Congress Awardsawards Aedsaeds Inin Developingdeveloping Countriescountries Promisingpromising Strategiesstrategies ‘09‘09

l Internationa Epilepsy News Newsletter of the International Bureau for Epilepsy Issue 1 - 2009

CongressCongress AwardsAwards AEDsAEDs inin DevelopingDeveloping CountriesCountries PromisingPromising StrategiesStrategies ‘09‘09

International Epilepsy News 2009 1

The President’s Message

Dear Friends International As always, the time has rushed by since the last IE News and I am sure all of you are busy Epilepsy News introducing new activities for 2009. No. 1 - 2009 For IBE this is also a busy time, as we draw Editor Carlos Acevedo close to the end of the current term of the In- Co-ordinator Ann Little ternational Executive Committee and prepare for the handover to the new committee, which Regional Sub-editors will take place during the General Assembly Africa: Noeline de Goede in Budapest. So this is the second last time Latin America: Tomás Mesa that I will write to you in the IE News in my North America: Lisa Boylan role as President! South East Asia: Marshal Hsi Western Pacific: Sherman Goh Apart from the ‘changing of the guard’ during the General Assembly, there is also a lot of other activities planned for Budapest. In this issue you will see Advisors the names of those dedicated people who have been selected to receive the Abdulaziz Al-Semari: Saudi Arabia Lifetime Achievement, Social Accomplishment and Ambassador for Epi- Athanasios Covanis: Greece lepsy Awards. In addition, IBE will present the Volunteer Award during the Zenebe Gedlie Damtie: Ethiopia General Assembly. The recipient has already been chosen but the name will Mike Glynn: Ireland remain a secret until 1st July. However, once you learn of the tremendous Eric Hargis: USA dedication that award winner has given to improve the lives of people with Anchor Hung: Hong Kong epilepsy, you will agree that the award is well merited. Shung-Lon Lai: Taiwan Philip Lee: UK The annual spring meetings of IBE, ILAE and the joint meeting of both com- Susanne Lund: Sweden mittees (JEC), took place in Brussels in mid-March. At the meeting of the Mary Secco: Canada IBE International Executive Committee, the important decision was taken to Peter Wolf: Denmark approve the proposal to invite the General Assembly to amend the Constitu- Solomon Moshé: USA tion to allow for a new Regional Member status. Information on this proposal Martin Brodie: UK will be circulated by 1st May and I hope that all Full Members will ballot on Editorial Correspondence the proposal. Ann Little Finally, I would like to encourage all Full Members to find time to vote in International Bureau for Epilepsy the regional elections. These elections are still ongoing, but the closing date 11 Priory Hall, Stillorgan, for submitting votes is not too far away. By early June we will have com- Dublin 18, Ireland pleted all of the elections and will be able to announce the names of those to Email: [email protected] sit on the Regional Executive Committees for the term 2009-2013. Subscription Until next - best wishes to all! Three years: US$30 Five years: US$48 Susanne Lund President Contact [email protected] for further details. Copyright PARTNERING SPONSORS International Bureau for Epilepsy or as stated. Views expressed and informa- IBE acknowledges the support of its PLATINUM PARTNER: tion included herein do not necessarily generous partnering sponsors. To UCB Pharma reflect official policies or endorse- learn about partnering opportunities ments of the International Bureau for with IBE, please contact: GOLD PARTNERS: Epilepsy or its members. Dainippon Sumitomo Pharma Co., Ltd. Ann Little, Executive Director Articles covering medical aspects of Eisai Co., Ltd. Email: [email protected]. epilepsy are not intended to be taken as advice. All content is copyright and may not be reproduced without prior The International Bureau for Epilepsy, with membership of permission. 126 epilepsy associations based in 92 countries worldwide, The Editor reserves the right to edit works to improve the quality of life for all people affected content for reasons of space or clarity. by epilepsy.

2 International Epilepsy News 2009

The Editor’s Letter

Dear Friends, Contents We have now moved to 2009 and in the first issue of the year 4 Proposal for Constitutional Change we are including exciting information on the names of those 5 Congress Awards 2009 selected to receive the IBE/ ILAE congress awards, at the 8 AEDs in Developing Countries end of June, during the Opening 10 Promising Strategies 2009 Ceremony of the 28th Interna- tional Epilepsy Congress, in 13 Robert Bentley Todd Remembered Budapest. It is always important 14 Creative Sparks and necessary to recognize the vital contributions of volunteers, 16 Portrait of the Artist all over the world, who devote their time and expertise in order 17 EPICURE Annual Meeting to help people with epilepsy. Maybe it is a little unfair to give an award only to few of these worthy people, but they repre- 18 Jamaican Model for Teamwork sent, somehow, all of you. One award that will remain secret until the IBE General Assembly is the winner of the Volunteer 19 Announcing Melbourne 2010 Award and I hope that many of you will be able to attend the assembly to hear this announcement. Besides that, we have a report from Brazil on the issue of AEDs and generic substitution; a celebration of the artistic achievements of persons with epilepsy around the world; and an interesting article submitted by Dr Amza Ali from Jamaica on suggestions to coordinate the creation of an ILAE chapter and an IBE member at the same time, in order to develop a team work plan. I think there are interesting ideas in this article that could be picked up and developed by other IBE members. Of course we must mention the report about the latest round of the Promising Strategies Program which presents the latest 4 projects to be selected for funding. Last, but not least, there is the important message from our 14 President Susanne Lund.

Best regards Dr Carlos Acevedo Editor

International Epilepsy News on the Web IE News is now available on the IBE website www.ibe-epilepsy.org Previous issues can be found under the tab IE News, while the current issue is available to IBE Members on the Members section. 18 10

International Epilepsy News 2009 3 Strategy Fulfils its Promise!

Harmiena Riphagen, from Epilepsy Namibia, sent us this happy photograph showing participants of the Onyose Project receiving their course certificates. The Onyose Project, which received IBE funding through the second round of the Promising Strategies Program, was created following an enquiry from the mother of a child with epilepsy and was consequently planned with the support of the Care Centre the young boy attends. A four-day workshop was produced, with the objective of training the teachers, care givers and people with epilepsy at the Trust, to enable them to manage the condition effectively. Epilepsy Namibia created the education package, which includes information and care plans, in such a way that it has now become a reference work for the future. The pack will be made available to groups throughout Namibia that need similar training and lack access to information and communication. Projects to receive support under the third round of Promising Strategies funding has just been announced and you can find out more on page 10 of this issue. In the meantime we send our congratulations to all those involved in the Onyose Project. Regional Membership: Proposed amendment to the IBE Constitution

lectively with other similar countries regional organisation covering more it might be possible to sustain one than one country would be counted as that covers more than one country – a just one country for the purpose of “regional epilepsy organisation”. For calculating the 20% threshold re- example, a Caribbean Epilepsy Asso- quired to form a regional committee. ciation that covers Caribbean coun- Process tries that do not otherwise have a The International Executive Commit- national epilepsy association. tee has considered and approved Making this possible changes to the Constitution to allow To make this possible it is necessary for regional organisations to become According to the IBE to amend the Constitution so that Full members. These changes are Constitution, one of the criteria of epilepsy organisations that cover being presented to the Full members Full membership is that an epilepsy more than one country can be eligible of IBE for their consideration and organisation must have “national for membership of IBE. In allowing decision. Article XIX requires any status”. However some countries in for this, it seems sensible to pre-empt modification to the Constitution to be the world have a population number potential problems by adding a con- proposed either by the International that is so small, or a level of develop- dition that regional organisations Executive Committee or by at least ment that is so low, that it is not pos- cannot include a country where there 20% of the Full members of IBE. sible to sustain any type of epilepsy is an existing Full Member of IBE. Approval of any changes requires a organisation, let alone a national epi- Also, should a national organisation minimum two thirds majority of a lepsy association. Under the current emerge in a country covered by a minimum 50% plus one Full mem- Constitution, these countries and the regional organisation then that na- bers voting in a ballot. people with epilepsy within them tional organisation can be considered It is hoped that all Full members will might never be able to access the for membership in its own right and take an active part in bringing about benefits of membership of IBE. if successful the regional organisa- this Constitutional amendment. Bal- A solution tion’s geographical remit as recog- loting will take place during the Gen- Although an individual country nised by IBE is adjusted accordingly. eral Assembly on 1st July and absent might not be able to sustain its own Finally, to prevent a possible distor- Full members will be encouraged to epilepsy organisation, by acting col- tion of an IBE regional committee, a submit their votes by email.

4 International Epilepsy News 2009 AWARDS 2009

Lifetime Achievement Award

The Lifetime Achievement Award in Hall of Fame maintained by IBE and development and permanent im- Epilepsy is given jointly by the Inter- ILAE. In the event that the Award provement of epilepsy care and/or the national Bureau for Epilepsy (IBE) winner is not already an Ambassador well-being of people with epilepsy in and the International League against for Epilepsy, this additional Award an international context. Following Epilepsy (ILAE). The Award is given will also be given. deliberation and discussion by the to an individual to recognise and hon- This Award is the highest honour in Joint Executive Committees of IBE our his or her exceptional and out- the gift of IBE and ILAE. As such and ILAE on the candidates sug- standing personal contribution over a gested by member associations and candidates will be assessed accord- long period of time to activities that ingly and will need to demonstrate a nominated by a member (or mem- advance the cause of epilepsy. quite exceptional record. As the title bers) of the IBE and ILAE executive The Award reflects international peer of the Award suggests, candidates committees, the following recipients recognition. It consists of two com- must be able to demonstrate a long were selected by blind ballot to re- memorative and inscribed silver can- standing personal contribution (either ceive the award in Budapest. dlesticks, a financial prize of voluntarily or professionally) in any Further information on the award US$5,000, a scroll, and the name of scientific, clinical, educational or process is available on the IBE web- each recipient is added to the Life- psycho-social field of epilepsy that site or can be obtained from the IBE time Achievement Award winners’ contributes towards the significant office on request.

• Graduate, Paris Faculty of Medi- Main Honours and Distinctions cine 1955 and Research Fellow, • Cornelia de Lange Medallion Harvard Medical School 1955-1956 • Fellow Royal College of Physicians • Assistant Physician Hôpital des • Honorary Fellow Royal College of Enfants Malades 1957-1964 and Paediatrics and Child Health Hôpital Saint Vincent de Paul, Paris • Hower Award, USA 1964-1979. • AES Milken Award • Maître de Recherche, INSERM • Ambassador for Epilepsy 1969-1986; Director of Research • Ramon y Cajal Award INSERM and Head Pediatric Neu- • Peter Emil Becker Award, Germany rology Unit, University Hospital • Honorary Member, European Necker-Enfants Malades, Paris Paediatric Society, Sweden 2005 1986-1991 • Aicardi’s syndrome was described • Visiting Scientist Miami Children’s in 1969 (Arch Fr Pediatr) and Hospital, USA, 1993 and Hon Prof Aicardi-Goutières syndrome in of Child Neurology, Institute of 1984 (Annals of Neurology). Child Health, London 1992-1998 Jean Aicardi, • Editor-in-Chief, Epileptic Disor- • Author 259 articles in international ders 1999-2004. France peer journals, 111 chapters, 5 books

Ms de Boer has worked in the field of has presented and published numer- epilepsy since 1966. She became ous papers on the social aspects of editor of IE News in 1985, was IBE epilepsy, in particular employment Secretary General 1989-1993 and and employability of people with President 1997-2001. She has been a epilepsy, the influence of stigma on member or chair of a number of IBE the lives of the people and the burden Commissions. In 1999 she joined the of epilepsy. ILAE/IBE/WHO Global Campaign Ms De Boer has received a number of Against Epilepsy secretariat and was awards, including the Award of the co-chair from 2001 to 2005. She is Dutch Christian Society for the Care still involved in the campaign today. of People with Epilepsy, the IBE/ Ms de Boer works at an epilepsy cen- ILAE Ambassador for Epilepsy tre, Stichting Epilepsie Instellingen Award, the Spike and Wave Award Nederland, where for the last 10 of the Dutch Branch of ILAE, the years she has been involved in devel- IBE/ILAE Award for Social Accom- Hanneke de Boer, oping international contacts for the plishment, and the Dutch Royal deco- centre, which was designated a WHO ration: Officer in the Order of Oranje Netherlands Collaborating Centre in 2004. She Nassau.

International Epilepsy News 2009 5

Social Accomplishment Award The Social Accomplishment Award in the social well being and or quality Nominations submitted for the Social in Epilepsy is given jointly by the of life of people with epilepsy. Accomplishment Award 2009 were International Bureau for Epilepsy The Award reflects international peer discussed at the joint meeting of the (IBE) and the International League recognition. It consists of an en- IBE and ILAE executive Committees against Epilepsy (ILAE) every two graved glass trophy, a financial prize in March. Following discussion a years. It is given to an individual to of US$5,000, a certificate and the secret ballot was held and Michael recognise his or her outstanding per- name of each recipient is added to the Hills received the highest number of sonal contribution to activities that Award winners’ Hall of Fame main- votes and was duly selected to re- have resulted in a significant advance tained by IBE and ILAE. ceive the award in Budapest

Dr Michael Hills ONZM, BA, MA, work for people with epilepsy and in PhD, DipTch, AFNZPsS, MRNZS is the community in 2002. He has over an Hon Fellow of the Dept of Psy- 100 publications and conference pa- chology, University of Waikato, New pers to his name. As IBE Vice- Zealand. He graduated PhD in 1973 President he chaired a constitution from Australian National University, review committee and the election Canberra, after a study of intergenera- task force. As Secretary-General he tional values disparity in migrant saw IBE membership expand to over families. His interest in the disability 60 countries. He has been a speaker at field originated in his own experience 20 international epilepsy conferences. of epilepsy throughout adulthood. He Recent research has focused on devel- has been an IBE Vice President, Past oping and evaluating systems for the President of Epilepsy New Zealand, provision of community care for peo- and on the Council of the New Zea- ple with epilepsy, especially minority Michael Hills land Neurological Foundation. He indigenous groups. His research goal received an Ambassador for Epilepsy is to improve the quality of life for New Zealand award in 1999 and ONZM for his people with epilepsy and their families.

Ambassadors for Epilepsy The Ambassador for Epilepsy Award The Award carries no monetary value be presented with an Ambassador’s is given jointly by the International but it does reflect international peer pin during the Opening Ceremony of Bureau for Epilepsy (IBE) and the recognition and it is given for the the 28th International Epilepsy Con- International League against Epilepsy lifetime of the recipient. gress, Budapest 2009. (ILAE) and not more than 12 Awards Close to 50 nominations were sub- This brings to 277 the total number will be given at any one time. mitted by IBE Full Members and of Ambassadors for Epilepsy created The Award recognises outstanding ILAE Chapters for consideration for since the award was first introduced personal contributions to activities the awards 2009. The following were at the suggestion of IBE in 1968. that advance the cause of epilepsy. selected to receive the award and will

Ettore Beghi Anne Berg Warren Blume Italy USA Canada • President, LICE, Italy • Research Professor • Prof Emeritus University of • Former Member IBE Com- (Biology), NIU DeKalb IL Western Ontario mission on Risk & Insurance • Chair, ILAE Commission on • Co-founder Canadian • Chairman First Seizure Trial Classification & Terminology League Against Epilepsy Group in Italy • Member IBE Risks & Insur- • Served as Chair/Member on • Member ILAE Commissions ance Commission 1997-2005 several ILAE Commissions on Antiepileptic Drugs and • Involved in NINDS-AES • Past President American on Burden of Epilepsy initiative on SUDEP Clinical Neurophysiology Soc

6 International Epilepsy News 2009 Carol D’Souza Normal Delanty Jacqueline French India Ireland USA • Invited speaker to several • Involved in Diaspora meet- • Co-Chair, ILAE Commission international congresses ings of Irish Institute of on Therapeutic Strategies • Manages IEA Bombay Chapter Clinical Neurosciences • Sub-commission Secretary • Member British Medical • Regular congress speaker VIREPA Journal patients advisory • Leads Irish section in major • Co-organiser Anglophone committee Genetics & Epilepsy research Africa Initiative • Spoke on behalf of persons • Helped combine Irish and • Member, ILAE Epilepsy with epilepsy at the WHO UK pregnancy registrars Initiative in Ghana

Shunglon Lai Shichuo Li Lilia Nunez Orozco Taiwan China Mexico • Assisted the Quality of Life • Involved in WHO/NIH • Member organising/scientific Program in Mongolia epidemiology study of committees Latin American • Facilitated development of epilepsy in China in 1980’s congresses self-help groups for lay peo- • Created first lay epilepsy • Chair IBE Regional Executive ple in China organisation in China, 2005 Committee Latin America • Created Taiwan Cycling for • Developed IBE and ILAE • Founder IBE Full Member in Epilepsy awareness program associations in China Mexico • IBE Vice President Western • Chaired 7th AOEC, Xiamen • Chair 3rd LACE, Mexico Pacific

Cidgem Ozkara Ernest Somerville William Theodore Turkey Australia USA • Encouraged development of • Instigator/director East Timor • World leader in neuroimaging lay organisation in Turkey Epilepsy Training Program to investigate pathophsyiology • Past President ILAE Turkey • Advocate for cooperation in • Served on editorial board of chapter epilepsy education in Asia Epilepsia and other journals • Founding member EUREPA Oceania • ILAE representative to PAHO • Initiated EPODES surgery • Served on several interna- and involved in several education project tional congress committees PAHO projects • Secretary ILAE Commission • Past President Epilepsy • Helped foster interaction on European Affairs Society of Australia between WHO and NINDS

International Epilepsy News 2009 7 Use of Different AED Formulations in Developing Countries

Survey of Associação Brasileira de Epilepsia, Brazil, by Laura Maria de Figueiredo Ferreira Guilhoto

Brazil, the largest country in Latin shown a great discrepancy with other Despite of the fact that the OGGPP America, with a surface of 8.5 mil- low- and middle-income countries, was published in Brazil in 1999, lion km2, has a GNI per capita of with estimate coverage of retroviral there are also available similar AED US$5,910 and a population of 190 treatment of 80%, compared to 31% formulations that constitute copies of million inhabitants, of which 22% in these nations. 4 the brand drugs. Although most simi- 1 are below national poverty line. Although the Brazilian government lar AEDs have passed through bio- There is great disparity in income generics public policy (OGGPP) has equivalence tests in recent years, distribution in Brazil. In 2007 the been developed since the late 1990s they are not included in the OGGPP, richest 10% of the population ac- and has been a very successful pro- but they can be obtained by the gov- counted for 43.2% of the nation’s gram, data from the Brazilian Statis- ernment if their price is lower. income, compared to 44.6% in 2004. tical Office (IBGE, 2002-2003) The economic impact of generic Social achievements have been seen shows that for 40% of the poorest drugs is well known and their use is during the last decades, such as a people, the heaviest item in the recommended in most nations. It is decline in infant mortality from health familial budget was medica- widely accepted that generics have around 50 per 1,000 live births in tion costs—accounting for 68.5% of promoted a great impact in the treat- 1990 to 21.1 per 1,000 in 2005. Al- family health expenditure.3 The esti- ment of several diseases world wide, though school enrolment in basic mated prevalence of epilepsy in Bra- especially in developing nations. education rose from 85% in 1990 to zil is around 2%5. Nevertheless in epilepsy treatment, 97% of the population in 2005, illit- controversy still persists on whether • Epilepsy treatment is available eracy was still great in 2007, with generic drugs are interchangeable universally in the public sector, 10.0% of the country’s population with brand name and similar drugs which dispenses the following over the age of 15 being illiterate.2 regarding efficacy and adverse events. antiepileptic drugs (AEDs) free The Brazilian health system is com- of charge: phenobarbital, car- Generic drugs are considered inter- posed of public and private sectors; bamazepine, phenytoin, val- changeable with the reference, but in 2005 58.6% of health facilities proate, lamotrigine, topiramate, several available generics are not were public and 41.4% were private, clonazepam and vigabatrine. interchangeable with each other. This with 30.6% of the latter having a is even more critical to AEDs that partnership with the public sector. • Oxcarbazepine, ethosuximide, have a narrow therapeutic index like However only 18.5% of the Brazilian clobazam, nitrazepam and dival- phenytoin, which has closer values of population had private health plans.3 proate are only available in pri- therapeutic and toxic levels, and also vate drugstores. During the last 20 years, Brazil de- in the situation of some people with veloped one of the most encompass- • Newer AEDs like levetiracetam, epilepsy (PWE) who only have their ing and efficient strategies in the zonizamide, tiagabine, ganaxolone seizures controlled with high AEDs world to slow the rate of HIV/Aids are not commercially available in serum levels. infection and to care for those al- Brazil, but can be obtained at Bialer in 2007 declared that the bio- ready affected. This program has high price by importation. equivalence tests of generic drugs

8 International Epilepsy News 2009 Seven hundred lower educated PWE) referred break- and thirty one through seizures after switching (731) PWE from (mainly carbamazepine, valproate and six Public System lamotrigine) and 12.2%, increased Hospitals from side effects (carbamazepine, val- ABE chapters in proate and topiramate). The fact that Brazil partici- level of education influenced more pated, with 91% than the socioeconomic class in the from middle/low presence of breakthrough seizures income classes. when the change was done, probably From the PWE reflects a deeper neurological in- older than 18yrs volvement in these PWE.7 These 1/4 had less than findings are similar to the study by 4 yrs of educa- Crawford et al (1996) in the United tion; 1/4 between Kingdom which observed that 29.5% 5 and 8 yrs; 2/5 of 251 interviewed PWE who had at least 9 yrs changed the reference AED by gener- of schooling. ics reported a problem with the con- Two thirds ob- trol of their epilepsy after a ‘switch’, tained AEDs that was validated by the doctor in from public re- 1/3 of the cases, and 11% and 12% sources and 1/5 referred drug toxicity and seizures, only in private respectively. 8 pharmacies; 2/3 In conclusion, different formulations demanded by regulatory authorities received more than one AED (1/2 knowledge was small among the in- are sufficient to compare drug pre- carbamazepine, 1/4 valproate). From terviewed PWE in Brazil, especially scribability, but do not guarantee the 731 PWE, 2/3 did not know the those with less schooling level and of drug switchability, nor that the existence of different AED formula- lower socioeconomic classes, and change between them will be indif- tions (more educated PWE, high in- there was frequent AED formulation ferent to the PWE, and this author come classes responded more cor- switching. Breakthrough seizures suggested that individual bioequiva- rectly); only 1/3 (especially among (14.5%) and increased adverse ef- lence study would be recommended more educated people) knew that the fects (12.2%) were referred when the in order to avoid adverse effects and first produced drug is the reference 6 AED formulation change was done, breakthrough seizures. and 10% considered generics mainly by those PWE with less edu- This issue is very relevant and still “official governmental drugs”. cation, and probably the individuals more important in developing coun- After being instructed about formula- more compromised by the epilepsy tries with limited health expenditures. tions by the interviewers, 1/4 ignored burden. This fact should alert health The “Associação Brasileira de Epi- generics are cheaper than reference experts and regulatory authorities, lepsia (ABE)” (Brazilian Branch of drugs, 1/3 considered their quality especially in developing countries International Bureau for Epilepsy) worse and only 1/3 knew their pack- with limited health expenditures, in applied a questionnaire for PWE with ing details, in Brazil a letter G in a which generics promote a great im- 18 multiple-choice questions regard- yellow band in the box (higher in- pact in the treatment of several medi- ing formulations knowledge come classes were more informed). cal conditions, that AEDs should be (reference, generic and similar drugs) In the last year, 1/4 received different considered a special group regarding and clinical change evidence during formulations (mainly carbamazepine generics and similar drugs public AED formulation switch.7 and valproate) and 14.5% (especially policies.

References: 1. http://devdata.worldbank.org/AAG/bra_aag.pdf. Accessed Mar 22nd 2009. 2. http://web.worldbank.org/WBSITE/EXTERNAL/COUNTRIES/LACEXT/ BRAZILEXTN/0,,menuPK:322351~pagePK:141132~piPK:141107~theSitePK:322341,00.html. Accessed Mar 22nd 2009. 3. http://www.ibge.gov.br/home/estatistica/economia/economia_saude/comentario.pdf. Accessed Mar 22nd 2009. 4. http://www.who.int/hiv/pub/towards_universal_access_report_2008.pdf. Accessed on Mar 22nd 2009. 5. Borges MA, Min LL, Guerreiro CA, Yacubian EMT, Cordeiro JA, Tognola WA, Borges AP, Zanetta DMT. Urban Prevalence of Epilepsy. Populational study in São José do Rio Preto, a medium-sized city in Brazil. Arq Neuropsiquiatr 2004;62(2-A):199-205. 6. Bialer M. Generic products of antiepileptic drugs (AEDs): Is it an issue? Epilepsia 2007; 48(10):1825–32. 7. Guilhoto LMFF, Alexandre V, Martins HH, Santos CM, Lin K, Silva ARCO, Mesquita S, Castro A, Masuko A, Yacubian EMT. Are there Risks in the Use of Different Antiepileptic Drugs Formulations? Report of the Associação Brasileira de Epilepsia trough a survey of People with Epilepsy. J Epilepsy Clin Neurophysiol 2009; 15(2): in press. 8. Crawford P, Hall WW, Chappell B, Collings J, Stewart A. Generic prescribing for epilepsy. Is it safe? Seizure 1996;5:1-5 Acknowledgements: Drs. Elza Yacubian, Veriano Alexandre and Katia Lin for help with the manuscript. Support FAPESP, Brazil.

International Epilepsy News 2009 9

Promising Strategies

2009 Helping to make a difference!

www.ibe-epilepsy.org/promising-strategy

Educational Puppet Show All young children love puppets and puppetry has been shown to be a successful means of educating young people and of dealing with issues that can be otherwise more difficult to confront. ANLICHE, IBE’s Full Member in Chile, will use a puppet family in a video aimed at 7 to 12 years olds. The puppet story will start with the diagnosis of epilepsy in a family member and look at how the family learns to confront and to then accept the diagnosis. The video, which will be shown to more than 5,000 students in 20 primary schools in the Metropolitan Area of Chile, aims to eliminate stigma thereby improving the self-esteem and self-confidence of children with epilepsy. Following screening of the video, a social worker will be in attendance for discussion on the subject. In addition, the Chilean Ministry of Education has agreed to make more than 200 copies of the video available to schools throughout Chile. CHILE

Quality of Life Program MAURITIUS The Mongolian Epilepsy Association’s “Quality of Life” program will conduct health education courses on epilepsy care for neurologists working in district hospitals, family doctors, nurses, people with epilepsy and their families, as well as the public in general and local government officials. It is hoped that the programme will encourage governments and departments of health to address the needs of people with epilepsy throughout Mongolia In a vast country, where most of the population lives in difficult terrain and in rural and isolated areas, and where travel to a major Teacher Training treatment centre is both lengthy and arduous, Edycs Epilepsy Group in Mauritius is creating an Epi- this program will greatly improve the services lepsy Advocacy Network, one action of which will be to available for people with epilepsy living out- train teachers working with special needs children. side the capital Ulaanbaatar. Other elements will include: • Lobbying the health and education ministries to support the initiative; • Development of an Advocacy Tool Kit for school boards; • Training workshops for teachers on the management of epilepsy; • Recruitment of a part time Visiting Liaison Officer to support and facilitate the programme; • Development of an assessment tool to evaluate the MONGOLIA programme.

10 International Epilepsy News 2009

From peanut butter to video production, from puppetry to vegetable farming, the six projects selected for funding under the third round of the IBE Promising Strategies Program will provide training and a means of self-sufficiency for people with epilepsy living in Chile, Togo, Mauritius, Zambia, Namibia, Philippines, Zimbabwe and Mongolia. Promising Strategies has now funded 27 projects around the world, thanks to the generous donations of IBE members and supporters.

www.ibe-epilepsy.org/promising-strategy NAMIBIA DVD Awareness Pack Epilepsy Namibia is producing a DVD presentation, together with printed information on lifestyle management and seizure assistance. The presentation will be translated into six languages, with distribution of 600 units of the completed package. The multimedia pack will explain the condition of epilepsy, lifestyle management and seizure assistance for people with epilepsy and their caregivers who do not have access to resource centres in the rural areas of Namibia. The production will respect indigenous cultures and will be available in the major language groups. Epilepsy Namibia has begun the process of training actors who will perform on the video and has also begun the lengthy process of translating the script into the six languages in which the production is to be produced.

Multimedia Education Pack Epilepsy Awareness & Advocacy Inc (EAAI) in the Philippines is also planning a multimedia pack to educate people about epilepsy. With a DVD and accompanying materials in comic book style, the association will use its nationwide volunteer group to disseminate the programme throughout the Philippines. The education pack will be produced in the five most commonly used dialects in the Philippines to ensure as wide an audience as possible. ZAMBIA Market Gardening Skills Learning a skill increases self-confidence and self- worth and when that skill leads to self-sufficiency the value is multiplied. The Market Gardening Skills project of the Epilepsy Association of Zambia will train people with epilepsy in basic gardening and vegetable production skills. In this way, those at- tending the course will acquire, perhaps for the first time in their lives, the means of generating funds to support themselves and their families. This project follows on the earlier very successful Promising Strategies Project in poultry rearing, THE PHILIPPINES which the association established in 2007.

International Epilepsy News 2009 11

Promising Strategies is supporting programmes in:

• Argentina • Guatemala • Sierra Leone • Brazil • Kenya • South Africa • Cameroon • Mauritius • Tanzania • Chile • Mongolia • Togo • Ecuador • Namibia • Uganda • Ethiopia • Philippines • Zambia • The Gambia • Romania • Zimbabwe

www.ibe-epilepsy.org/promising-strategy Peanut Butter Project Epilepsy Support Foundation of Zimbabwe has been provided with financial support to establish a peanut butter processing project that will benefit 70 rural dwelling people and 30 city dwellers, all of whom have epilepsy. The main objective of the project is to improve income generating skills of the 100 people selected for training, who are all currently unemployed. Training will take place over a period of two months. The association is renovating an existing building at the Epilepsy Centre that will serve both as a training area and an employment workshop, where the peanut butter will be produced. The provision of training, in a skill that can lead to employment, will remove the dependence of these people with epilepsy and give them the opportunity to support their families, including funding for their own medication. The Epilepsy Centre provides the ideal location for the workshop, providing a clinic, social support and is located in Harare, Zimbabwe’s largest commercial zone. ZIMBABWE

TOGO Bridging the Gender Gap In Togo, as in other areas of the developing world, poverty, illiteracy, language barriers and gender dis- crimination are great obstacles to obtaining proper epilepsy treatment. The population to be targeted in the project in Togo, concerned with health care education, are women and children with epilepsy as well as their family members. The project will include: • Knowledge building on seizure recognition and pre- vention, and first aid and drug treatment • A seizure calendar using symbols and pictures • The importance of taking medication as prescribed • Knowing which elements of traditional medicine are helpful and which herbal medicines are harmful • Information on schooling, employment, sleep, and pregnancy.

Find out more Donate to the Program Detailed information on each of the 27 projects The number of projects funded through the Prom- funded through the Promising Strategy Program ising Strategies Program is limited to the level of since 2007 can be found on the IBE website at funding available to IBE. If you would like to help www.ibe-epilepsy.org/promising-strategy us support even more projects, please consider Information on what constitutes an IBE Promising making a donation to the program. Strategy, and how projects are selected, is also Contact Ann Little, IBE Executive Director to find included on this webpage. out more [email protected].

12 International Epilepsy News 2009

Robert Bentley Todd remembered Brainwave The Irish Epilepsy Association marks the 200th anniversary of epilepsy pioneer.

Guidelines needed for photosensitive epilepsy The second keynote address was delivered by Prof Graham Harding, one of the world’s foremost experts in photosensitivity and the developer of the Harding Flash and Pattern Ana- lyser used to analyse broadcast material for harmful images. Prof Harding called for the introduction of broadcast guidelines in Ireland to protect people with photosensitive epilepsy. Currently in Ireland, verbal warnings may be given about upcoming se- quences, but no production guidelines are in place. Prof Harding has assisted with the marks the 200th electrical scientist of all time, that led development of broadcast guidelines 2009 anniversary of the to the development of a radical new in the UK and Japan. He said that the birth of one of the true epilepsy pio- theory of epilepsy based on electrical most common trigger for photosensi- neers - Irishman Robert Bentley “disruptive discharges” in the brain. tive epilepsy in Europe is the domes- Todd (1809-1860). Todd was the first He also anticipated, by over 50 years, tic television set, which causes about man to identify the role of electricity the neuron doctrine that won the 1906 60% of seizures. in epilepsy. To celebrate this mile- Nobel Prize for Golgi and Cajal. “The onset of photosensitive epilepsy stone, Brainwave The Irish Epilepsy Todd presented his epilepsy theories in an individual occurs typically Association recently hosted the in a series of Lumelian lectures to the around the time of puberty and is Robert Bentley Todd Memorial Lec- Royal College of Physicians in 1849, slightly more common in girls. It tures at Trinity College Dublin, the over 40 years before John Hughlings affects approximately one in 4,000 university where Todd himself was Jackson, commonly referred to as the people, or about 3-5% of all people educated. The event took place as father of epilepsy, presented his own with epilepsy. Three quarters of pa- part of Brain Awareness Week 2009. electrical theories. Todd’s earlier tients remain photosensitive for life” Dr Edward Reynolds, former ILAE theory was not referenced by Hugh- said Prof Harding. In relation to President (1993 - 1997), founder of lings Jackson and, as a result, it has broadcast material, Prof Harding said the ILAE/IBE/WHO Global Cam- often been overlooked. Today, Todd that almost 50% of people with epi- paign Against Epilepsy and co-Chair is best remembered for lending his lepsy are sensitive to the 50Hz flicker of the campaign from 1997 to 2001, name to Todd’s paralysis, the tempo- of television, and up to 75% are sen- is an expert on the career and work of rary stiffening of the limbs that may sitive to the 25Hz flicker. Plasma Robert Bentley Todd. At the special follow some seizures. Dr Reynolds, a screen televisions are better that their event in Trinity College Dublin he successor of Todd’s at Kings Col- regular counterparts, he advised, but outlined Todd’s pioneering contribu- lege, described Todd as the “first there is still a long way to go before tion to our modern understanding of outstanding neurologist and neurosci- people are completely safe. epilepsy. entist before these disciplines ex- Photo, pictured from left: isted” and “one of the greatest ever Electrical theory of Professor Graham Harding, Dr John alumni of Trinity College Dublin”. Kirker (President, Brainwave The epilepsy “1809 was a vintage year for distin- Irish Epilepsy Association) and Dr Todd spent all his working life in guished births,” he said. Charles Dar- Ted Reynolds. England, helping to establish King’s win, William Gladstone, Abraham This report is based on an article that College Hospital London in 1840, Lincoln and Felix Mendelssohn were appeared in Epilepsy News, the where he subsequently built a reputa- all born in that year and, according to newsletter of Brainwave The Irish tion as an outstanding physician and Dr Reynolds, such was Todd’s con- Epilepsy Association, and IE News teacher. It was Todd’s collaboration tribution that he deserves to be in- acknowledges the assistance of Mike with Michael Faraday, the greatest cluded in this company. Glynn and Peter Murphy.

International Epilepsy News 2009 13 CreativeSparks

For centuries there has been an important connection between art and epilepsy, both in the representation of the condition through art and literature, and as depicted in the artistic endeavours of persons with epilepsy. On the 7th May Jim Chambliss will see a dream come through when a new website devoted to works created by persons with epilepsy globally is launched. Also, on page 18 you can meet John Bramblitt, an American who had to overcome more than just his epilepsy in order to become an accomplished artist. Cover image: Fear of Fear Itself by Vicki Deutsch www.creativesparks-ep.com Image left: Blindsided by Jim Chambliss

Although Jim Chambliss began his write about the most significant influ- that confronts a person with partial professional career as an attorney, his ences in their art. brain impairment without balancing epilepsy drove him in an entirely Again Chambliss explains: “We are the positive attributes of the individ- different direction - to art. Now his interested in artistic influences of ual as a whole.” goal is to give voice to a global com- people with chronic medical condi- “I have fortunately been able to re- munity of artists with epilepsy, many tions such as epilepsy and migraines. cover, adjust, and move on to a point of whom use their artistic talents as a What is it that sparks creativity?” where the brain injury in 1998 and way of describing their epilepsy, the epilepsy do not hold me back in sensation of having a seizure, or how He adds, “Almost all artists want to have their artwork seen and inter- 2009. My personal experiences have their lives are affected by epilepsy. made me more empathetic and under- Chambliss explains: preted. However, what we want to convey in an exhibit is not cause and standing of the plight and frustrations “One of the things that describes effect; that is, you are not a good of people with epilepsy, while more what I am doing as a goal is to show artist because you have epilepsy, but impassioned to help.” how a picture is worth a thousand rather epilepsy is simply one of the Of the website Chambliss explains: words. And we are going to find over many factors that make a person “Everyone deserves the opportunity a thousand pictures as we begin to uniquely human.” to be understood. We need to express help people understand the individual ourselves. But sometimes in order to with epilepsy rather than just the con- Chambliss’s piece “Blindsided” is do so, we need an open door. We are dition. one example of this: “This is a representation of when I had a seizure in opening the door for articles and art “Some of the artistic expression will December 1998. I stiffened and fell work for those people who have a provide a visual dialogue of what flat on my face on a hardwood floor, gift and who also have epilepsy. occurs during seizures and interictal but I have no memory of the event. “There is still a stigma. I am not an behavioral changes. The nature of our Later my face and persona were not artist because I have epilepsy. I am research focuses on how epilepsy recognizable to me. I had a broken an artist with epilepsy and it opens can, in some circumstances, be ena- nose, chipped teeth, and one eye the door to novel thoughts, to think- bling - not just disabling - through swollen closed.” ing outside of the box.” the stimulation and enhancement of artistic expression.” Chambliss says, “I am often reluctant As a preview, here is a small selec- to speak of the cognitive damage tion from the huge collection that will Chambliss is now just one step away from my brain injury and the altered be on view when the site goes live. from his goal, as the final touches are behaviors from epilepsy, because of After 7th May, you can visit the site put in place prior to the official the stigma that can stem from brain to enjoy more of the images and launch of the website in Melbourne impairment. It is so easy for even the sculptures. You can also contact Jim on 7th May 2009. best intentioned of people to prolifer- at [email protected] Artists whose work will be displayed ate the stigma of epilepsy through on the website are also invited to focusing only on the negative impact www.creativesparks-ep.com

14 International Epilepsy News 2009 Up Against the Glass Phil Thomson Australia I want to make reference in my art to the fact that I have epilepsy because it has such a profound effect on my imagination, visual senses, emotions, and on my perception and observation of every- thing around me. What I would most like people to know about epilepsy is that it is a condition that effects and alters every aspect of human consciousness. It exposes someone who has epilepsy to states of perception that are experienced by relatively few of the overall population surrounding them.

Spring Emma Brockett Australia Our personalities are governed by our brains. Obviously those with epilepsy, in theory, will perceive art and make art in a different way from those who don’t have epilepsy. Also artists with epilepsy may display similarities only found in people with epilepsy, or, the same type of epilepsy. I hope the exhibition makes people start to think about epilepsy and its consequences and opens up a dialogue, which leads to a better understanding of the condition. I think art is a great way to do this as, I believe that, everyone will have an opinion of what they see. I would like to encourage people with epilepsy, including myself, to feel that they can be upfront about their epilepsy and not fear the consequences of such a disclosure. I have been told many times, living in fear, is not a productive way of living at all.

The Guardian Myron Dyan USA I have been showing my work for a few years now, and my main theme is that all people regardless what their condition or circumstance can contribute not only to themselves, but to others as well. I have attempted to show in all my work all the inner pain and beauty that can be manifested with a condition as severe as epilepsy, but also a way out of that pain! Life is not always kind but we must be strong and fight for our dreams and never, never give them up for any one, any condition, or circumstance. Once we have found our way down the pathway to our dreams then giving to others become part of that healing process. So I hope that in some small way my art will help others find their own way to wholeness so that we can all see all the way home!!

International Epilepsy News 2009 15

Portrait of the Artist as a Blind Man

John Bramblitt has epilepsy and is blind; he is also a talented artist

With thanks to Lisa Boylan, Blue Buddha Epilepsy Foundation, who Drowning Again sent us this story. www.bramblitt.net

John Bramblitt’s sight began to dete- As a budding writer and artist who angry. He signed his paintings with riorate when he was 11 years old, but suddenly had to contend with blind- two circles that are X’d out to signify no one realized what was happening. ness and intensifying seizures, John his lost sight. He painted almost con- He started having seizures when he seemed to have every reason—every stantly for six months and, before he was two years old and his doctors excuse—to descend into self pity and knew it, his anger had subsided and think his loss of vision is due to artistic paralysis. But, instead, he he felt calmer than he ever had. He nerve damage, possibly caused by his found a way to overcome the obsta- credits his concentration on projects seizures. cles in his life. The desire to commu- as a calming force that ultimately A student at North Texas University, nicate in images in his head to the allowed him to sometimes anticipate he was majoring in English and crea- rest of the world spurred him on. He his seizures. He would have an aura tive writing when he lost his eyesight just needed to find a way to make it or the sensation of smelling popcorn completely. Suddenly, all of his main happen. burning. The advance notice gave artistic diversions were derailed. He So he taught himself to draw all over him the chance to relax, which would could no longer draw, read or write— again. diminish the intensity of his seizures. passions he believed would carry him He says, “Sometimes I wouldn’t have His first objective was to find a a seizure at all.” through the worst of times. means of marking the outlines of his “For about a year I couldn’t do any- drawings with raised lines— John’s friends encouraged him to thing,” he says. He became deeply something similar to the way Braille exhibit his paintings in local coffee shops. He did, but he was reluctant depressed and worried about being a is written as raised dots. This is what burden on his parents, even though he calls the “bones” of the painting. for people to know he was visually he had been living independently Eventually he came across a fast dry- impaired when they were viewing the paintings. Not because he was since he was 18 years old. ing substance called Puffy Paint, that ashamed or embarrassed, but, he He knew people, even friends, per- served his purpose. John draws says, “What does it matter if the per- ceived him differently because of his mainly in loops and circles and, he son has epilepsy or they’re blind or visual impairment and he wanted to says, each circle represents in his they’re deaf?” prove to them that he was not the mind some colour or shadow or place sum of his disabilities. of light. In the midst of his collection, a laughing blue Buddha takes centre “I wanted to tell people that even Then he searched for the best type of stage. He says he was drawn to the though I have a disability, I’m still paint. Living in Denton, Texas, a figure of Buddha because of his sei- me,” he explains. He wanted to con- college town, because artists’ supply zures. The statue of Buddha looked nect with people visually—for people shop was nonplussed when he asked so calm and happy—like “a calm to look at his paintings and realize, to look at all the paints, touch them little centre of the universe that eve- “Hey, he does relate. He does see the and determine which one was going rything can rotate around.” He wrote world.” to work best. It seems that different in Braille on the canvas, “I am,” to colour oil paints feel unlike one an- “Your eyes don’t actually make the remind him to remain in the moment. image. It’s just information coming other because they are made of dif- in, and your brain forms the images ferent substances. John is married to Jacqi, and they that you see,” he says. When he first started paining, he was have a 10-month-old son, Jackson.

16 International Epilepsy News 2009 Berlin Brain Works: EPICURE hosts its 3rd annual meeting in Berlin Janet Mifsud reports Funded by the EU 6th Framework Programme Project LSH-037315

Over 100 participants attended the 3rd presented some of the data from the new co-operation between scientific Annual Meeting of the EPICURE numerous scientific publications that researchers and partners in the project. project, which was held at the Charite have emerged from the project over The official meeting then continued in February. the last year. with the organization of a week-long The meeting was opened by Prof The first day focussed on Acquired hands-on training session at the Insti- Giuliano Avanzini, coordinator of Channelopathy and Neuronal Net- tute of Neurophysiology at the EPICURE, who reported on the cur- work Reorganisation, and Pharmaco- Charite, which was attended by over rent status of the project, now practi- genetics of Refractory Epilepsy, 50 participants including young re- cally half way through its 48 months Mechanism of Drug Resistance and searchers, tutors and lecturers. term. Carla Finocchiaro from CF New Therapeutic Strategies. Data The EPICURE annual meeting coin- Consulting, the professional company from the EPICURE Brain Databank cided with the Berlin Film Festival. administering the project, then pre- was presented showing the impor- EPICURE may not have been so tance of a European critical mass in sented a review of the management glamorous, nor attracted as much aspects of the project. the collection of such samples. media attention as the more famous Janet Mifsud, from the Dissemination Professor Heinemann underlined the festival, but the very active interac- Board, reported that during 2008 importance of having valid models in tion, networking and fruitful discus- EPICURE participants had produced epilepsy research that can help by sions among the participants certainly several scientific publications and leading to an epi‘cure’ for patients made up for this. with his now famous quote: ‘the best presented results at several confer- Editor’s note: model of a cat is a cat’. ences, and that a Google search for As IBE is the EPICURE partner EPICURE has increased to 10,000 During the second day the emphasis charged with dissemination of the hits. Janet Mifsud also emphasized was on progress made in the work project, it was good to note that in a the importance of reaching out and packages related to Genetics of Hu- Google search on ‘epicure’ the IBE informing other scientists, patient man Epilepsy and Functional Conse- website is in the first 3 results and organizations and the lay media quences of Mutations in Ion Channel tops the list of results related to the about the project. Genes and updates from the work project. IBE has a page dedicated to The meeting continued with an over- package on Epilepsy and Development. EPICURE on its site, which is regu- view of the various EPICURE work In his concluding remarks, Prof larly updated as new information is packages. During these sessions, both Avanzini commented on the positive received from the other partners in young and professional investigators effect of EPICURE in stimulating the project. BUDAPEST 2009 With the 28th International Epilepsy Congress looming on the horizon, we would like to remind you of some of the activities planned by IBE for its Members. General Assembly Poster Display The General Assembly begins at 12:00 on Visit the special Members Poster Display to Wednesday 1st July. Agenda and reports will find inspiration for future activities. be circulated shortly. IBE Exhibition Stand Regional Committee Meetings Drop by the IBE stand to meet up with friends Each Regional Committee - Africa, Eastern old and new. Both the Global Campaign Mediterranean, Europe, Latin America, South Against Epilepsy and EUCARE will have stands East Asia and Western Pacific - has a meeting next to the IBE stand. planned during the congress.

International Epilepsy News 2009 17 The Jamaican Model

Advancement of Epilepsy Health Care in Poorly Served Populations

Amza Ali MD., FRCP, President, Jamaican League Against Epilepsy (JLAE)

Approximately 90% of people with vices were extremely limited with country or region. These fourteen epilepsy (PWE) in the world do not most patients treated without ever recommendations are outlined below. currently receive adequate care1. In- having an EEG performed. Widely deed, most obtain either no care or held misperceptions about epilepsy Recommendations inappropriate and ineffective treat- were observed in the evaluation done 1. Form local chapters of the ment. Disparities in epilepsy care for the North American Report on ILAE and IBE. These must, from may be increasing, not only between Epilepsy. Most PWE were unem- inception, agree to work together countries and regions but also within ployed and driving was prohibited, as closely as possible, with mutual individual countries, due to widening although medical practitioners tended respect for their differing areas of gaps in economic circum- to follow the expertise. stances. This situation is not older UK restricted to developing Until recently, rules preclud- 2. Choose highly motivated peo- countries but, of course, is “ no structured ing driving ple to form the core of each group, much more pervasive in until after 2 preferably people who already such areas. programme for years of sei- know each other and can work Jamaica is a small inde- epilepsy health zure freedom. well together. pendent island in the Carib- care existed in In recogni- 3. Affiliate your chapters with bean, geographically lo- tion of the well established chapters in other cated approximately 450 Jamaica severe defi- countries. They serve as models miles southeast of Florida, ciencies in and as motivation. Distance is USA. It is roughly 150 miles long delivery of appropriate health care to much less an obstacle than before and about 60 miles at its widest. The PWE in the island, the JLAE was and much can be achieved utilising population is approximately 2.65 launched in 2001 as part of the the internet and video- million people. The island is classi- Global Campaign Against Epilepsy. conferencing. fied as middle income by the World As an English-speaking island it has 4. Determine the existing knowl- Health Organisation (WHO). been included, for administrative edge, attitudes and practices Until recently, no structured pro- purposes, in the North American Re- (KAPs) to epilepsy in the country/ gramme for epilepsy health care ex- gion of the International League region. This will help to identify isted in Jamaica. Epilepsy care was Against Epilepsy2. where to focus energies and re- delivered solely on a one-to-one basis In addition, since epilepsy is as much sources. by individual medical practitioners to a social disorder as a medical one, a 5. Education: Inevitably, educa- their patients with varying seizure local chapter of the International Bu- tion will be essential. Improving control outcomes, depending on indi- reau for Epilepsy, the Jamaican Epi- education must focus on 3 major vidual proficiencies. lepsy Association (JEA) was groups: No facilities existed for regular edu- launched in 2002. Over the years the • Health Care workers: to cation of PWE, the population as JLAE and JEA have identified sev- improve diagnosis and whole, or medical practitioners after eral areas that should be the focus of treatment. graduation from medical school. any initiative to improve epilepsy Electroencephalography (EEG) ser- care in any currently underserved • Patients and their families:

18 International Epilepsy News 2009 to deal with emergencies 8. KAPs should be continually mism as, unless the situation is and to understand the im- reassessed, to determine on an dire, there often can be found portance of adherence to ongoing basis the impact of inter- funds to make significant local treatment. ventions and to determine areas to interventions. • The population as a whole: focus on. 12. There is no need to re-invent to address problems related 9. Research: Apart from KAPs, the wheel. Look at what has been to misperceptions and so- other research must be conducted. done elsewhere and apply to local cial stigma. Develop a rela- It must be evident that not all re- circumstances. tionship with the media to search in highly advanced regions 13. Be persistent! Obstacles will keep Epilepsy in the News! can be applicable, or even be rele- arise but, working as a group, 6. Advocacy: Focus on areas vant, to less fortunate regions. these can be overcome. Therefore it is crucial that research determined as most needed from 14. Last but not least: Recognise the baseline KAP study. Usually be done in every area where epilepsy care is being advanced, to everyone’s contributions including the following two areas will re- funding sources and volunteerism. quire particular attention. better understand and address local problems. It will serve as a guide References • Employment to the further refinement of efforts 1. Epilepsy Care in the World: Re- • Driving and can also be rewarding to the investigators from an academic sults of an ILAE/IBE/WHO Global 7. Service: Determine areas of perspective. Conceivably, the pub- Campaign Against Epilepsy Survey. deficiency from the KAP and fo- lication of good data might help to Epilepsia July 2006 Vol 47 Issue 7, cus on them. Fundamental to ap- attract funding from international 1225-1231. Dua T, de Boer Hanneke, propriate treatment is to make digi- organisations as well. Prilipko L, Saxena S. tal EEG available. It is critical to 2. ILAE Report: Epilepsy in North ensure that EEGs are read by suita- 10. Develop sub-committees to America:Theodore W.T, Spencer S, bly trained electroencephalogra- work in the principal areas of clini- Wiebe S, Langfitt J.T, Ali A, Shafer phers. If necessary, an individual cal service, research and advocacy. P.O, Berg A.T, Vickrey B.G. Epilep- should be identified and sent for Match individual skills to areas appropriate training. This individ- best suited to each member. sia 2006 47 (10) 1700-1722. ual can, in time, identify and train 11. Financial limitations should others as required. prompt creativity rather than pessi-

8th AOEC 2010 Melbourne was recently announced as the venue for the 8th Asian Oceanian Epilepsy Congress, which will take place next year. This will be the first IBE/ILAE congress to been held in Australia since Sydney hosted the 21st International Epilepsy Congress in 1995. The first announcement is now in circulation and the congress website will soon be live. In the coming months we will also be bringing news of the special programme for people with epilepsy and their carers to be held during the congress. For further information or to receive a copy of the first announcement contact [email protected]

International Epilepsy News 2009 19 28th International Epilepsy Congress Budapest, Hungary June 28th—July 2nd 2009

Congress Secretariat: 7 Priory Hall, Stillorgan, Dublin 18, Ireland Telephone ++353-1-20-567-20 Email [email protected] www.epilepsybudapest2009.org 20 International Epilepsy News 2009