epilepsi.no Contact: Mr Robert Bauer. Lithuanian Society of Epileptic Patients Contact: Stine Jakobsson Strømsø and their Sponsors Associate Member: Kaunas Medical University Hospital POLAND Interessenvereinigung fur Anfallskranke in Dept of Microneurosurgery Polish Association for People Suffering Koln eV Eiveniu 2 from Epilepsy Hoeninger Weg 361 LT-3007 Kaunas Ul Fabryczna 57, 15-482 Bialystok D-50969 Koln Lithuania. Poland. Germany. T: +370 37 326 727 T/F: +48 8567 54420 T: +49 22136 05767, F: +49 22147 34875 E: [email protected] www.padaczka.2n.pl E: [email protected] Contact: Mr Tadeusz Zarebski. Contact: Dr Arunas Kobakos. www.epilepsie-online.de PORTUGAL Contact: Mr Tomas Porschen. Associate Member: Lithuania Association of Epi-Apfape (EPI) GREECE Epilepsy Patient’s Integration (LESIA) Av da Boavista, 1015 - Sala 601 Bureau for Epilepsy: International Greek National Association against Epilepsy Saltoniskiu 29/3 4100-128 Oporto Thivon and Livadias Goudi Vilnius LT-08105 Portugal. Greece. Lithuania T/F: +351 22 605 49 59 T: +30210 7751637, F: +30210 7705785 E: [email protected] E: [email protected] E: [email protected] www.lesia.lt www.epi.do.sapo.pt www.epilepsy-greece.com Contact person: Danute Murauskaite Contact: Mr Nelson Ruao. Contact: Dr A Covanis. MALTA ROMANIA HUNGARY Caritas Malta Epilepsy Association EpiRomania Association for Future of People with 7, Zenit Str. Liviu Rebreanu nr 34 Epilepsy in Hungary Paul Borg Street Cluj-Napoca, cod 400446 Lenkey u.7 Attard BZN 04 Romania. Budapest H-1184 Malta. T: +4 0264 599 500, F: +4 0264 599 501 Annual Report 2007 Hungary. T: +356 2143 6442 E: [email protected] E: [email protected] E: [email protected] www.epilepsie.ro Contact Person: Zsolt Szabó www.caritasmalta.org/epilepsy Contact: Mr Gelu Stanculescu. Contact: Mrs Victoria Dimech. ICELAND RUSSIAN FEDERATION LAUF The Icelandic Epilepsy Association NETHERLANDS All Russian Charity Foundation Hatun 10b EVN, Epilepsie Vereniging Nederland Leningradskoye shosse 114-57 101 Reykjavik Postbus 8105, 6710 AC Ede Moscow 125445 Iceland. The Netherlands. Russia. T: +354 551 4570 T: +31 318 672 772, F: +31 318 672 770 T/F: +7 495 487 5508 E: [email protected] E: [email protected] E: [email protected] www.lauf.is www.epilepsievereniging.nl www.epilepsyhelp.ru Contact: Margret Njalsdottir Contact: Mr Ton Tempels. Contact: Dr Marina Dorofeeva.
21 22 4 International Bureau for Epilepsy: Annual Report 2007 Contact: Dr. Jozef Vrátil. www.epilepsia-sk.sk E: [email protected] Slovakia. PO Box116,84005 Bratislava45 Nemocnice, Dúbravská cesta 1 Prvá NeurologickáKlinika Fakultnej AURA SLOVAKIA Contact: Dr Maria Popovic. E: [email protected] F: +3811168 6656 T: +381 1168 6155 Serbia. Krcuna 23, Beograd 11000 P. Fah230, Slobodana Penezica Serbian Society for Epilepsy SERBIA Contact: MrPhilipRobinson. www.quarriers.org.uk E: [email protected] F: +441505 613906 T: +44 1505 612224 Scotland. PA11 35X Bridge of Weir Quarriers, Quarrier's Village Maxwell. Contact: MsShirley www.epilepsyconnections.org.uk E: [email protected] F: +44141 248 5887 T: +44 141 248 4125 Scotland. Glasgow G26DH 100 Wellington Street Epilepsy Connections Members: Associate Contact: MsSDouglas-Scott. www.epilepsyscotland.org.uk E: [email protected] F: +4414141 91709 T: +44 14142 74911 Scotland. Glasgow G511JL 48 GovanRoad Epilepsy Scotland SCOTLAND Contact: MrViktor Podolski. E: [email protected] T/F: +7 09531 61808 Russian Federation. 113587 Moscow Kirovogradskayaul7kv 517 “Mutual Assistance” Epilepsy Association Member: Associate
SLOVENIA Contact: AnaMoreno Gonzalez. E: [email protected] T: +34 91 3303641 Spain. Puerta 1 AlaSur,Madrid 28040 plantasn 1 Profesor MartinLagos Calle Hospital Clinico SanCarlos Epileptico (AEAE) Asociación Españolade Ayuda al SPAIN Contact: MrsLjubicaVrba. www.epilepsija.org E: [email protected] T: +386 1432 9393 Slovenia. SL 1000, Ljubljana Ulica stare pravde 2 Slovenian League against Epilepsy Contact: Dr ChristophPachlatko. www.swissepi.ch E: [email protected] F: +411387 6249 T: +41 1387 6202 Switzerland. Bleulerstrasse 60, CH-8008 Zurich Swiss Epilepsy Center Contact: MrsR Henggeler. www.parepi.ch E: [email protected] F: +414348 86881 T: +41 4348 886560 CH-8008 Zurich, Switzerland. 84 Seefeldstrasse Epi, Par Members: Associate Contact: Dr E Zweifel. www.epi-suisse.ch E: [email protected] F: +414388 86881 T: +41 4348 86880 Switzerland. CH-8034 Zurich Seefeldstrasse 84, Postfach 313 Epi-Suisse SWITZERLAND Contact: MrsSusanne Lund. www.epilepsi.se E: [email protected] F: +46866 91588 T: +46 866 94306 Sweden. 172 27Sundbyberg PO Box1386 The Swedish Epilepsy Association SWEDEN
TURKEY Contact: MrFred Savill. www.gravesendepilepsynetwork.com E: [email protected] T/F: +44 1474 351 673 UK. Gravesend DA124AR, 13 StGeorge’s Crescent Network Gravesend Epilepsy Contact: MrJohn Murdoch. www.davidlewis.org.uk E: [email protected] T: +44 1565 640000, F: +44 1565 640200 UK. Cheshire SK97UD Mill Lane, Warford, Alderley Edge David LewisCentre Members: Associate Contact: MrPhilipLee. www.epilepsy.org.uk E: [email protected] T: +44 113 210 8800, F: +44 113 2108856 UK. Yeadon, Leeds LS19 7XY GateWay House, Drive New Anstey Epilepsy Action UK Contact: MrAlparslan Varer. www.epilepsi.org.tr E: [email protected] T/F: +90 216 3370706 Turkey. 6/A BlokKat:5 Daire:13, Pendik/Istanbul Sitesi Sokak Bati Mahallesi Anka Association of Epilepsy & Society
ra Caddesi Somtas Activities of the European Regional Executive Committee 2007
with epilepsy and their families or caretakers. It is vital to take action to reduce stigma and other nega- tive consequences of epilepsy and to focus on pro- moting positive attitudes to allow people with epi- lepsy to live rich and fulfilled lives in spite of their condition. National epilepsy organizations and their international bodies contribute to introducing change, both by offering services, training and edu- cation aimed at individuals, and by political actions and campaigns to make their voices heard and to put epilepsy on the political agenda. Improved legis- lation regarding for example driving license regula- tions is important and actions aimed at raising awareness among political bodies and authorities is vital. Photo Finola Quinn EUCARE Marseille conference planning meeting: from left: Peter Dahlqvist, Seppo Sarkkulla, Jacqueline Beaussart The European Committee participates in EUCARE – (AISPACE), Andreas Habberstad and Thanos Covanis European Concerted Action on Research in Epilepsy – a joint project of ILAE and IBE in both the Management 11th European Conference on Epilepsy & Group as well as the EUCARE Political Action Group; the latter has as its focus activities within the European Society—Marseille 2008 Parliament and other European political bodies. Preparations for the European Conference New Members Action Plan on Epilepsy & Society The committee has introduced steps to support the devel- were ongoing during opment of new member organisations from 2007 until the 2007. The committee end of the term of office in mid-2009. It invited represen- worked on the confer- tatives from Armenia, FYR Macedonia and Albania to ence programme and attend its meeting in Athens on 11th November. The purpose other details in col- was to inform and to encourage the implementation of laboration with AISPACE, the French IBE member and initiatives to create new epilepsy organisations which, in with the IDM office. The theme of the conference in 2008 is Active Life and Epilepsy. Planned highlights included sessions on Epi- lepsy and Humour and Epilepsy in Contemporary litera- Bureau for Epilepsy: International ture. The UN Convention on the Rights of Persons with Disabilities was expected to stimulate lively discussion. A EUCARE Best Practise session with excellent speakers was also on the programme as well as parallel workshops in both English and French. The European Regional Com- mittee had also provided a significant amount of funding from its budget to make a number of bursaries available to help some delegates to attend the meeting.
27th International Epilepsy Congress Singapore 2007 Annual Report 2007 The Regional Executive Committee initiated and participated in one of the parallel sessions held during Ariel view of Athens the international congress in Photo: Ann Little Singapore, titled European and Asian Action to Improve Quality of Life, in collabora- tion with the IBE Regional Committee South East Asia. time, could become new IBE member associations. The committee believes that some progress has been made. The session focused on actions taken on both Euro- pean and Asian regional levels as well as at national level in order to improve Quality of Life for people
23
24 6 International Bureau for Epilepsy: Annual Report 2007 Czech Republic Spolecnost “E„ inRomania. oflife with people of epilepsy quality the the improvement of to contributing thus epilepsy; with allpeople for services quality high offering continued to iscommitted the clinic treatment epilepsy, of priate appro- and diagnosis accurate of importance the Knowing kilometres away. clinic have come from other regions, some asfar as 700 in September. Approximately 50% of those attending the itsopening the first months since clinicin in10 the seen been have 771 people so, even but, theclinic by provided services topay for the have epilepsy people with tunately, Unfor- medical as equipment. well as quality sionals, high ateam has of clinic met. The medical services as one of the most important issues to be quality for good need the identified Romania throughout Seven years of working directly (Netherlands). Fonds Epilepsie have beenpossible withoutthe support of Nationaal not This would -EpiCenter. Romania clinic in epilepsy Epilepsyin Romania -EpiRomania -openedthe first In September, the National Professionals Allied to Medicine’ came to its third and came Medicine’ and Professionals to itsthird Allied to of Education. The Grundtvig program – ‘Education for the Ministry with incollaboration Association Epilepsy ing professionals was organised in 2007 by Caritas Malta For the thirdyear running, an Association of People with ofPeople Association young and dedicated profes- dedicated and young in-service course for teach- with people with epilepsy epilepsy with people with but also on family members. members. family on also but cial effect not only on psyche of the person with the condition such events. It has been proven that these stays have a benefi- and abroadare so popu the country within both adults and children for association our by is staysorganized That why respite ofthe illness. quences periences and to learn how others deal with the social conse- municate with those who are in com- need to feel the condition illness or an people with Many bulletin. asaninformative functions treatment of epilepsy, medication and readers’ opinions. It also one of the important sources of current information about the Since 1991 wehavebeen publishingthemagazine Aura. is It public, other specialists, police and fire departments. the shortage of information ab ployment, etc. We have concentrated on a topical problem– into schools and colleges, partnerships and relationships, em- integration complicate Itcan consequences. itssocial through also illness but asan affects not only Epilepsy their urgency. epilepsy and theneed toalign these problems according to Spolecnost “E„ realizethe wide EpiRomania from all over Europe. profession medical for seminar invited to give a ‘patient perspective’ during atwo day also was Mario Dimech Mr. President, our 2007, During Epilepsy Association Caritas Malta the Malta Union of Nurses and Midwives. Midwives. and Nurses of MaltaUnion the ciation organised a seminar in collaboration with Asso- CaritasMaltaEpilepsy In November 2007 formulated. want was to trainers the train to itasatool use who Mentors for a out, ‘Guidebook’ carried work Malta, Germany Hungary. and Asa result of the final year.The partners forthis program arefrom lar. A neurologist is always present isalwayspresent at lar. A neurologist out epilepsy among teachers, the a similar position toshare ex- range of problems concerning als. Participants travelled travelled als. Participants
Deutsche Epilepsievereinigung Germany Besides the information we offer on ♦ Maintaining special information epilepsy, the focus of our work lies in and advice services for parents. improving awareness on epilepsy in ♦ National event on 5th October with the public and reducing negative atti- the theme “Epilepsy – don’t fall tudes and the social consequences over.” that may arise when epilepsy is diag- nosed. That aim is connected with ♦ Arranging a cooperative initiative supporting self-help groups financially for professionals (doctors, phar- as well as in structural issues. maceutical industry, health insur- We are very happy that, despite diffi- ances, etc.) cult circumstances, we had a very We also arranged a series of work- successful year. The most important shops covering a wide range of activities during the year included: themes and directed at various audi- Epilepsy Connections Scotland
During the year we produced three new leaflets: Non- Stirling, as well as having a band of volunteers growing Epileptic Attack Disorder, Epilepsy and Memory and also fruit and vegetables on our allotment – all of which have Dental Health Care as well as guidelines to help in proved to be extremely popular. Our Multicultural Project completing Disability Living Allowance Forms for adults also held a Dissemination Event to share the findings with epilepsy and a Home Safety Pack. from the report ‘Epilepsy, Culture and Religion: Working International Bureau for Epilepsy: Bureau for Epilepsy: International We ran glass painting events for Black Minority Ethnic with BME Groups in Glasgow’ produced by Farhat Khan. (BME) carers of people with epilepsy, adult art sessions, All of the above have been run in addition to our Field- drama classes, a Pantomime session for children, and a work, Befriending, Schools, Multicultural, Mainstreaming series of complementary therapy sessions in Glasgow and and Living Well with Epilepsy Projects.
At the Swiss Epilepsy Centre activities in 2007 were aimed at information about epilepsy. Themes ranged Swiss Epilepsy Centre from epilepsy in daily life, through teenagers with epilepsy and career training, to nursing and care of Zurich geriatric patients with epilepsy. The aim was to reach a
variety of target groups including education departments Annual Report 2007 and schools, churches, residential homes, rehabilitation clinics, general and specialised nursing schools. Special courses were organised by our nursing and pedagogic department for staff of other institutions involved in the care of people with epilepsy. The social department also organised evening informa- tion sessions on various aspects for parents of children the new “Epi prize”. This award, with a prize fund of with epilepsy. Swiss Francs 10,000 is awarded bi-annually to persons or The Swiss Epilepsy Foundation encourages and promotes companies that play an active role in the integration and / integration of people with epilepsy, one example being or employment of people with epilepsy.
25 26 8 International Bureau for Epilepsy: Annual Report 2007 Odense, Dnmark Denmark Epilepsy Association Danish ♦ ♦ ♦ ♦ ♦ Scotland Epilepsy Scotland cope. epilepsy with children of siblings how at we will look iscompleted, adolescents and children needs of this group is very valuable. Once the survey of the Documenting their relatives. and adolescents dren, chil- a of similar survey undertaking interest. We arenow areas political of identify of help results which the bers, mem- for adult conditions living asurvey on completed (DEA) Association Epilepsy the Danish 2007, During ♦ Activities in 2007: France Epilepsie EuroServices Royal College of Physicians and Surgeons ofEdin- Surgeons and Physicians of College Royal The information. toprovide new ways We found the UK and Ireland. of Council Epilepsy the Joint and on Epilepsy Group Cross-Party Parliament’s Scottish the nurses, specialist epilepsy by wasaided Our work Scotland. Transport department Government Scottish land-wide free bus pass. We worked closelywiththe scheme tohelppeople with epilepsy accessa Scot- We successfully campaigned for aless complicated communities. in local services will assistepilepsy health professionals looked at how Government policy A ‘Kerr in the Community’ membership amongpoliticians. It largest second has wasre-established. the lepsy Epi- on Cross-Party Group Parliament Scottish The inlaterlifetraining. epilepsy nurses and specialist epilepsy additional seeaspecialist, times to more callfor firstthe seizure shorter clinics, waiting campaignOur manifesto for newcandidates included Parliament. the Scottish year for election was This ness such as epilepsy. ill- achronic employment,with persons of guarding Representation’ relating to employment, or safe- A European Comparative St
conference for over 100 conference forover udy ‘Fear,Prejudiceand
Photo: tees and forums to which we might dispatch a representative. arepresentative. dispatch might we to which forums and tees commit- boards, association for posts political important Itisalso di association. the members to recruiting andvolunteers problems in finding Like most of the voluntary corps in Denmark, DEA is of Uganda on a projected funded by Danida. Association continuesWe to cooperatewith the Support Epilepsy the problems have not yet been solved. but made been have ofAEDs.Improvements substitution DEA has been working to change Danish law on generic Alasdair Allan MSP (who has epilepsy). MSP (whohas Alasdair Allan andsecondCo-Convener, Douglas-Scott Executive Susan Co-Convener EpilepsyScotland’sChief Mary MulliganMSP; SusanDuncan; epileptologist from NHSLothian ♦ ♦ ♦ ♦ tion fromtheirown health database. GPs. Doctors could download our epilepsy informa- burgh asked us to prepare direct online information for monthly information events held across the country. of peop services. Hundreds our A User Involvement Officer was appointed to develop Production of a Best Prac Best Production ofa sions foremployers and practical analysissessions. Development of the training department, with ses- and Caritas Malta Epilepsy Association. Association. CaritasMaltaEpilepsy and Budapest, Brainwave The Irish Epilepsy Association ployment’ in which the partners include Bethel in em- in collectives—discrimination nesses and public busi- ‘Epilepsies, EQUAL Programme European The Cross-Party Group on Epilepsy with guest speaker guest speaker onEpilepsywith Cross-Party Group fficult to recruit people to fill people to recruit fficult tice Guide for Employers. for Guide tice le attendeda series of
Latin America
LATIN AMERICAN REGIONAL EXECUTIVE COMMITTEE
Chair: Lilia Núňez Orozco, Mexico Vice Chair: Elza Marcia Yacubian, Brazil Secretary: Tomás Mesa, Chile Vice President: Carlos Acevedo, Chile (ex officio)
Lilia Nuňez Orozco
MEMBERS OF THE LATIN AMERICAN REGIONAL COMMITTEE
ARGENTINA CUBA PERU Asociación de Lucha contra la Epilepsia Capitulo Cubano de la IBE Peruvian Association of Epilepsy Tucumán 3261, 1189 Buenos Aires Hospital Psiquiatrico de la Habana Jr Castilla 678 E-101, Lima 32 Argentina. Ave Independencia No 26520 Peru. T/F: +54 114 8620 440 Reparto Mazorra T: +51 1460 7502 E: [email protected] Boyeras Contact: Dr Julio Espinoza. Contact: Mr Gonzalez Gartland. Ciudad Habana, URUGUAY: CP 19220 Associate Member: Asociación Uruguaya contra la Epilepsia Cuba. FUNDEPI 8 de Octubre 2610 T: +53 7811 057, F: +53 7451 512 Rocamora 4122 Montevideo CP 11 600 E: [email protected] Ciudad de Buenos Aires (148) Uruguay. Contact: Dr S Gonzalez Pal. Argentina. E: [email protected] T: +54 1141 270 233, ECUADOR Contact: Dr Alicia Bogacz. F: +54 1149 326 101 Centro Nacional de Epilepsia, APNE VENEZUELA E: [email protected] Berrutieta sn y Acevedo Venezuelan National Bureau www.cefundepi.org.ar (Sector la Gasca)Quito Torre Country Club Piso 6 Contact: Dr Silvia Kochen. Ecuador. Chacaito T: +59 3290 5405, F: +59 3225 90649 BRAZIL Venezuela. E: [email protected] Associação Brasileira de Epilepsia T: +58 212 951 5611 Contact: Dr G Pesantez. Rua Botacatu 740 CEP 04023-900 E: [email protected] or Vila Clementino, São Paulo Associate Member: [email protected] Brazil. Liga Tungurahuense de Control de la Contact: Mrs Adriana Loscher. T: +55 11 5549-3819 Epilepsia F: +55 11 5081-5005 Mera 5 - 14 y Sucre, 2 do Piso E: [email protected] Ambato Bureau for Epilepsy: International www.epilepsiabrasil.org.br Ecuador. Contact: Laura M F F Guilhoto. T: +59 3034 23097 Contact: Dr Luis Cordovilla. CHILE Asociación Nacional de Ligas GUATEMALA Chilenas contra la Epilepsia IBE Guatemalan Chapter Patriotas Uruguayos 2236 6a Calle 2-48, Zona 1 Codigo Postal: 6501205 Guatemala City Santiago de Chile, Chile. Guatemala. T: +56 2699 2288 , F: +56 2699 4084 T: + 50 2232 7258, F: +50 2251 4008 E: [email protected] E: [email protected] www.ligaepilepsia.cl Contact: Dr Henry Stokes. Annual Report 2007 Contact: Dr Jorge Forster MEXICO COLOMBIA Group “Acceptation” of Epileptics Fundación Instituto de Rehabilitación San Francisco 1384, 7º Piso B para Personas con Epilepsia - FIRE Col. Del Valle Barrio Ternera, Calle 1a. Mexico DF. 03100 Calle del Eden, Mexico Cartagena AA 604 y 5007, Colombia. T: +525 5520 03474 T: +57 56618 127, F: +57 56618 111 F: +525 5520 03452 E: [email protected] E: [email protected] www.epilepsiacolombia.org www.epilepsiahoy.com Contact: Dr Jaime Fandiño-Franky. Contact: Dr Lilia Núňez Orozco.
27 28 2 International Bureau for Epilepsy: Annual Report 2007 Epilepsia en Singapur Tomás Mesa recibiendo la nominación de Embajador de la ♦ Actividades Otras ♦ ♦ ♦ Singapur 27° CongresoInternacional deEpilepsia, que Ud. debeque Ud. saber Publicación de laIIEdición delLibro: Embajador de la Epilepsia. El Dr.TomásMesa, de Chile, recibe la nominación de Volunteer Award). obtiene el premio de voluntariado del IBE 2007 (IBE con Epilepsia, del personas rehabilitación para dación Ligada por Colombiana ylaFun- laEpilepsia contra La Sra Margaret Fandiño-Merz, de Colombia, postula- pos de discusión. gru- sesión de en presentado en Epilepsia, Alternativa noamericana de ILAE integraron el panel de Medicina Núñez, junto con dos miembros de la Comisión Lati- ylaDraLilia IBEdeUruguay La Dra Alicia Bogacz, Comité LatinoamericanodelIBE
.
Epilepsia: lo lo Epilepsia: Braga, Uruguay. Braga, Medina, Honduras;Carlos Acevedo, Chile; and Patricia Bogacz, Uruguay; Manuel Campos, Chile; Marco Tulio Alicia Colombia; (IBE President); Franky, Fandiño Jaime (IBE Office); Lilia NúñezOr Little Ann Chile; Mesa, Tomás Brazil; Guilhoto, Laura inSingapur: Latinoamericano Comité del Reunión IBE en sesiones plenarias. temas interésincluyen de para el programa preliminar donde se Se hizo la visita deinspección yel enMarzo. Montevideo en reunión adicha asistió quien LiliaNúñez, IBE, Dra de fuera la presidenta delComité LA co-chairs los queunode Se decidió Montevideo 2008. reunión organizativadel 5°LACE la en primera Participación Epilepsia - Montevideo 2008 ♦ ♦ ♦ ♦ 5 o Congreso Latinoamericano de celebraciónaños de sus55 de vida. la motivo de con laEpilepsia, contra Chilena Liga región, aprovechando el Simposio Internacional de la zar y programar lasacciones dedicho comité enla Chile, anali- en Mayo para para 2008 Latinoamericano del IBE Comité Ejecutivo del reunión Se planifica Domini Republica Honduras, al IBE: seintegren para que latinoamericanos países asociaciones de pacientes conepilepsiaen diversos Se han hecho gestionescon personas que encabezan News. Epilepsy International Se publicó un artículo sobre Trabajo y Epilepsia en epilepsia. con las personas diño, logró la aprobación de una legislación a favor de El IBE de Colombia, encabezado porel Dr Jorge Fan- Informe
ozco, Mexico; Susanne Lund
2007 cana, Bolivia, Paraguay.
Group ‘Acceptation’ of Epilepsy Mexico ♦ The association arranges an annual program of information sessions, which are held on the first Saturday each month, with average attendance of 200 persons. ♦ There is also an annual program of psychological support with group therapy, provided 3 times each month, to build self confidence and to improve under- standing of the consequences of epilepsy for persons with epilepsy, their rela- tives and friends. ♦ We provide information on epilepsy to the general public through posters lo- cated in Metro Stations of Mexico City. ♦ A new edition of the book Clinical Handbook on Epilepsy for Lay People, written by Dr Lilia Núñez-Orozco was published. ♦ Dr Núñez-Orozco participated in the session Alternative Medicine in Epilepsy during the 27th International Epilepsy Congress in Singapore, June 2007. ♦ Organization of the 2nd Congress of the Mexican Chapter of IBE in Guadala- jara with a 3-day program and attendance of 350 persons from different cities of the country representing support groups for people with epilepsy.
ach year we organise a programme of activities for a special E epilepsy week to promote awareness and to improve the FUNDEPI quality of life of people with epilepsy. This year we tried to Argentina involve other hospitals in Argentina to make it a national event. ♦ We encourage health departments to address the needs of peo- ple with epilepsy, including awareness, education, diagnosis, treatment, care and prevention. ♦ We advocate for new epilepsy legislation in respect of treat- ment and anti-discriminatory regulation. ♦ We analyze the social and economic situation of 3,217 people with epilepsy who attend our centre. The ability to hold down a suitable job is a pivotal step in the rehabilitation of the persons with epilepsy. The rate of unemployment is around three times higher than in the general population. So, however impressive scientific and thera- peutic progress may be, its full effect cannot be achieved without tackling the complex problems of the social and economic aspects of epilepsy, which are far from being solved. International Bureau for Epilepsy: Bureau for Epilepsy: International
Venezuelan League Against Epilepsy—LIVECE Venezuela During 2007 educational campaigns on various topics, with spe- Caracas, Venezuela cific emphasis on Neurocysticercosis in those areas where research has shown a high prevalence of epilepsy caused by parasites, took place using radio and the Press. Screening consultations, diagnostics, control, treatment, and fol- low up visits of people with epilepsy (children and adults) take Annual Report 2007 place in LIVECE’s office on a daily basis. Workshops on epilepsy, its definition, causes, prevention, diagno- sis and treatment are planned in the Jardín Botánico de la Univer- sidad Central de Venezuela’s auditorium for consultants and GPs, nurses, and other professionals. The Social Security Program, involving the supply of AEDs at cost price, was set up by specialized pharmacological laboratories. This year, plans were drafted for the establishment of the Venezue- lan Academy against Epilepsy, in conjunction with the Venezuelan Society of Neurology and selected expert Professors in the field.
29 30 4 International Bureau for Epilepsy: Annual Report 2007 contra laEpilesia ployment skills. em- assistthem obtaining and in level of education their give an opportunity to people with epilepsy to improve to a“House for withEpilepsy” toobtain People paign acam- on concentrated were 2007 during AUCLE, lepsia, laEpi- contra Uruguaya the activities Asociación of The las deficiencias neuro-psico-relacionales de los pacientes sobre que actuar permitiría terapéutica alternativa ciencia, pósito dedifundirconocimientos dentroeste de arte- (NEUROPSICOMOTRICIDAD)motricidad el con pro- Desarrollo y laPsico- del elámbito de laNeurología en laformación de convenio profesionales que un posibilite Organización Internacionalde cido conjuntamente con la Delegación Ecuatoriana de la estable- Nacional epilepsia, ha el Centro de con Epilepsia la de mejorar elpropósito Con Asociación Uruguaya Uruguay PsicomotricidadParís, de calidad de vida al paciente the gala dinner. Our picture shows the AUCLE fundraising team attending ♦ ♦ lado su intención de mantener esta ayuda de carácter social. social. carácter de ayuda esta mantener de intención lado su de Discapacidades,organizaci micos. Conviene también señalarqueelConsejo Nacional medicación gratuita apersonas de escasos recursos econó- Promising Strategies, lo cual nos ha permitido entregar al International Bureau for Epilepsy dentro de su proyecto de algunoslaboratorios farmacéuticos y de forma especial todo estetiempo yesto ha sido posible gracias alaayuda Nacional de Epilepsia se ha mantenido constante durante El banco de medicamentos conelquecuenta elCentro salud.y de tivos que se han difundido a través de centros educativos educativo también se han co cerebral en el paciente conepilepsia. Dentro del aspecto se trataronsobre dificultade Epilepsia, organizaron un even conjuntamente conlaAsociación de Padres de Niños con Durante elmes de Abril, elCentro Nacional de Epilepsia, y también enlaprevención de dichas dificultades. IBE EcuadorChapter the UruguayanGolfClub,whichwas very successful. The principal fundraisingeventwasa gala dinner in on TV shows. and inmagazines wereinterviews There s afectivas y la plasticidad s yla afectivas plasticidad nfeccionado folletosinforma- ón gubernamental, ha seña- to internacional enel que
North America
NORTH AMERICAN REGIONAL EXECUTIVE COMMITTEE
Due to the number of members in the region, there is no elected Regional Executive Committee for North America. Instead representatives from the IBE member asso- ciations meet informally and communicate largely through email.
Mary Secco, Vice President North America
MEMBERS OF THE NORTH AMERICAN REGIONAL COMMITTEE
CANADA USA Canadian Epilepsy Alliance/Alliance Canadienne de Epilepsy Foundation l'Epilepsie 8301 Professional Place 234 Riverside Drive Landover, MD 20785-2238 London, Ontario USA. Canada N6H 1E6. T: +1 301 459 3700 T: +1 519 433 4073 F: +1 301 459 0340 F: +1 510 433 4079 E: [email protected] Email: [email protected] www.epilepsyfoundation.org www.epilepsymatters.com Contact: Mr Eric Hargis Contact : Ms Mary Secco Associate Members: JAMAICA The Anita Kaufman Foundation Jamaican Epilepsy Association PO Box 11 Andrew Memorial Hospital New Milford 27 Hope Road New Jersey 07646 Kingston 10 USA. Jamaica. W I T: +1 201 655 0420 T: +876 9688 274 F: +1 866 303 3219 E: [email protected] E: [email protected] Contact: Mrs Nora Perez www.akfus.org Contact: Mrs Deborah Josephs
Epilepsy Foundation of New Jersey 429 River View Plaza Bureau for Epilepsy: International Trenton, New Jersey 08611 USA. T: +1 6090 392 4900 F: +1 609 392 5621 E: [email protected] www.efnj.com Contact: Mr Eric Joice Annual Report 2007
31
32 6 International Bureau for Epilepsy: Annual Report 2007 each model. The calendar alongwith rations and had uplifting messages from calendar was sponsored by localcorpo- known women in a garden setting. The well- twelve islands featuring ofthe calendar ‘HowDoes est with the production of our 2007 inter- public and media great We raised raising efforts of theJEA. local CHASE FUND was made possible by support from the ‘home’for our membersto visit.This an administrative secretary and a We nowhavepermanent a with office our Secretariat at of opening the October with in 2007 economy.We achieved our maingoal in the downturn the to rate support due were achieved, despite reduced corpo- (JEA) Association Epilepsy Jamaican the of the many of goals 2007 During Jamaica Jamaican EpilepsyAssociation Andrews Hospital. Andrews Hospital. My Garden Grow’ Grow’ My Garden and byfund- the largest single gathering single with people largest of gathering the Epilepsy, for National Walk annual on March 29 to participate in the second 8,000 people gatheredin Washington, DC, of crowd energized upbeat, highly An treatment options. and reduce side effects with newer control they may be able to improve seizure that, even if theyarereceiving treatment, toletthem and know epilepsy with people ( program called what can be done and has launched a new being done for people withepilepsy and to close thetreatment gapbetween whatis hard is working Foundation Epilepsy The vices, education, advocacy and research. www.NoMoreSeizures.org North AmericanRegion and cure epilepsy through ser- through epilepsy cure and ences, andto prevent, control inalllifeexperi- participate to areable seizures with people that to ensure epilepsy with the over 3 million Americans years and works asa partner for 40 for nearly existence in been has Foundation Epilepsy The USA Epilepsy Foundation Jamaica. carein epilepsy improve to maican League AgainstEpilepsy the with Ja- toworkclosely tinue members,our the JEA will con- member executiv With the guidance of our seven toourmembers.ling counsel- discounted offer now we psychologist and a of psychiatrist kindness the Through workforce. assist with job will and members to our ration Associates,offers which freeprepa- CV resourcecompany, Hamilton Knight The Association teamed upwith human epilepsy. has helped to spread the word about epilepsy, with horse a Jamaican about Flash’, to Go ‘Way book children’s our No MoreSeizures Activities inthe ) to reach placement inthe e committee and with epilepsy. epilepsy. with withimportant, near-term forpeople benefits therapies new innovative of development Research Foundation is accelerating the Therapy Grant program under the Epilepsy addressing epilepsy intheelderly. The New launched a new targetedresearch program also Foundation The investigators. clinical grants for pre-doctoral,post-doctoral and provided funding for 45 fellowships and year,the Epilepsy In the Foundation past impress segment of the population. ofteens - ahard-to- attention the catches in a waythat epilepsy about information over 25,000 students last year with reliable reached epilepsy, DVD about a cutting-edge across the US. The program, which includes curriculum, by local Epilepsy Foundations in classrooms, aspart ofthe school health Facts Seizures and You: Take Charge of the for research. funds raise to increase awareness adesire by the US, drawn from throughout travelled People inUS history. epilepsy
is aneducation program conducted 2007 about epilepsy and to to and epilepsy about South East Asia
SOUTH EAST ASIA REGIONAL EXECUTIVE COMMITTEE
Chair: PK Sethi, India Vice Chair: HV Srinivas, India Secretary: VS Saxena, India Vice President: Anchor Hung, Hong Kong
PK Sethi
MEMBERS OF THE SOUTH EAST ASIA REGIONAL COMMITTEE
BANGLADESH INDIA NEPAL Bangladesh Epilepsy Association Indian Epilepsy Association Nepal Epilepsy Association 3/1 Lake Circus Kalabagan No. 613, 15th Cross, 1st phase Narayan Gopal Sadak, 736/45 Dhaka 1205 Bangalore Orange House Bangladesh. 560078 Lazimpat, Kathmandu Nepal. E: [email protected] India. T: +977 1441 2945 Contact: Dr MA Mannan. T: +91 80 - 26635693 F: +977 1441 2945 E: [email protected] HONG KONG E: [email protected] www.indianepilepsyassociation.org The Hong Kong Epilepsy Contact: Kabindra Man Pradhan Contact: Dr HV Srinivas. Association SRI LANKA G/F, Wang Lai House INDONESIA Epilepsy Association of Sri Lanka Wang Tau Hom Estate, Kowloon PERPEI 10, Austin Place Hong Kong. Jalan Jakarta 10 Colombo 8 T: +852 9511 0119 Malang 65113 Sri Lanka. F: +852 2794 7178 Indonesia. Contact: Ms Mangala Samarawickrama. E: [email protected] T: +62 341552706 www.hkepilepsy.com F: +62 341355982 THAILAND Epilepsy Association of Thailand Contact: Mr Ted Chiu. E: [email protected] 74/29 Ramintra Soi 8, Ramintra Road Contact: Dr Achdiat Agoes. Associate Member: Bangkhaen Enlighten Hong Kong Ltd Associate Member: Bangkok 10220 Room 12A Yayasan Epilepsi Indonesia Thailand.
Shun Pont Commercial Building Jl. Hang Jebat II/2 T: +6681 6555358 Bureau for Epilepsy: International No. 5-11 Thomson Road, Wanchai Kebayoran Baru F: +6627 165994 Hong Kong. Jakarta Selatan 12120 E: [email protected] T: +852 2820 0111 Indonesia. Contact: Dr Araya Charuvanij. F: +852 2820 0113 T: +62 217251710 E: [email protected] F: +62 217247366 www.enlightenhk.org Contact: Ms Ning Mahar Mardjono. Contact: Ms Veronica Tam Annual Report 2007
33 34 8 International Bureau for Epilepsy: Annual Report 2007 India Indian EpilepsyAssociation This has come after several years afterThis ofpetitions hascome several to the a licence. driving may issued with be people epilepsy of Ministry ofSurface Transport, ment of India, has finally sent its recommendation to the It is heartening to note that the Health Ministry, Govern- month. Information about epilepsy is also provided. and anaverage of 500 persons take part in thecamp each attend who AEDs is epilepsy free togiven all with people the camps began in February 1999. One months supply of its 100 Indian Epilepsy Association Tirupati Branch conducted sessions. in interactive part actively bypresenting personal experiences and taking Mumbai.participated in epilepsy October with People Conference of IndiaEpilepsy Association washeldin Annual two-day The doctors. for CME and programs stage plays and‘skits’, epilepsy quizzes forlaypersons, competitions forchildren, essay lectures, and with painting DaycelebrationsEpilepsy Nationalin wereheld November Activities oftheSouthEastAsia th monthly camp for persons with epilepsy in May; sothatcertain categories Regional Committee Saxena, India (Secretary,Regional Ex glon Lai,Taiwan (IBE Vice Presiden to intently listening delegates India; Pictured clockwise from topleft:Michael and to foster closer tiesbetween regarding epilepsy; and to encourage those attending to form newfriendships faced by people withepilepsy; toinve challenges and criticalissues symposium identify the of wasto The purpose Singapore. tosupport several to members totravel used from region the tionalEpilepsy Congress inSingapore. large A portion ofbudget funds were Interna- 27th the their Carers, and during with forPeople Symposium Epilepsy The Regional Committee playedanactive Special Symposium inSingapore the coursesuccessfully. completed has andthe University first students of batch Bangalore with collaboration in Association Epilepsy “Diploma in Epilepsy Care” has been started by Indian A one-year DistanceEducatio India”. Actof “ThePerson with Disability the under and willderive benefits with“Persons Epilepsy” Disabling as of AEDs. Thegroup will be known large doses and polytherapy seizures requiring frequent of because disabled aremade toidentify Efforts years. of ber free for a num- they are seizure even when licences driving are denied epilepsy with present people authorities. At local and international peers. peers. international and local a presentation atthe symposium; Shun- t PacificRegion)Western and Vinod stigate in depth upcoming information ecutive Committee South East Asia). South Committee ecutive A ‘skit’ is enacted duringNational Epilepsy Day Alexa, Austria and Carol D’Souza, part in the verysuccessfulin Specialpart people with epilepsy whoare n Programmeleadingtoa 2007 Western Pacific
WESTERN PACIFIC REGIONAL EXECUTIVE COMMITTEE
Chair: Hidemoto Kubota, Japan Vice Chair: Andrew Pan, Singapore Secretary: Yuan-fu Tseng, Taiwan
Hidemoto Kubota MEMBERS OF THE WESTERN PACIFIC REGIONAL COMMITTEE
AUSTRALIA CHINA MONGOLIA Joint Epilepsy Council of Australia Ltd China Association Against Epilepsy Mongolian Epilepsy Association HSUM PO Box 562, Burnie Rm. 402, Huaxiangshangwu Bldg. PO Box 48/28,. Tasmania, 7320, Australia. #100 Dengshikou Ave. Ulaanbataar, Mongolia. E: [email protected] Beijing 100006, China. T: +976 9917 7153 Contact: Mrs Kay Elphinstone. T: +861 065 143 125 E: [email protected] F: +861 065 250 423 Contact: Dr A Tovuudorj. Associate Members: Email: [email protected] Epilepsy Association of South Australia NEW ZEALAND www.caae.org.cn and the Northern Territory Inc. Epilepsy New Zealand (ENZ) Contact: Dr Shichou Li. PO Box 12, Woodville PO Box 1074, Hamilton South Australia 5011, Australia. JAPAN New Zealand. T: +61 8844 56131 Japan Epilepsy Association Inc. T: +64 7834 3556, F: +64 7834 3553 F: +61 8844 56387 4F Zenkokuzaidan Building 2-2-8 E: [email protected] E: [email protected] Nishiwaseda Shinjuku-ku www.epilepsy.org.nz www.epilepsycentre.org.au Tokyo 162-0051, Japan. Contact: Mr Frank Gouveia. Contact: Mr Robert Cole. T: +81 3320 25661 F: +81 3320 27235 PHILIPPINES Epilepsy Association of Western Epilepsy Awareness & Advocacy Inc. E: [email protected] Australia (Inc) 151-B Scout Rallos Extension www.jea-net.jp Centre for Neurological Support Sacred Heart, Kamuning Contact: Mr T Tadokoro. The Niche, Suite B, 11 Aberdare Road Quezon City, 1103, Philippines. Nedlands WA 6009, Australia. Associate Member: T: +632 414 4638 T: +61 8934 67699 Epilepsy Hospital Bethel E: [email protected] F: +61 8934 67696 27-4 Hata-Mukaiyama-Minami Contact: Mrs Jeanne Desirée Khonghun. E: [email protected] Kitahase, Iwanuma City 989-2455 www.epilepsywa.org.au Japan. SINGAPORE Contact: Mr David Sharp. T: +81 2232 41211 Singapore Epilepsy Foundation F: +81 2232 42265 149 Rochor Road Epilepsy Action, Australia #04-06 Fu Lu Shou Complex E: [email protected] Bureau for Epilepsy: International PO Box 879 www.bethel-japan.com 188425, Singapore. Epping NSW 1710, Australia. Contact: Mr T Soga. T: +65 3344 302 F: +65 3344 669 T: +61 2985 67087 E: [email protected] F: +61 2986 94122 KOREA www.epilepsy.com.sg E: [email protected] Korean Epilepsy Association Contact: Ms Grace Tan. www.epilepsy.org.au Department of Neurology Associate Member: Contact: Ms Carol Ireland. Ajou University Hospital Suwon 443-721 Epilepsy Care Group (Singapore) Epilepsy Australia South Korea. No 26 Dunearn Road (Level 2) 818 Burke Road, Camberwell T: +82 312 194 411 Singapore 309423. Victoria 3124, Australia. F: +82 312 166 380 T: +65 6358 0566, F: +65 6358 0567 T: +613 9805 9111 E: [email protected] E: [email protected]
F: +613 9882 7159 Contact: Dr Kyoon Huh. www.epilepsycare.org Annual Report 2007 www.epilepsyaustralia.net Contact: Mr Sherman Goh. MALAYSIA Epilepsy Queensland Malaysia Society of Epilepsy TAIWAN PO Box 1457 Jabatan Neurologi Taiwan Epilepsy Association Coorparoo BC 4151 Kuala Lumpur Hospital B1F, #41, Alley 66, Lane 155 Queensland 505086 Jalan Pahang Tun-Hwa N. Road Australia. Kuala Lumpur Taipei 105, Taiwan. T: +617 3435 5000 Malaysia. T: +886 2251 49682, F: +617 3435 5025 T: +603 2615 5405 F: +886 2251 49687 E: [email protected] E: [email protected] E: [email protected] www.epilepsyqueensland.com.au www.epilepsy.org.my www.epilepsyorg.org.tw Contact: Mrs Helen Whitbread Contact: Dr Hussain Imam Contact: Yuan-Fu Tseng
35 36 2 International Bureau for Epilepsy: Annual Report 2007 ♦ ♦ Breakdown ofdelegates: children young and cameTaiwan. Some their delegates with membersfamily Japan, Malaysia, Mongolia, Philippines, Singapore and Indonesia, India, HongKong, countries: Argentina, Austria, In total,were aboutthere 200 participantsfrom 11 monies of persons with epilepsy in Taiwan. dresses epilepsy inthe workpl also showcased its video production that ad- sociation As- Epilepsy Taiwan The India. in awareness lepsy entation onits activitieson efforts in and raising epi- The Indian Epilepsy Association arrangedavideo pres- e their to share opportunity the Questions and Answers se during engaged were actively Participants Symposium. There were lively discussions and exchanges during the ♦ ♦ ♦ ♦ ♦ ♦ ♦ ♦ Topics and Speakers with oflife the people epilepsy: for impactquality on their expertise and experiences onissues identified to to learnfrom each other. The panel of speakers shared fessionals, employers and regulators to network and with epilepsy, their carers, volunteers, healthcare pro- The symposium also provided a platform for people epilepsy. with for people life the of on quality impact ofissues which awareness in Singapore in July.The aim wasto raise greater Congress Epilepsy International the with conjunction in washeld Carers, which Their and Epilepsy with Group jointly organised a Symposium forPeople Care the Epilepsy and Foundation Epilepsy Singapore Symposium forPeoplewith Epilepsy network and make new friends. to the with opportunity experience, the enjoyed Everyone ♦ ♦ 5 Caregivers Persons with epilepsy 25% 60% Relationships Marital Family and Ms Anchor Hung Perspective) (Singapore Driving Mr Edmond Pereira Dr Marshal DrMarshal Hsih Mo Song Driving (Overseas Experience) Mr Singapore in Opportunities Employment Mike Ms Glynn Employment -Taiwan'sexperience Lieng Education and Epilepsy Sheau and Epilepsy Children toEpilepsy Introduction Yea 5 Volunteers and Healthcare professionals. 15% Women and Epilepsy and Women Committee Western Pacific Activities oftheRegional Dr Andrew Pan
Dr Choong Chew Thye Chew Choong Thye Dr xperiences and encounters. Dr Mike Hills Dr Andrew Pan Andrew Dr ssions and alsotookthe ace and with personal testi- and withpersonal ace
the symposium symposium the Bottom: left) from (second Top: symposium. number of bursaries to delegates wishing to attend the Western Pacific. Both Regi Committee South East Asiaand theRegional Committee The symposium waspromoted jointly by the Regional their time and efforts to ensure asuccessful event. andthe many volunteers who gave freely of assistance; IBE foritsgrant;ILAEandtheIDM officefortheir Janssen Cilag andUCB for sincere appreciation and thanks to sponsors namely, GSK, committ The Pan. Andrew Dr Care Group of Singapore, and was chaired by Epilepsy resentatives from Singapore Epilepsy Foundation and The Symposium Organising Committee comprised rep- laughter. ated withtheir home countrie associ- to sing songs tothestage took present participants entertainment, the of As part all participants. for Centre Welcome Dinner held atthe Raffles CityConvention finale was the Symposium, the After along day atthe delegates from Taiwan including Dr Andrew Pan three delegates from Singapore who attended attended who Singapore from delegates three onal Committeesprovided a their generousdonations; s, leading to much fun and ee would like to to record its like ee would 2007 Epilepsy Association of South Australia and the Northern Territory Australia This poster was produced for the association, as a pro bono initiative, and was awarded an Australian Graphic Design Award. It will now be placed in Bus Shelters across Adelaide for twelve months, and free of charge, to create Epilepsy Awareness in South Australia. The value to the association is in access of Australian Dollars 33,000.
and household economic burden of epilepsy in a large Epilepsy Action Australia population in Australia. The recruitment phase will run for two years with a 12-month follow up period. The Australia study will help government, healthcare practitioners and service providers such as Epilepsy Action, Australia to Collaboration in Western Australia make more informed decisions about service design, pol- As a first step in collaborative services in the non-medical icy, funding, treatment and medical management. services sector, Epilepsy Action, Australia and the state- based Epilepsy Association of Western Australia East Timor (EAWA) have joined forces to work collaboratively to Epilepsy Action, Australia has been involved in the East offer a comprehensive range of education and support Timor National Training Program since 2005 with Prof services including seizure-management planning, first-aid Ernie Somerville from Sydney’s Prince of Wales Hospi- training for seizures, education programs, counselling and tal. Epilepsy Action continues to refine and deliver the peer support, to the people of Western Australia. community leader education component of this program despite numerous challenges presented as a result of the Research collaboration
recent civil unrest and change of government. The aim is Bureau for Epilepsy: International Epilepsy Action, Australia has teamed up with The to raise awareness that epilepsy is a medical condition and George Institute for International Health to take a compre- to encourage the utilisation of the free, newly developed hensive look at the lives of people newly diagnosed with epilepsy services set up in local clinics across the country. epilepsy and explore the incidence, psychosocial impact
Singapore Epilepsy Foundation Singapore
The highlight of the year was undoubtedly hosting the 27th International Epilepsy Congress in July and much of the focus of Singapore Epilepsy Annual Report 2007 Foundation (SEF) was on preparations for the event. We were delighted to welcome so many members from other countries and were pleased at the great success of the meeting. As the year progressed we also looked to de- velop plans for 2008, some of which include: ♦ The HOPE Programme - collaboration with UCB with a planned launch in July 2008. ♦ Disability Information and Referral Centre (DIRC) - A public forum or- ganised jointly between SEF and DIRC. ♦ Working with Ministry of Education to promote awareness of epilepsy amongst primary and secondary schools and junior colleges. ♦ Plan of activities for the Persons with Epilepsy & Carers Support Group.
37 38 4 International Bureau for Epilepsy: Annual Report 2007 Chair: Editors Network Members: Chair: Commission fortheRegions Members: Chair: Enlargement Commission Commissions, TaskForcesand Networks [email protected] Abdulaziz Alsemari Vice President Eastern Mediterrane [email protected] Zenebe Gedlie Damtie Vice President Africa [email protected] Lee Philip President Immediate Past [email protected] Glynn Mike Treasurer [email protected] Eric Hargis Secretary General [email protected] Lund Susanne President Committee Executive International www.ibe-epilepsy.org [email protected] 1210 8450 F: +353 1210 8850 T: +353 Ireland. 18 Dublin Headquarters International Central OfficesandContacts [email protected] [email protected] Stillorgan Priory11 Hall Bureau for Epilepsy International Executive Director Little Ann [email protected] [email protected]
Philip Lee Philip Robert Cole Thanos Covanis
Mike Marshal Mo-Song Hills and Hsih Mike Moshé Nico Mesaand Tomás Eric Hargis, an [email protected] Anchor Hung Vice President SouthEast Asia [email protected] Carlos Acevedo Vice President LatinAmerica [email protected] Thanos Covanis Vice President Europe Congress Office Members: Members: Chair: Force Task Driving Members: Chair: Force Website Task Members: Chair: Election Task Force [email protected] Martin JBrodie, ILAE Treasurer [email protected] Moshé,Nico ILAESecretaryGeneral [email protected] Peter Wolf, ILAEPresident ILAE Representatives [email protected] Shung-lon Lai Vice President Western Pacific [email protected] mhills@waikato. [email protected] www.epilepsycongress.org [email protected] 20 120 567 T: +353 Ireland. 18 Dublin Stillorgan PrioryHall 7 IBE/ILAE Congress Secretariat
Shung-lon Lai Shung-lon Mike Glynn Hills Michael Eric Schmedding and Marshal Mo-Song Hsih Hsih Mo-Song Marshal and Schmedding Eric Ken Lowenberg and Paul Sharkey Lee Philip and Hsih Mo-Song Marshal Regional Executive Committees
Africa North America Chair: Zenebe Gedlie Damtie Canada Representative: Mary Secco [email protected] [email protected]
Vice Chair: Augustine Mugarura Jamaica Representative: Nora Perez [email protected] [email protected]
Secretary: Anthony Zimba US Representative: Eric Hargis [email protected] [email protected]
Eastern Mediterranean South East Asia Chair: Manar Sawan Chair: PK Sethi [email protected] [email protected]
Vice Chair: Muhammed Aldossari Vice Chair: HV Srivinas [email protected] [email protected]
Secretary: Najib Kissani Secretary: VS Saxena [email protected] [email protected]
Ex Officio: Anchor Hung (VP South East Asia) Europe Chair: Peter Dahlqvist Western Pacific [email protected] Chair: Hidemoto Kubota Vice Chair: Thanos Covanis [email protected] [email protected] Vice Chair: Andrew Pan Secretary: Andreas Habberstad [email protected] [email protected] Secretary: Yuan-fu Tseng Member: Seppo Sarkkula [email protected] [email protected] Ex Officio: Shung-lon Lai (VP Western Pacific)
Latin America Chair: Lilia Núňez Orozco [email protected]
Vice Chair: Elza Marcía Yacubian [email protected]
Secretary: Tomás Mesa [email protected]
Ex Officio: Carlos Acevedo (VP Latin America) International Bureau for Epilepsy: Bureau for Epilepsy: International
Other Contacts
EUCARE Global Campaign Against Epilepsy EUCARE Office “Out of the Shadows” 11 Priory Hall IBE Co-Chair: Philip Lee Stillorgan c/o New Anstey House Dublin 18 Gate Way Drive Ireland Yeadon T: +353 1 2108850 Leeds LS19 7XY F: +353 1 2108450 UK. [email protected] [email protected] Annual Report 2007 www.eucare.org Membership Enquiries IE News Editor All enquiries about IBE membership should be addressed Editor: Carlos Acevedo to IBE International Headquarters in Dublin. [email protected]
Co-ordinator: Ann Little IBE Webmaster [email protected] For all enquiries relating to the IBE website please contact Contact the Co-ordinator for subscription details. IBE International Headquarters.
39 6 International Bureau for Epilepsy: Annual Report 2007 International Bureau for Epilepsy Epilepsy for Bureau International T: ++353 1 210 8850 8850 1210 T: ++353 F: ++353 1 210 8450 8450 1210 F: ++353 [email protected] [email protected] www.ibe-epilepsy.org 11 Priory Hall 11 Priory Dublin 18 Dublin Stillorgan Stillorgan Ireland