Spotlight on Porto and Cartagena - International Bureau for Epilepsy

An ABC of PortoWhat to see and do before and after the conferencePis for Port, the ruby red fortifiedwine that takes its name from thecity of Porto.Wine produced in the Douro regionbegan to be fortified with brandy inthe 18th century to stop fermentationand to allow the wine to travelbetter. The result was Port and eventoday its production is restricted to the Douro valleyarea, at the mouth of which sits Porto.Ois for the Old Town, known as Caisda Ribeira. Atmospheric and fullof colour and life, this is the verysoul of Porto.is for river, the River Douro. WithRthe quaysides of the Ribeira districton one side and Cais de Gaiawith its multitude of port winelodges on the other, you can crossfrom one side of the river to theother using the pedestrian level ofthe breathtaking double-deckerPonte Dom Luiz (Dom Luiz bridge).The conference Social Evening will be held in thevery special venue Três Séculos within Taylor'sPort lodge, one of the world-famous port wine cellarsof Porto. Sitting on a hill overlooking the river,Três Séculos promises to be a great location for avery enjoyable evening.Tickets cost €35 and the price includes a port winereception, tour of Taylor’s warehouse and a seateddinner. Tickets can be bought when registering orby email at registration@epilepsycongress.org.The wonderful district of Ribeira ismade up of medieval streets andnarrow shaded alleyways. It is acrumbling but fascinating place,ending at a riverfront square - thePraça da Ribeira. With photogenictraditional boats moored at the quayside, overlookedby colourful ancient houses, this is the mostpicturesque spot in the entire city and the placeeveryone loves - UNESCO did too, and declared thearea a World Heritage Site.Enjoy a cool refreshing drink, take in the uniqueatmosphere, and don't forget to bring along yourcamera. Then return at night when the place isespecially lively. There are dozens of cafés, bars,and restaurants sheltered under medieval arches,making it the most popular district in the city foreating and drinking.From the Cais de Gaia side you can get fantasticviews of the city’s skyline, with Cais da Ribera onthe other side, the Dom Luiz bridge soaring highabove and the picturesque port wine boats, used totransport port barrels down river, moving gently intheir moorings along the quayside.Of course, R is also for river cruise, of whichthere are several to choose from!TOis for tram or train — although in thiscase we are referring to the Funiculardos Guindais, Porto’s cable car.The funicular runs down a steep clifffrom Batalha to the quayside atRibeira. Originally constructed to facilitatethe movement of cargo, particularlyport wine, the funicular is nowpromoted as a tourist attraction.is for Ocean, the Atlantic Ocean. Foz isone of the most sophisticated districtsof Porto, with seafront bars, cafés andrestaurants. It has a village-like feel,but eventually when the waterfrontavenue becomes Avenida do Brasil, thewide open spaces, big attractivehouses, beaches and cafés give it thelook of a resort.While the journey is short, at just three minutes,after emerging from the tunnel at the top you aregiven a panoramic view of the city.The cable car runs from 8am to 8pm on weekdays,later at weekends, and you can use the Andanteticket, allowing a trip on the funicular to be combinedwith a journey on the Porto Metro and onselected bus routes.Most of the beaches here are dotted with outcropsof rocks, so they are not recommended for swimming.But they're a great escape in the city, allowingyou to lie on the sand and get your feet wet inthe warmer summer months. To reach Foz takebus number 1 from the centre of the city or numbers21 or 24 from the Boavista roundabout.6 International Epilepsy News 2010

From a very full and excitingprogramme, here is a smalltaste of the sessions and otheractivities that will take place inPorto. It promises to be agreat meeting!European RegionalCommittee MeetingIBE Full and Associate Membersin Europe are encouraged tosend representatives to attendthe Regional Committee Meetingon Wednesday 25th August.Agendas and other informationwill be circulated to all Europeanmembers well in advance of themeeting date.Launch of Euro ReportThursday 26th August08:00—09:00One of the most significant events atthe conference will be the launch of theEuropean Report on Epilepsy of theGlobal Campaign Against Epilepsy. Thislong-awaited important report, which isbeing published by the WHO, will beofficially launched by Dr Matt Muijen,WHO Regional Advisor for MentalHealth.The report will bring together, for thefirst time, all available evidence fromthe region on the epidemiology, etiologyand management of epilepsy and will bea valuable tool for those working forchange at national level.Opening CeremonyWednesday 25th August At 19:00All conference delegates are invited to the OpeningCeremony Reception at Santa Casa da Misericórdia doPorto. This building, which belongs to the Misericórdiacharitable foundation, holds an important collection ofpaintings donated by benefactors. These are on displayin its picture gallery, located in a former open air interiorpatio which was roofed over in the 19th centuryand recently restored.Session HighlightsEpilepsy Brain and MindPhotosensitivity and EpilepsiesInfluencing PolicyEthics in EpilepsyWorkshop HighlightsTraining for SuccessPersonal Development OpportunitiesDriving and EpilepsyYouth SessionSex, Drugs and Lifestyle ChoicesKaraoke EveningA fun event for the young, andyoung at heart, the Karaokeevent will be held after theOpening Ceremony.The venue is theTriplex Bar, whichis just a fiveminute walkfrom theconference hotel.The fun kicks offat 20:30.International Epilepsy News 20107

Promising Strategies2010UGANDAGoat Rearing EnterpriseIn rural Uganda goat rearing ranks high in animal husbandry and the averagehousehold will own 4 or 5 goats. In addition to generating income throughgoat’s milk and goat meat, goats are considered as a symbol of wealth andare used as dowry payments in arranged marriages.This project will assist 48 people with epilepsy. Each participant will be providedwith a pregnant goat and receive instruction on its care. In return eachperson will be asked to give back two goats to the project within a period of2 years. As most goats produce twin kids, this should be easily achievable.The young goats will then be used to extend the program further. Profits willprovide a means of independent living and improve self esteem for manymembers of the Epilepsy Support Association of Uganda.RE-A new concept in retailingARGENTINAThe concept of the second hand shop is not new:it’s a tried and tested way of generating funds forcharities around the world. However, the plans EpilepsyNamibia has for RE– will broaden the scope ofthis enterprise to greateffect.RE-ReuseReduceRecycleEpilepsy NamibiaNAMIBIARE– will follow the structureof any commercialretail outlet with a shopmanager, sales assistantsand stock controllers. Peoplewith epilepsy will begiven preference in theselection of staff and theshop will also act as anawareness and informationcentre. Sales training willbe provided for all RE–employees.In addition, it is envisagedthat others not directlyinvolved in RE– will havethe opportunity to createnew employment opportunitiesthrough the creationof spin-off businesses,such as laundry and alterationservices.A Legal BriefMonitoring the newly introduced Argentinean legislationon epilepsy, National Law of Epilepsy N o 25.404,the FUNDEPI association will study how successfullythe law is being implemented. The association willmonitor, in particular: whether the new legislation has had an impact on thegap between diagnosis and treatment, the implementation of the legislation with respect toemployment issues, the situation for indigenous communities where theuse of traditional medicines still exists, implementation of educational programmes forhealth care professionals at primary level, whether the law has had an impact on stigma relatedto epilepsy. This element will be addressed by wayof a planned survey.8 International Epilepsy News 2010

The IBE Promising Strategies Program was set up in 2006 in order to supportIBE Members by providing financial help for projects aimed at improving thequality of life of people with epilepsy. We are delighted to introduce the 11 newprojects recently selected to receive funds under the 4th round of the program.The program is now supporting 38 projects around the world.www.ibe-epilepsy.org/promising-strategyLearning by the BookEpilepsy South Africa is developing a self-advocacy, human rights and rights-to-heath training manual to be used by its National Social Development Managerin self-advocacy training workshops for members of the community and staffmembers from the association’s branches. A secondary objective is to train 30trainers, from seven Epilepsy South Africa branches during 2010-2011. Thesetrainers will then have the potential to facilitate further training of 600 personswith epilepsy and other disabilities each year.The organisation also plans to conduct a pilot study with the two-fold aim of: Training members of staff in implementing and facilitating the training programmein their respective Epilepsy South Africa branches. Monitoring to establish how successful the training program is and the levelof learning achieved by participants during and after training.SOUTH AFRICAJamming it in ZAMBIAEpilepsy Association of Zambia plans to add value to thetomato-growing enterprise already in place in the association’sgarden by embarking on a jam-making enterprise. Notlimiting production to tomato jam, there are also plans toextend the range by buying fruits such as mangos, pawpaws,oranges, strawberries and bananas at the local market whichwill also be used to produce jam.The finished product will be sold in a new association shopthat will be located in the garden. The shop will also stockgarden and poultry products produced by people with epilepsyworking in the garden and more produce will be soldat wholesale prices to local shops.The enterprise will train people with epilepsy in jam-makingtechniques and the profits with be used to pay the workersand to fund the Epilepsy Association of Zambia.The ANLICHE hairdressing workshop will train 15people with epilepsy in hairdressing techniques forladies, gents and children. The workshop participantswill also undertake a course on running a small business,so that they can set up their own micro enterprisesonce they are trained.The workshop is aimed primarily at housewiveswhose epilepsy is now well controlled. These womenwould have had little chance to study or work whenthey were still having seizures and will have neithersocial benefits nor healthcare assistance within thenormal parameters of a national health system.It is expected that up to 80% of participants will findwork within a period of 8 months.CHILEThe Cutting EdgeInternational Epilepsy News 20109

The Promising Strategies Program has supported projects in: Argentina Bangladesh Brazil Cameroon Chile China Czech Republic Ecuador Ethiopia The Gambia Guatemala Kenya Lebanon Mauritius Mongolia Namibia Philippines Romania Sierra Leone South Africa Tanzania Togo Uganda Zambia Zimbabwewww.ibe-epilepsy.org/promising-strategyArtistic Direction in CHINAIn late 2007, the Sea Horse self-help club of the China Association Against Epilepsyconducted an art and crafts competition in Shanghai for persons with epilepsy. Theartworks created were both elegant and valuable, representing the fighting spirit to overcomedifficulties faced by those living with epilepsy. The artworks were of very high quality andwere showcased on the IBE website.In follow up to the art competition, a 4-week course in handcrafts, which took place in August2009, also proved both popular and successful. Feedback from Sea Horse club members indicatedthat these activities were much appreciated and there was a desire for people with epilepsyto have a central place where they could relax and create artworks.In response to this, the China Association Against Epilepsy has taken the decision to create anArt Studio for people with epilepsy in Shanghai. Based on the train the trainers model, the studiowill provide an artistic environment for people with epilepsy and their care-givers. Here theywill be able not only to learn and share art techniques, but to exchange their experiences relatedto epilepsy.Through future planned exhibitions of artwork created in the studio, the China AssociationAgainst Epilepsy also hopes to be able to raise awareness and understanding of epilepsy in thegeneral public as well as improving the quality of life and self esteem of all those involved in theproject.REPUBLICCZECHChildren’s SurveyUsing existing methodology and verified questionnaires, Epistop plans toundertake a survey involving school children, their teachers and parents toestablish whether the situation has changed for children with epilepsy in theCzech Republic since similar surveys were carried out in 1995 and 2007.Based on the data obtained, the association will inform all those interestedhow it is possible to improve the quality of life of children with epilepsy.These questionnaires could be a reliable tool for the next investigation in theCzech Republic.The next plan will be to use the results of the survey to prepare an informationbrochure or leaflet and to upload the information on websites with a prolink to the website of the Ministry of Education.10 International Epilepsy News 2010

Details on the projects supported under this round, as well as in previousrounds of the Promising Strategies Program, can be found on the website.The next round of the program will begin in late 2010, when IBE memberassociations will be invited to submit letters of intent. Full details on theapplication process are also available on the IBE website.www.ibe-epilepsy.org/promising-strategyRaising Awareness is the main goal of the Romanian projectplanned by EpiRomania. Despite the obvious beauty of the architecture andcountryside of Transylvanian, stigma, prejudice and ignorance aboutepilepsy are still widespread in this region—both in people withepilepsy and the general public.ROMANIAGood news for chocoholics!LEBANONThe initiative of the Association for the Care of People withEpilepsy will come as good news to all those with a sweettooth! The ECAL project is a chocolate making workshopwhich will also teach chocolate moulding and wrapping.The project is open to people with epilepsy and to anyoneelse interested in learning the craft of the chocolate maker.Once the techniques of chocolate making have been mastered,the chocolates produced at the workshop will be soldto generate income for the chocolate makers. Some of theprofits will also be used to support people with epilepsywho come from poor backgrounds.Lights, Camera, Action!With a high level of illiteracy in Bangladesh, the writtenword is not always the best way of educating thepublic. With that in mind, the Epilepsy Association ofBangladesh has decided to use the medium of film toinform people about epilepsy.The documentary film has already generated interestfrom a media partner. It is planned to use famous localactors in the production, in order to increase publicinterest and to attract media interest in the project.With a huge population, most of whom have little orno formal education, the incidence of epilepsy inBangladesh is still unknown.BANGLADESHInternational Epilepsy News 201011

Bienvenido a CartagenaCartagena de Indias is one of the oldest cities in the Americas, founded by the Spanishconquistador Pedro de Heredia in 1533. Its famed colonial Old City with San Felipe fortress isa UNESCO World Heritage Site. There is much to do and see in Cartagena; here’s a smallpreview of the city’s unique charms.Centro AmuralladoWalled CityDipping a toe inthe ocean. Afterthe congress,what better wayto wind downand relax!Bocagrande beachEveryone is drawn to the old quarterof the city, the centro amurallado.This is the heart of Cartagena, theold walled city protected by the fortressintended to help defend the cityfrom pirates and storms. Within thewalls there are colonial buildings,plazas, churches and convents. Alsowithin the walled area, the section ofGetsemani is worth exploring duringthe day.To enjoy this attraction you need tothrow away the map and wanderaimlessly along the narrow streets.Inside the walled city you feel moresecure, but you should also remainvigilant for pickpockets. In this partof the city every block is differentfrom the other. It is so true that thestreets gain different names afterevery crossroads!Plaza San Pedro ClaverAt the end of the Plaza de la Aduana,is the Plaza San Pedro Claver, a smallsquare dominated by a sanctuary, amuseum and the Church of Saint PeterClaver.Within the Church are the remains ofSt Peter Claver, the first canonisedsaint in the Western Hemisphere, whoworked in Cartagena for 40 years,defending and nursing African slavesarriving in the port following weeksliving in inhuman conditions on boardslave ships.Tourists are a common species there,and that of course means the everpresent taxis and salespeople hopingto do business. As the streets beginto get more and more narrow, thishas the potential to be a nuisance.But you do get used to it quitequickly.In Cartagena's historic side, you willfind beauty in every building, withold damaged bricks, flaking paintand a down at heel scruffiness thathas the ability to beguile. This is nota sanitized tourist spot, scrubbedclean and shiny, it is a lived-in, vibrantneighbourhood where life goeson despite the daily influx of touristsand their guides. It has to be one ofthe favourite parts of the city for allwho visit it.Plaza San Pedro ClaverSan Felipe de Barajas CastleThis is a must see attraction. InCartagena’s hot humid climate,be prepared for a tough climb toreach the top. But the view isworth the effort. The huge fortressthat dominates the oldtown took 150 years to build.Visitors can now walk the battlements,stroll down into undergroundpassages and tunnelsand wonder at the work thatwent into building a fort that, inthe end, was never used defensively!12 International Epilepsy News 2010

IBE en Cartagena de IndiasLas futuras actividades del IBE en elVI Congreso Latinoamericano de EpilepsiaTomás Mesa Latorre,Secretario Comité Latinoamericano del IBEDurante el VI Congreso L.A.de Epilepsia a realizarse enCartagena de Indias, quetendrá lugar entre los días 1 y 4 deAgosto 2010, habrá varias actividadesque el IBE desarrollará, destacandoentre ellas, las siguientes:Groupos de discusiónUno de los grupos de discusión, presentarála siguiente temática:Desafíos en calidad de vida en personascon epilepsia donde habrá exposicionesde las experiencias en Brasil,Chile, El Salvador y Uruguay. Habráademás una proposición de cómoevaluar estos aspectos.Jornada del BuróLa Jornada del Buró, la cual estaráabierta a la participación del públicoen general y particularmente a personascon epilepsia y sus familiares.Las jornadas estarán especialmentededicadas a docentes y educadores delas áreas primarias y secundarias,como importantes agentes difusores ala sociedad. Habrá información dealgunos aspectos de especial relevanciarelacionados con la Ley de Epilepsiaen Colombia y cambios realizadosen el sistema de salud, de vitalimportancia para el conocimiento depersonas con epilepsia y sus familiares.Epilepsia y LegislaciónEn el programa científico se trataráEpilepsia y Legislación, destacandolo realizado en Colombia y Argentina,con la visión mundial de la CampañaGlobal.Estrategias PromisoriasEstá prevista la reunión desayunosobre los proyectos de EstrategiasPromisorias, donde se mostraran algunasde las actividades ya realizadosen nuestra región, incluyendo Argentina,Chile y Guatemala, con el objetivode estimular a otros países a concursara nuevos proyectos y desafíos.Asamblea General del ComitéLatinoamericano del IBEComo es habitual, se llevará a efectola Asamblea General del Comité Latinoamericano,recordando lo sesionadoen el Congreso Mundial de Epilepsiaen Budapest y los planes futurosde cada Capítulo Latinoamericano.Reunión IBE/ILAEPor tercera vez, se llevará a efecto lareunión de las directivas del ComitéLatinoamericano del IBE y de la ComisiónLatinoamericano de la ILAE,con el objetivo de seguir trabajandoen proyectos Latinoamericanos enconjunto.Campaña GlobalUna de las actividades más importantesserá la centrada en el lanzamientode la tercera etapa de la CampañaGlobal contra la Epilepsia, con unasesión y además la formación de uncomité para planificación y desarrolloen este nuevo periodo.AfichesHabrá nuevamente, la tradicionalexposición de Afiches (Posters), relativosa la conformación y actividadesque desarrolla cada Capítulo del IBE.En esta oportunidad es enfocado a losCapítulos Latinoamericanos del IBE.Esta idea es promocionada por elComité Ejecutivo Internacional delIBE y estos mismos afiches, seránexpuestos en el Congreso Mundial deEpilepsia en Roma, el 2012.Otras ActividadesSerán tratados durante el congreso,varios trabajos relativos a los socialo educacional, ya sea en Afiches oConferencias que fueron enviadospor autores de diferentes países denuestra región. Como es habitual,habrá una Estación (o Stand) del IBE,para poder conversar, presentar ymostrar material, afiches, revistas,material educativo, etc, que cada paísrealiza en sus actividades diarias.International Epilepsy News 201013

First issued April 2010PRESIDENT’S LETTEREuropean Epilepsy DayDear IBE members and supportersBackgroundI am delighted to report that one of the moreimportant decisions taken at the recent meetingof the IBE and ILAE Executive Committeeswas to move forward with the creation of aEuropean Epilepsy Day.This follows from background research undertakenby the Political Action Group of EUCARE,including a survey of IBE and ILAE memberassociations in Europe to gauge interest insuch an initiative. The results of the surveyshowed that both IBE and ILAE associationswere very enthusiastic about the plan andwere also in favour of holding the event inFebruary each year.Given the magnitude of the planned EuropeanEpilepsy Day and the impact it could achieve,the Political Action Group approached the IBEEuropean Regional Committee which has sinceindicated its agreement and enthusiasm inbeing involved. The ILAE Commission onEuropean Affairs has also been invited to takepart in the event. This will not be a fundraisingevent, since several IBE and ILAE membersalready use annual or biennial nationalevents as a means of generating funding (aswell as awareness) for their associations.Launching European Epilepsy DayEuropean Epilepsy Day will be launched on14th February 2011 (the Feast Day of St Valentine,who is reputed to have had epilepsy)and the Political Action Group, in liaison withthe IBE and ILAE European structures, willdevelop a launch activity with the potential togenerate a good level of response from bothMembers of the European Parliament andjournalists.The aim of European Epilepsy Day will be topromote epilepsy awareness at regional levelthrough educational and promotional activities.Over the coming months EUCARE, togetherwith the IBE Regional Committee and theInternational League Against Epilepsy, will besetting plans in place for next year’s launch.As details are confirmed we will be able to14 International Epilepsy provide News you 2010 with more information on how theday will be celebrated and how our membersin Europe can become involved in the event.Planned objectiveThe European Epilepsy Day is an importantdevelopment and will serve to send out theright signals to the European Union, wheremore and more emphasis is being placed onthe need for medical and lay associations towork together on initiatives requesting thesupport of the European Parliament.European Epilepsy Day will add to the otherregional epilepsy days already organised byIBE members and regional committees. Forseveral years the IBE Latin American RegionalCommittee has celebrated an annual LatinAmerican Epilepsy Day on the 9th September,while an epilepsy day introduced in China,after discussion with IBE, is supported by severalother members in the Asian region. Intime it is planned to have annual epilepsydays in each of IBE’s seven regions.International Epilepsy DaySuch events would respond to the oftenvoiced request of IBE members that an InternationalEpilepsy Day be created. Althoughsuch a day has been discussed by the IBE andILAE Executive Committees, further considerationwas postponed until the WHO wouldprovide it's support.The support of the World Health Organisationis seen as vital for the International EpilepsyDay and the success of the European EpilepsyDay and other regional epilepsy days may becrucial in achieving this.All the best,MikeMike GlynnPresident

Outstanding Persons with Epilepsy AwardTime is running out!If your association is located in theSouth East Asia or Western Pacificregions, this is an urgent reminder tosubmit your nomination for the 2010Outstanding Persons with EpilepsyAwards, which will be presented inMelbourne during the 8th Asian &Oceanian Epilepsy Congress (AOEC)in October.These special awards were first introducedat the 4th AOEC in Nagano,Japan 2002. The idea behind theaward is to encourage people livingwith epilepsy to talk openly abouttheir condition, thereby overcomingthe heavily culturally defined stigmaand discrimination that exists withinthe region. Since 2002, the award hasbeen presented to worthy recipientsat congresses in Bangkok 2004,Kuala Lumpur 2006, and Xiamen2008.The Regional Executive Committeesin the South East Asia and WesternPacific regions would like to encourageIBE Members in these regions,who have not already done so, toselect a candidate from within theirassociation to receive the award inMelbourne. Each member in theseregions is entitled to nominate onerecipient.Suitable candidates may have made asignificant contribution to communityservice; have given longstandingsupport for people with epilepsy; hada significant individual achievement;be a staunch advocate for epilepsy; orhave given distinguished service to alocal epilepsy association.Once a candidate is selected, a nominationform should be completed andsent by email to the IBE officeibedublin@eircom.net.The South East Asian and WesternPacific Regional Committees haveallocated some financial supportwithin their budgets to assist thosenominated for the award to attend thecongress in Melbourne for the awardceremony. A closing date for nominationsis 15th July.The nomination form is available onrequest from ibedublin@eircom.net.But hurry! There is no time to waste!Epilepsy Report tabled in Australian ParliamentJill Hall MP, Mark Coulton MP, Wally Lewis, GraemeShears, Chair Joint Epilepsy Council of Australia,Damian Hale MP, and Bill Shorten MP and ParliamentarySecretary for Disabilities and Children’s Services.In early March, Parliamentary Friends of Epilepsy, Jill HallMP and Senator Gary Humphries, tabled the Friend’s Reporton the Informal Inquiry into Epilepsy in the AustralianHouse of Representatives and the Senate.“These recommendations range from the need for comprehensiveeducation and awareness to educating governmentdepartments, the need for positive employment initiativesand looking at issues surrounding travel. One that I supportquite strongly is a national health survey to provide accurateinformation on the data concerning the incidence and treatmentof epilepsy,” stated Jill Hall.Senator Gary Humphries highlighted those recommendationsthat proposed more research; better education of practitioners,doctors and nurses; and, of course, measures toreduce the stigmatisation that people with epilepsy tend tosuffer by virtue of the nature of seizures that they mightexperience.Graeme Shears, Chair of the Joint Epilepsy Council of Australia(JECA), IBE’s Member in Australia, said membersconcurred with the recommendations contained in the report,particularly regarding employment access, and funding forprojects such as research and awareness-raising.International Epilepsy News 201015

Addressing the Task at HandWork gets underway for the Global CampaignAgainst Epilepsy TaskforceAt the Taskforce meeting inDecember 2009Back (from left): AnthonyZimba (Zambia), CharlesBegley (USA), Emilio Perucca(ILAE Treasurer), Raida AlBaradie (Saudi Arabia), NicoMoshé (ILAE President), SamWiebe (ILAE Treasurer), CarlosAcevedo (Chile)Front (from left): Mike Glynn(IBE President), Tarun Dua(WHO), Helen Cross, (Co Chair,UK), Hanneke de Boer(Campaign Coordinator),Shichuo Li (Co Chair, China)One of the first tasks of the GlobalCampaign Taskforce was to developa strategic plan to be submitted to theExecutive Committees of ILAE andIBE for discussion during the JointExecutive Committee Meeting inMarch 2010. It was agreed that theplan should include: a vision to raise visibility of thecampaign, its activities andproducts; development of one externalharmonised message; strategies to work with governmentsto enhance epilepsy-relatedpolicies and programmes; recruitment of junior people fromthe regions to assist with the workof the Taskforce/Campaign; strategies to further address thetreatment gap and knowledge gapworldwide; an outline of priorities for research.Research considered should ultimatelylead to better quality oflife for people with epilepsy andtheir carers. Population basedresearch is an important componentof GCAE work; issues to be addressed in both developedand developing countries.Goals and recommendationsDuring the meeting of the Taskforce,held in Boston in December 2009,the following needs were discussed:1. Need for internal collaborationand cooperation. It is essentialthat the Task Force involve theILAE/IBE Regional Committeesfrom the time of its conception;2. Information sharing, disseminationand promotion mechanisms:both internally and externally.Increasing awareness of existingDemonstration Projects.;3. Developing new DemonstrationProjects. Consider as a goal theinitiation of new projects in eachregion over the next 4 years;4. Improving the visibility of epilepsyand the Global Campaign in allcountries (both developed anddeveloping);5. Identification and capitalisation ofCampaign entry points with otherinternational organisations andinitiatives;6. Collaboration with regional andtopic-specific ILAE and IBECommissions and Committees;7. Encouragement of participation ofindividual chapters/members;8. Partnerships with other internationalorganisations and identificationof such organisations;9. To act as liaison for informationgathering and feedback on theburden of epilepsy project;10. Assessment of the role andmethodology for country needresource assessment and resourcemobilisation.The discussion led to the identificationof five possible goals and recommendationsas a start to the formulationof a strategic plan:Goal 1.Improve the visibility of epilepsy andthe activities of the Global Campaignin all countries.Goal 2Promote activities of epilepsy projectsat country and regional level.Goal 3Assess and strengthen health caresystems analysis for epilepsy by acquiringa better understanding of theconceptual model, magnitude andscope of the coverage gap includingthe treatment and knowledge gap(definition), measuring the burden ofepilepsy and methods for conductingcountry resource assessments.Goal 4Increase partnerships and collaborationwith other organisations.Goal 5Develop the necessary infrastructureand resources to achieve the expandedgoals of the Campaign.Some members of the Taskforce willmeet in Rhodes during the ILAEEuropean Congress on Epileptologyto discuss the action plan that hasbeen drafted and which will ensurethat this strategic plan becomes areality.16 International Epilepsy News 2010

TinkersNovel involving epilepsy wins the Pulitzer Prize forfictionPaul HardingPublisher: Bellevue Literary PressISBN-10: 193413712XISBN-13: 978-1934137123Author Paul Harding has won thePulitzer Prize for fiction with hisdebut novel ‘Tinkers’ which hasbeen described by critics as "apowerful celebration of life".George Washington Crosby, themain character of the book, is agrandfather who, lying on hisdeathbed and surrounded by hisfamily, looks back on his life.Central to his reminiscing arememories of his father Howard,who had epilepsy. Harding’s descriptionof the father’s seizures,and the chemical electricity thatsurrounded him before each suddenviolent seizure, is beautifullywritten. Indeed, throughout thebook, the language used byHarding is the real star of thenarrative. Published in January2009, the novel has receivedrave reviews.Bellevue Literary Press is a smallUS publisher connected to theSchool of Medicine of NYU.Harding, formerly the drummerfor rock band Cold Water Flat,now teaches at Harvard.Light-sensitive genes to tackle EPILEPSYInserting light-sensitive molecularpumps into brain cells could helpscientists better understand and eventuallyeven control epilepsy, delegatesat a recent conference at theRoyal College of Surgeons in Ireland(RCSI) were told.Professor Merab Kokaia from LundUniversity Hospital in Sweden toldIreland’s first national research conferenceon epilepsy about his work,which puts light-sensitive chloridepump genes from bacteria into mammalianbrain cells growing in the labto look at their effects on epilepsyrelatedactivity. When triggered bylight, the bacterial system dampensdown seizure-associated electricalsignals between brain cells.This “optogenetic” approach, thatuses light-activated genes, provides apowerful tool to research brain function,according to Kokaia.“Our data show that specific cellpopulations can be addressed byoptogenetics in epilepsy models, andthat such selective approach may beeffective in suppressing seizure activity,”he said. However, he noted theapproach would not be applied topatients in the short term: “There is along way between showing the principlein laboratory conditions andhuman application.”Prof Kokaia’s work is a first steptowards possible light-based neuralprosthetics that could help controlseizures by stimulating appropriateelectric patterns in the brain, said DrDavid Henshall who, together withDr Gianpiero Cavalleri from theRCSI, organised the conference.This little Piggie stays at home!Researchers in Kenya have been trying a seemingly unlikely,but simple, tactic to prevent epilepsy: encouraging farmersto keep their pigs tethered rather than running free.The aim is to stop the pigs from spreading Taenia solium, thetapeworm that causes neurocysticercosis in humans, a majorcause of epilepsy in poor countries, particularly in Africa, Asiaand Latin America, where millions are infected. Humans pickup the tapeworm from infected animals by eating undercookedpork meat.Farmers in western Kenya are being taught how the diseasespreads and shown how to identify infected meat, cook it todestroy worms, recognize tapeworms and tether or confinepigs to keep them away from human waste.International Epilepsy News 201017

Excellence in Journalism Award 2010Second round of competition announcedFollowing the very successful firstExcellence in Journalism Award, weare pleased to announce that a secondround of the initiative is now underway.The aim of the award, which isa collaboration of IBE and UCBPharma, is to encourage journalists toraise awareness about epilepsy and tohelp break down the barriers faced bypeople with epilepsy through educationon the true facts about epilepsy.The international award recognisesjournalists who produce stimulating,informed and compelling news andfeature stories on epilepsy, and isopen to consumer, health and medicaljournalists from around the worldwriting for print, broadcast or onlinemedia and will celebrate journalismthat challenges stereotypes. Freelancejournalists are also eligible to enter.Reports and articles submitted forconsideration must have been publishedor broadcast between 30thJune 2009 and 29th October 2010and articles must fulfil some or all ofthe following criteria: Help to increase awareness andunderstanding of epilepsy; Give a voice to persons withepilepsy; Is conceptually or visually innovativeand creative; Uses language responsibly whenreporting or writing on epilepsy; Is well structured, well researchedand makes for compelling readingor listening.Prizes will be presented in threecategories: Print Broadcast OnlineEntries accompanied by a completedentry form will be accepted until 29thOctober 2010.Further information on the award canbe found on the IBE websitewww.ibe-epilepsy.org/activities/excellence-in-journalism-award.MichaelPrize2011The Michael Prize was awarded in Germany for the first timein 1963, for the best contribution to scientific and clinicalresearch which promoted further development in epileptology.The prize is now highly regarded as an international award forresearch that promotes further development in epileptology.The Michael Prize is awarded biennially and is specially designedto attract younger scientists (normally less than 45 years of age).The prize fund is €20,000.For the Michael Prize 2011, up to a maximum of three papers in theEnglish language may be considered, at least one of which – publishedor not yet published – must be from the period 2009/2010.The papers, together with a curriculum vitae, should be submittedby electronic mail before 31st December 2010.For information and/or submission of applications contact:Stiftung Michael, Muenzkamp 5, D -22339 Hamburg, Germanye-mail: StiftungMichael@t-online.de18 International Epilepsy News 2010

Golden Jubilee Photography CompetitionA photography competition, opento everyone, is the first of manyinitiatives being planned by theBureau to celebrate IBE’s GoldenJubilee in 2011. The competition,which is titled Epilepsy WithoutWords is now open for entries andthe closing date is not until 1stMarch 2011.A special photo gallery, whichwill display all of the entries thatare received, will be open on theIBE website from 1st June 2011and the competition winners willbe announced during the 29thInternational Epilepsy Congressin Rome in late August 2011.Full information on the photocompetition, including a list ofrules, is available for downloadfrom the IBE website:www.ibe-epilepsy.org.CategoriesIn addition to a category for regulardigital camera photos, there isalso a special category for photostaken using a mobile or cellphone. As most people now carrya phone with an inbuilt camera,there is no excuse for not takingpart in this competition. And, whoknows, you could be the winnerof one of the major prizes!Who can enter?The competition is open to everyone– professional and amateurphotographers alike. We are alsolooking for your help in attractingentries.If you are part of a camera club orknow someone who is, we wouldask you to encourage promotionof the competition to club members.Entries from students at artand design colleges are also welcomeand the competition couldbe used by first and second levelschools to raise awareness aboutepilepsy in schoolchildren. IBEwould also welcome contact detailsfor interested clubs andschools in your area, so that wecan contact them directly.Finally, if you are under 16 yearsold, you will need the permissionof a parent/guardian to take part.PRIZESDigital Camera Category: 1st Prize: US$3,000 2nd Prize: US$2,0003rd Prize: US$1,000Mobile Phone Category: 1st Prize: US$500 2nd Prize: US$3003rd Prize: US$200International Epilepsy News 201019

Future Congresses 20106th Latin American EpilepsyCongressCartagena, Colombia1st - 4th August 201012th European Conferenceon Epilepsy & SocietyPorto, Portugal25th - 27th August 20108th Asian & OceanianEpilepsy CongressMelbourne, Australia21st - 24th October 201020 International Epilepsy News 2010IBE/ILAE Congress Secretariat7 Priory Hall, Stillorgan, Blackrock, Co Dublin, IrelandEmail: info@epilepsycongress.orgPhone: ++353 1 20 567 20Website Portal: www.epilepsycongress.org