ILAE International League Against Epilepsy
    
 Login
 Search search
 Contact Us

 
Ilae Facebook Ilae Twitter

Epigraph Volume 8 Issue 4, Fall 2006

 

From The Information Officer

Nothing is a more important yardstick by which an organization such as the ILAE should be judged, than its commitment to improving epilepsy care in the least fortunate countries; arguable we as a professional community do not act enough in this regard.

To highlight what can be done, this issue of Epigraph profiles projects from Mali and Senegal, which are outstanding models of good medical care conducted in difficult circumstances, and also the Brazilian project of the ILAE Global Campaign Against Epilepsy. These are all remarkable achievements and a tribute to those involved. Epilepsy on the African subcontinent causes misery and privation to many individuals and families, and is under-resourced. The alleviation of hardship can be achieved only by sustained and concerted action and the two African projects are exemplary in this regard.

Also notable in these projects are the way in which clinical care and research and teaching are intermingled, making the point (often lost) that much best clinical practice occurs in a research environment.

The report of a final workshop of the ILAE Global Campaign Against Epilepsy Brazilian project provides another example of what is possible to achieve by enthusiasm and dedication. This project has resulted in the establishment of a National Epilepsy Programme, about to be launched by the Brazilian Health Ministry, for the promotion of epilepsy in primary care settings. By a determined action such as this, it is often possible to overcome the usual hurdles of political and individual self-interest, which impede the progress of medicine and science in many countries; ILAE should be in the forefront of this effort worldwide.

Back to home territory - this issue of Epigraph also contains an invitation for ILAE members to apply for the post of ILAE Information Officer. This is an interesting and worthwhile position, and ILAE hopes that there will be an enthusiastic response to the invitation. As mentioned in the announcement, Peter Wolf or I would be pleased to discuss or answer queries.

Another significant ILAE development, described in this issue of Epigraph, is the establishment of a new prize – the Morris-Coole Prize – which will be awarded for the best published paper in Epilepsia. Its intention is to recognize and stimulate research achievement and the first recipients of the prize will be announced next year.

In 2009, the ILAE celebrates its centenary – and there are several projects already underway to prepare for this anniversary. Amongst these are the establishment of a historical archive and book, and ILAE is keen to acquire material for both. Brief details of these are outlined in the pages of this issue of Epigraph.

Finally, there is the usual listing of listing of conferences and ILAE information and the Episcope feature. As always, we are keen to hear from you and to receive submissions for consideration of publication in Epigraph.

Simon Shorvon
ILAE Information Officer and Editor of Epigraph

An Epilepsy Network In Rural Mali

Following the installation in rural areas of Mali, of nearly a hundred general practitioners, made possible by the relentless work of the Santé-Sud NGO (Marseille, France), and funded by the European Community, a network of 6 GPs was set up to offer comprehensive diagnosis and care for patients with epilepsy in areas where nothing was available. Such actions necessitate both expertise on epilepsy for accurate diagnosis, and drugs for treatment. The RARE (Reseau Action Recherche Epilepsie, network action research epilepsy) was launched by Dr Guy FARNARIER (Marseille) and Dr Karamoko NIMAGA in 2003, in collaboration with the Association of Rural Doctors of Mali. There have already been 3 teaching seminars (with Dr Pierre GENTON, Marseille), together with field work with patients, carers, and, in 2005, the first EEG recordings in rural areas. The level of expertise about epilepsy has markedly risen among doctors, mainly within the RARE network, but also among other rural general practitioners, due to the regular contacts with RARE members. About 1,000 patients with epilepsy have now been included in a prospective database, and treated, either with phenobarbital or with valproate, both drugs made available to the public at locally affordable prizes, in part thanks to the « Access to Drugs » international programme of Sanofi-Aventis. The epilepsy network already includes other rural practitioners, and will in the near future introduce both other anticonvulsants, and EEG.

Karamoko Nimaga, Bamako, Mali - santesud@afribone.net.ml
Guy Farnarier, Marseille, France - guy.farnarier@ap-hm.fr

A Recognition For A French-Senegalese Epilepsy Project

A CORUS project (University and Scientific Research Cooperation) on the detection of familial epilepsies in Senegal was funded by the French Foreign Ministry (MAE) and the Research Institute for the Development (IRD) and was launched in 2002. To this day, it has resulted in the identification and characterization (still in progress) of 25 families with various forms of genetically determined epilepsies. The programme was coordinated in Senegal by Pr Lamine Gueye (Université Cheikh Anta Diop, Dakar), and in France by Dr Guy Farnarier (Université de La Méditerranée, Marseille). The Northern collaborators include Dr Pierre Szepetowski (genetics) and Dr Pierre Genton (clinical and EEG phenotyping), and the Southern participants Dr Moustapha N'diaye (epilepsy clinic), Drs Leopold Boissy and Moustapha Sarr (EEG) and Dr Fatou Diallo (genetics).

The help for development is an important consequence of this project. In Dakar, Senegal, the most visible results are the creation of (1) an epilepsy clinic, a first in Western Africa, (2) a clinical neurophysiology unit with video-EEG that has been available to patients for nearly two years now and (3) a molecular biology unit for the processing of DNA samples. The training in neurological sciences for students arriving from many African countries and the aim to constitute a pole of excellence in neurogenetic are other consequences of the project.

This project was also supported by the French League Against Epilepsy, who gave Dr Diallo and Dr Boissy a research grant, and by the Senegalese League Against Epilepsy.

This programme was distinguished among 180 projects funded by CORUS and was presented by the authorities of the MAE and IRD to the press in Paris on 6 June, 2006.

Lamine Guèye, Dakar, Sénégal: lamineg@gmail.com
Guy Farnarier, Marseille, France: guy.farnarier@ap-hm.fr

Report of IV Workshop of Global Campaign – Epilepsy Out Of The Shadows: Brazilian Demonstration Project

Report of IV Workshop of Global Campaign – Epilepsy Out Of The Shadows: Brazilian Demonstration Project

Paula T. Fernandes; Ana Lúcia A. Noronha; Ley Sander; Carlos Acevedo; Li M. Li

ASPE (Assistência à Saúde de Pacientes com Epilepsia)

Since 2002 ASPE (Assistência à Saúde de Pacientes com Epilepsia) has carried out Demonstration Project (PD) in Brazil, as a part of the Global Campaign “Epilepsy out of the Shadows”, led by WHO, ILAE and IBE The main aim of the PD is to develop a treatment model for people with epilepsy in primary health care settings. This project has targeted regions in Campinas and São Jose do Rio Preto, both in Sao Paulo State. A task force has been established to assess strategies to expand this nationwide. The PD was carried out in six phases as shown in figure 1: 

“Epilepsy out of the Shadows”, held on May 4-5th of 2006, in Campinas. Over 40 people attended, including Prof. Li Li Min, PD coordinator; Prof. Ley  Sander, Scientific Coordinator of the Global Campaign; Dr. Carlos Acevedo, chair of the Latin American Epilepsy Commission and the team that carried the PD. The workshop had two parts, the first reviewed the results of the project and the second, discussed the establishment of a National Epilepsy Policy.

The workshop was opened by Paula Fernandes, president of ASPE.  This was followed by Prof. Li Li Min discussing the main objective of the workshop and by Prof. Ley Sander reviewing Demonstration from other countries and the general the objective of the Global Campaign.  After this introduction, the results of phases of Brazilian PD were presented and the conclusions of each phase were presented here:

  • Phase 1 – Epidemiological survey: The prevalence of epilepsy in Brazil is similar to other resource-poor countries, and the treatment gap is high. Epilepsy is more prevalent amongst less wealthy people and elderly people (over 59 years old) are those mostly affected by active epilepsy. Nevertheless treatment gap is similar amongst different social classes. Furthermore, commitment of the Brazilian health system towards improvement of the quality of health management for people with epilepsy and consistent and regular AED supply is urgently needed.
  • Phase 2 – Capacitation courses: The capacitation courses were divided in three parts: health professional; replicators and teachers. The health professional capacitation courses promote security to deal with patients with epilepsy, better knowledge about the condition, less beliefs and myths about epilepsy, more knowledge about how to deal with AEDs and less neurologist referral. The replicators’ course promotes low cost and highly effective actions in the management about epilepsy and can quickly expand capacitation program nationwide. The teacher’s capacitation course is effective and has a long term effect on knowledge, attitude and perception to teachers of fundamental school.
  • Phase 3 – Stigma identification: The research performed with 1,850 people of the community showed that the negative social attitudes and feelings observed in certain segments of the community can create inadequate behavior, difficulties in social relationships, work, school and consequently perpetuate stigma in society. The magnitude of stigma is different within different segments of local society (gender, social class, school level and religion) and for this reason, mass media campaigns should target these social segments in order to fight prejudice and improve the social acceptance of people with epilepsy.
  • Phase 4 – Mass media: We observed that the language expression influences the imaginary perception and has consequence in the stigma perception about epilepsy. In this context, we should consider the proper usage of language as it matters for bringing epilepsy out of the shadows. Furthermore, effective mass media campaigns should consider specific language of the different segments of the society to take out labels and improve social acceptance and reduce stigma.
  • Phase 5-6 - Data analysis: With this PD, we developed a model of epilepsy treatment for primary health level based on existing health system articulated on strategic actions centered on the health care providers and the community. We demonstrated that using our model, people with epilepsy can be effectively treated at the primary health level, with important reduction in seizure frequency, as well on general well being. This model can be applied nationwide, as the key elements do exist provided that the strategic measures are put forward in accordance with local health providers and managers
  • National phase: The modules created and developed in this PD (capacitation, de-stigmatization, social network) can be implanted easily and tailored to the necessities of each region of the country.

The achievements of the four years of activities were discussed particularly the hurdles and pitfalls but as well as the positive lessons. This was an excellent opportunity to review critically the whole exercise, exchange experiences and plan for the future. After the presentation of the results, Prof. Ley Sander presented future activities of the Global Campaign. He also used the occasion to congratulate the successful completion of Brazilian PD.

In the second part of the workshop the implementation of a National Public Policy for Epilepsy was discussed. Firstly Valquíria Gonçalves, chairperson of Epi-Brasil, the National Federation of Epilepsy Associations, presented the patient’s perspective of epilepsy, emphasizing the need of qualified health professionals, the need for free antiepileptic drugs and the importance of psychological management. Prof. Fernando Cendes, representing the Brazilian League of Epilepsy, exposed the perspective of health professionals, highlighting the common effort of the professionals in the area, in primary and  secondary health care and the associations of patients with epilepsy. Dr Juarez Furtado, representing the Health Ministry, presented the governmental perspective and emphasizing the importance of all society segments to be organized if they are to reach their objectives. The main goals of the national epilepsy policy are to reduce stigma and improve the quality of life of people with epilepsy. Improving the qualifications of health workers and implementing a national Epilepsy Programme will be part of this effort. Hopefully soon the regulations to formalize the programme will be approved by the Ministry of Health. Therefore, Brazil will have a will have a National Epilepsy Programme and a major objective of Brazilian PD will have been achieved.

 

The Centenary History Of The ILAE And Historical Archive

As many readers will know, in 2009 the ILAE celebrates its centenary. As part of this celebration, the ILAE Executive has commissioned two projects. The first is a written Centenary History of the ILAE, scheduled for publication in 2009. This will be a book documenting the history of the ILAE over this period, the history of epilepsy and the role of the ILAE in this history of epilepsy The second project is the collection of an archive of historical material related to the ILAE. As part of this, it is proposed to make a collection of taped interviews with figures in the ILAE (an ‘Oral History’ collection) about their memories of the development of the ILAE and of epilepsy in their countries, and relevant personal recollections. This archive would be made available to those interested in epilepsy and be an important historical source.

We are keen to involve members of the ILAE in these two projects, and invite the assistance of ILAE members worldwide in several ways:

To collect (or to be informed about) sources of historical material (eg papers/reports/books/memoirs or any other material) which might be relevant to the written history. Also, we are keen to collect names (+contact details) of individuals whom possibly could be contacted to provide such information.

To be informed of names (+contact details) of individuals who you feel could be interviewed on tape as part of the oral history project.

It is important for the ILAE to document its history and no doubt there is a great deal of material around the world which should be included in the history. If any ILAE member can help, please contact Simon Shorvon (Institute of Neurology. Queen Square. London WC1N 3BG. UK / s.shorvon@ion.ucl.ac.uk).

Simon Shorvon (on behalf of the ILAE History Project)

 

Applications Are Invited For The Post Of ILAE Information Officer

ILAE members are invited to apply for this executive post. The appointee has overall responsibility for ILAE information and communication, and reports to the ILAE President. This is an unpaid position and will be appointed from April 1st 2007. The post entails the following duties:

(a) ILAE Newsletter (Epigraph)
The appointee assumes the role of Editor of Epigraph, the ILAE newsletter. This is published currently 4 times a year (3 online publications and one print publication). The Editor has overall responsibility for the newsletter and its content and editorial policy. The duties involve the commissioning of articles, their editing, planning content for future issues, writing editorials and dealing with day to day correspondence in relation to the newsletter. 

(b) ILAE Website (www.ilae.org)
The appointee assumes the role of Editor of the ILAE Website (www.ilae.org). The Editor has overall responsibility for the structure of the website, its content and for its editorial policy. The post involves the commissioning and editing the content of the website, overseeing the updating of the website, deciding and planning content, and dealing with day to day correspondence in relation to the Website. The appointee also becomes Chair of the ILAE Website task force and is responsible for convening 2-3 meetings a year of the Taskforce, taking the minutes of the meeting and reporting to the Executive Committee on task force matters.

(c)  ILAE Archive
The appointee assumes oversight of the ILAE archive held in the Swiss Epilepsy Centre in Zurich. The appointee is responsible for archive policy and for commissioning accessions to the archive.

(d) ILAE Executive Committee
The appointee becomes a member of the ILAE Executive Committee, and is expected to attend the bi-annual meetings of the ILAE Executive Committee and also the joint annual meetings of the ILAE and IBE Executive Committees. The appointee is responsible for the preparation of reports for the ILAE Executive Committee meetings and for inclusion in the ILAE Annual Report, and for presentations at other ILAE events (eg chapter convention).

(e)  Other points
The appointee has overall responsibility for ILAE communications and information and for their development. The appointee will be expected to make recommendations for the strategic development of ILAE communication policy and to carry out other duties as directed by the ILAE President.

The appointee is assisted currently, in relation to tasks (a) and (b) above by the ILAE Administrative Office which provides technical, logistical and editorial support.

The appointee must be able to communicate fluently in the English language and it would be desirable for the appointee also to have competence in other languages. He/she must be completely familiar with a range of conventional IT facilities. He/she must have a detailed knowledge of epilepsy and the ILAE and the most suitable candidates will be those who are medically qualified, have specialized in epilepsy and who have been previously involved in ILAE. It is important for the appointee to be well organized, efficient and enthusiastic and he/she must be able to meet deadlines. The post requires a significant work commitment.

The post has been held since 1997 by Dr Simon Shorvon, and further details can be obtained from him (s.shorvon@ion.ucl.ac.uk) or from the ILAE President, Professor Peter Wolf (PeterW@vestamt.dk)

Applications should include a CV and an outline proposal, and sent to the ILAE President, Professor Peter Wolf by post or email.

Peter Wolf
Danish Epilepsy Centre
Kolonivej 1
DK – 4293 Dianalund
DENMARK
E-mail: peterw@vestamt.dk.

The deadline for submission of applications is January 31st 2007.

 

Does Anyone Have Back Copies Of Epilepsia Between 1959-1990?

Epilepsia is the international scientific journal of the ILAE, and as such is its primary scientific output. It has been so since the very inauguration of the ILAE in 1909. Since then it has been published in four series (1909-1915, 1937-50, 1952-1956 and 1959-present day). Within these pages can be traced the evolution of scientific thought about epilepsy over the past 100 years and the journal has published classic articles on many aspects of epilepsy. Epilepsia  is now available on-line as well as in a print edition.

The Editors of Epilepsia and the ILAE are now keen to digitise all back issues of the journal from 1909 and to provide a complete on-line electronic archive of all issues which can be accessed via the ILAE and Epilepsia websites.  We see this as a very important way of disseminating knowledge and understanding of epilepsy. The task of copying back issues is now underway, and we have to date complete editions of epilepsy from 1909-1956 and from 1992-the present day.

However, our collections between 1959-1991 are incomplete and we are therefore putting out this call to inquire whether anyone has in their personal (or institutional) libraries a run of the printed issues between these dates (or part of a run), and would be willing to donate these to the ILAE for the purposes of copying and digitisation. Unfortunately, the process of copying will result in the dismantling of the print issues and therefore, they will not be able to be returned. However, we would be happy to compense the donor and also to provide a CD-ROM of all back issues to anyone willing to donate their back issues.

If anyone therefore has a run (or part-run) of back issues of the journal between 1959-1991, and is willing to donate them to the ILAE, please contact Simon Shorvon (Institute of Neurology. Queen Square. London WC1N 3BG. UK  /  epilepsia@epilepsia.com ).

Simon Shorvon (On behalf of the ILAE and Editors of Epilepsia).

 

East Mediterranean Epilepsy Congress Re-scheduled

The 1st East Mediterranean Epilepsy Congress scheduled for last spring in Sharm-El Shek has been re-scheduled. The Congress will take place in Luxor and the new dates will be 21-24 February 2007.

The 1st EMEC will be a valuable occasion for neurologists and epileptologists from the Eastern Mediterranean countries and the rest of the world to exchange and share knowledge about epilepsy research and patient care. Regional and international speakers will discuss a range of scientific and clinical topics that are highly relevant to epilepsy practice in the region, and the scientific program will include didactic lectures, poster sessions and satellite symposia.

For more information, visit www.epilepsyluxor2007.org

 

Michael Prize  2005 /2006

For the best contribution to scientific and clinical research which promote further development in epileptology. The MICHAEL PRIZE is one of the most highly regarded international awards for the best contribution to scientific and clinical research promoting further developments in epileptology; it is awarded biannually and specially designed to attract younger scientists (under 45 years of age).

The prize money is 15.000 Euros. Publications which have appeared in 2005/2006 or papers of the same period and not yet published will be considered.

Deadline: Articles and papers, together with a curriculum vitae, should be submitted in triplicate to STIFTUNG MICHAEL until December 31, 2006 latest.

The MICHAEL PRIZE is sponsored by UCB International.

Address for applications or for more information:
STIFTUNG MICHAEL
Muenzkamp 5
D-22339 Hamburg / Germany
Tel.:  +49-(0)40 5388540
Fax: +49-(0)40 5381559
E-mail: stiftungmichael@t-online.de

 

Morris-Coole Prize

ILAE awards a new annual prize of 10,000 euros for the best paper published in EPILEPSIA during the previous calendar year.

The ILAE is proud to announce the establishment of a new prize, the Morris-Coole prize, of 10,000 euros. The prize will be awarded annually for the paper published in EPILEPSIA during the previous calendar year, which has, in the judges’ opinion, made the most significant advance in knowledge in the field of epilepsy. The winning paper will be a full-length original article (not a review etc), and should not have been the subject of any earlier prize or award.  The paper can report either basic or clinical findings, and papers in any research field and from any region will be eligible.

The Judging panel will comprise the President of the ILAE and the two Editors-in-Chief of EPILEPSIA. The panel will consider a short-list of papers prepared by the Associate Editors of EPILEPSIA. The prize will be awarded during the opening ceremony of the International or regional ILAE conference. The winning researchers will also be invited to present their findings at the Morris-Coole lecture at the conference.

The 2006 award will be announced at the XXVII International Epilepsy Congress in July 2007.

The prize was established through the generosity of Mr Christopher Morris-Coole and his wife Sandra, with the intention of stimulating epilepsy research and rewarding young researchers in particular in order to motivate and provide an incentive to excellence.

 

Most Recent Topics in The Discussion Groups
  • Epilepsy Definition
  • Lamotrigine
  • GEFS+
  • Intractable Epilepsy
  • Medical Mission For Epilepsy

http://www.ilae.org/Visitors/Centre/discussion.cfm

Episcope

WG Lennox: The Laymen's League against Epilepsy in America.

Epilepsia 2nd Series. Vol 1, no. 4 1940; 261-2

This is a paper of historical and social rather than scientific interest. Lennox describes the setting up of a lay organization for epilepsy in America. The establishment of lay groups was an important initiative, and these organizations have since flourished to become integral parts of the epilepsy scene. Lennox makes mention of the difference between the European and US models, with the main focus of lay organizations in Europe being the support of epilepsy institutions and colonies, and of those in the US the provision of support for more academic and educational activities. As a sign of this, the American organization for instance provided vital financial support of Epilepsia during the war years. In America, wrote Lennox, the objectives of the Laymen’s League were of ‘uniting physicians and the public in spreading a true knowledge of epilepsy and in gaining new knowledge’.

Click here for the full text, on the EPILEPSIA website.  http://www.blackwell-synergy.com/toc/epi/1/4

 

1st North American Regional Epilepsy Congress

North American Regional Epilepsy Congress

1st North American Regional Epilepsy Congress
1 - 5 December 2006
San Diego, California USA

Congress Home Page

1st Latin American Summer School on Epilepsy – LASSE

1st Latin American Summer School on Epilepsy – LASSE
“Epilepsy: Translating basic knowledge into clinical applications”
4 - 14 February 2007
São Paulo, Brazil

Registration and additional information: Information (.doc)
Esper Cavalheiro – esper.nexp@epm.br

1st East Mediterranean Epilepsy Congress


1st East Mediterranean Epilepsy Congress
Luxor, Egypt
21 - 24 February 2007

www.epilepsyluxor.org

1st London Colloquium on Status Epilepticus

1st London Colloquium on Status Epilepticus
London, England
12 - 14 April 2007

 

www.conference2k.com/statusconf.asp

Faculty and Program (.doc)

FIRST LONDON COLLOQUIUM ON STATUS EPILEPTICUS

Registration is invited for this conference, to be held in London on April 12-14 2007.  Attendance is open to any clinician or scientist. Details of the conference and registration are available on www.conference2k.com/statusconf.asp .

The colloquium will be a landmark meeting in the field of status epilepticus, following in direct lineage the Marseilles Colloquium held in 1962, and the two Santa Monica meetings on this topic held in 1980 and 1997. The colloquium is the first of two planned meetings, the second of which will be held in Innsbruck in 2009.

The purpose of the conference is:

  • To summarise current knowledge in key clinical and basic science areas
  • To define optimal clinical practice
  • To debate controversial issues
  • To point to future clinical and scientific research areas

The faculty members are major clinical and scientific figures in the field of status epilepticus from around the world, and a global perspective is being taken.

The programme is divided into three sections:

  • Molecular nature of status epilepticus
  • Clinical aspects of status epilepticus
  • Outcomes of status epilepticus.

Poster presentations are invited from any registrant (details and application forms are available on www.conference2k.com/statusconf.asp ). Applications can be submitted on any clinical or scientific subject in the field of status epilepticus. The closing date for submission is December 31st 2006.

Registration is now open and is restricted to 250 persons, so please register quickly to void disappointment. In addition an attractive social programme is offered.

The conference is being held under the patronage of the ILAE Commission on European Affairs, the ILAE Commission on Therapeutic Strategies, the British and Austrian national ILAE chapters, University College London (Institutes of Neurology and Child Health) and the Medical University Innsbruck.

This meeting is supported by the ILAE and by an educational grant from UCB.

 

IX Workshop on Neurobiology of Epilepsy (WONOEP 2007)


IX Workshop on Neurobiology of Epilepsy (WONOEP 2007)
Sheraton Langkawi Resort, Teluk Nibong, Langkawi Island, Malaysia
3 - 6 July 2007

http://www.wonoep2007.univ-mrs.fr/
First Announcement

27th International Epilepsy Congress


27th International Epilepsy Congress
Singapore
8 - 12 July 2007

www.epilepsysingapore2007.org
8th European Congress on Epileptology


8th European Congress on Epileptology
Berlin, Germany
21 - 25 September 2008

Other Meetings

9th Asian and  Oceanian Child Neurology Congress
24-27 January, 2007
Waterfront Hotel, Cebui City, Cebu Philippines
www.aoccn2007.org

International Symposium on Biology of Seizure Susceptibility (ISBSS)
(The 10th Annual Meeting of Infantile Seizure Society)
7-8 April, 2007
www.iss-jpn.info

EPIGRAPH

Share with your colleagues
It is intended that Epigraph be circulated to all ILAE members world wide. If you are aware of a member not on the e-mail circulation list, please send details to the Epigraph office at epigraph@ilae.org.

Submit an article
 If you would like to submit an article to Epigraph, please send suggestions or ideas to epigraph@ilae.org.

Remove from mailing list
If you no longer wish to receive Epigraph via e-mail, please send an e-mail with “Unsubscribe” in the subject line to epigraph@ilae.org or click here.

 

Home | Contact Us | Privacy & Security | Login | Sitemap

© 2014 International League Against Epilepsy