Giuliano Avanzini

Many of the initiatives announced in my previous annual report are now fully operational.

The Headquarters Office in Brussels has now become an indispensable reference point for the ILAE. It has not only significantly facilitated the duties of our Administrative Director Peter Berry, but the services it provides have also become familiar to all ILAE officers (including Commission Chairs) and members, ILAE Chapters, and the other organisations with which we regularly work, such as the International Bureau for Epilepsy (IBE) and the World Health Organisation (WHO). Thanks to the outstanding commitment of the two administrative assistants responsible for the Office, Delphine Sartiaux and Nele Devolder, the greatly improved communications with our Chapter members has given them a stronger feeling of their direct involvement in ILAE life.

The effectiveness of the Office was clearly demonstrated by its careful follow-up of the election process, which meant that many misunderstandings were avoided and led to an unusually high percentage of voting Chapters and an unusually small number of invalid votes.

The organisation of Chapter Conventions has also improved communications between ILAE offices/officers and ILAE Chapters by giving Chapters an opportunity to express their own views, needs and proposals concerning ILAE life in a much more open and extensive manner than that offered the ILAE General Assembly. The first Chapter Convention was held on 5 October 2002 in Madrid (Spain) during the 5th European Epilepsy Congress and allowed the delegates of more than 40 Chapters to review and discuss the main objectives of the League, as well as its policies relating to regional organisations, the production and circulation of scientific and professional information, its educational and research activities, and its office organisation. The second (but actually the first with worldwide coverage) was held during the 25th International Epilepsy Congress in Lisbon (Portugal) and saw the participation of delegates from 52 Chapters. As a result of this confirmed interest in the idea, it was decided that both the biennial International Epilepsy Meeting and the Regional Meetings that take place in alternate years should include such interactive Chapter Conventions. Martin Brodie, the Chair of the Task Force for Regional Organisations, and Cigdem Özkara, the Chair of the Task Force for Subregional and Interregional Organisations, were active in ensuring this possibility during the Regional Congresses held in 2004, which gave Chapters the opportunity to meet, exchange their points of view, make suggestions concerning the future of the League, and discuss new services that the ILAE could offer. One of these was the possibility of creating and managing websites for individual Chapters, something that is currently being developed. ILAE meetings remain one of the most appreciated contexts in which to meet colleagues from all over the world with whom to exchange experiences and information.

The effective collaboration of the Organising and Scientific Committees, the ILAE-IBE, the Portuguese League Against Epilepsy and all of its active participants – chairpersons, speakers and poster presenters – made the 25th International Epilepsy Congress (Lisbon, 12-16 October 2003) highly successful, despite the particular difficulties faced by the office of the International Director of Meetings (IDM), jointly created by the ILAE and IBE, in relocating it from Tunis to Lisbon in only seven months. What seemed to be the most widely appreciated innovations in the Congress format were the inclusion of a Presidential Symposium (on a subject underlining the complementary approach of the ILAE and IBE) and the rule that business meetings should never clash with scientific sessions.

The decision to move the Congress from Tunis (where it was originally planned to take place under the Presidency of Amel Mrabet) to Lisbon was due to the worsening international political situation and should not be seen as a sign of any weakening in the ILAE’s commitment to Africa and the developing world in general. This commitment is indeed reflected in the decision of the Executive Committee (EC) to use a substantial part of the expected surplus generated by the Congress to create a bursary system in order to promote the participation of delegates from developing countries, the funds of which made it possible to hold a Convention of African Delegates in Lisbon as an initial step in the establishment of an African Regional Commission. However, this only partially compensated for the frustration of being forced to transfer the Congress from Tunisia, which was a step backward in our mission towards the African continent. This led the present ILAE EC to reconsider the League’s organisation and propose a number of constitutional changes aimed at avoiding the risk that our policy may be conditioned by undue external constraints in the future.

One particularly interesting evolution of ILAE Congress activities has been the successful development of biennial Regional ILAE Congresses in the years in which there is no International Epilepsy Congress.
This aspect of the progressive “regionalisation” of the ILAE organisation has been greatly aided by the productive initiatives of the Regional Commissions (developed on the basis of the WHO model), which have been effectively coordinated by the second Vice-president Martin Brodie, Chairman of the Regional Task Force, actively seconded by the Subregional and Interregional Task Force chaired by Cigdem Özkara.

Over the last year, three successful Regional ILAE Meetings were held in Europe, Latin America and Asia/Oceania, as well as an interregional meeting (the Mediterranean Epilepsy Conference) in Marrakesh. Local and regional Congress organisers are to be praised for their ability to create events that mark major steps forward in the development of scientific and professional collaborations among the people working in the field of epilepsy in their respective areas.

The success of the ILAE Congresses once again demonstrates the appropriateness of the decision to create the IDM office, and underlines the fact that the ILAE should continue in this way while taking into account the lessons learned from our first four-year experience. To this end, when the previous IDM contract expired, its advantages and limitations were carefully evaluated and, on the basis of the results, a new contract was drawn up by the ILAE and IBE, and agreed with Richard Holmes, which is expected to be signed soon after the completion of its final revision.

Many other educational activities have taken place (inside and outside the Congresses) as a result of the work of the European Epilepsy Academy (EUREPA) chaired by Peter Wolf, which is now evolving into the ILAE educational branch. I would particularly like to mention the increasingly successful Residential Summer Courses held in Venice, each of which has involved the active participation of one or more ILAE Commissions depending on the topics covered.

Communications with our members has been a priority of the EC, which has taken particular care to promote our journal Epilepsia, our newsletter Epigraph, and the ILAE website.

Epilepsia continues to be the most authoritative journal in the field, whose impact factor is continuously increasing. This is due to the work of its Editor-in-Chief Robert Fisher, who has introduced timely and wise changes in its editorial management with the aim of improving its attractiveness without jeopardising its quality. In doing this, he has been ably assisted by Blackwell publishers, with whom he collaborated in developing a special program to make the journal accessible online to people living in economically disadvantaged countries. We were sorry to hear that Robert will not be available for a further mandate, and I would like to take this opportunity to express my own personal appreciation for his outstanding work as well as that of the ILAE.

The bi-annual Epigraph has now become familiar to all of the members of our 92 Chapters, who can find a brief but complete summary of the most important news in an elegant and attractive format. Editor Ley Sander and his assistant Juliet Solomon deserve our gratitude for running the newsletter so effectively, doing silently an enormous amount of work in such a professional and creative manner.

The ILAE website has greatly developed under Simon Shorvon’s editorship with Joseph Wall’s professional assistance. It currently provides a complete and continuous update of the ILAE structures and activities. The most recently published pages are devoted to Commissions, Chapters, Central Resources, the AED database and a Worldwide Resource Directory. A Central Research Website area is currently being prepared, which will include books, journal items, topic articles and slides from selected Conference
presentations, as well as a section dedicated to regional activities. As the ILAE’s Information Officer, Simon Shorvon is also responsible for its Epilepsy Information Center (EPI-info) at the Swiss Epilepsy Center in Zurich, the specific duties of which are to maintain a library of ILAE documents and videos, assist in providing data for updating the journal and book lists, provide e-mail responses to queries, and to maintain the ILAE’s historical archives. The impressive development of the information resources and related services now available to our members confirms the value of the decision to appoint a dedicated Information Officer, and I would like to thank Simon very much for fulfilling his role so effectively.

One of the major sources of the ILAE’s original contributions to the advancement of our discipline is the Commission system. All of the Resource and Problem-Oriented Commissions have been very productive in drawing up documents summarising the state-of-the-art in their specific fields and providing authoritative guidelines, a number of which have been endorsed by the EC and published in Epilepsia.

The Task Force on Classification chaired by Pete Engel has continued its review of the current classification, also taking into account the comments, suggestions and criticisms received from individuals or Commissions (a number of Commission workshops have been devoted to topics relevant to specific aspects of the classification of seizures and syndromes). Given the rapid development of epileptology, and the fact that the classification should reflect our current knowledge in the field, this work is by definition always “in progress” and the Task Force is happy to receive any new ideas or data.

I shall not spend long on the exciting progress of the Global Campaign Against Epilepsy (GCAE), which is described in detail elsewhere in this Annual Report. However, as its success bears witness to the value of collaborative action with the IBE and WHO, I would like to take this opportunity to stress the paramount importance that we continue to give to its synergy with our sister association, the IBE, with which we share the main objective of reducing the burden of epilepsy in all parts of the world. We therefore look forward to developing the GCAE and other joint initiatives further as a means of fostering our mutual mission. One of the tasks that the present EC committed itself to was to revise the ILAE Constitution and Bylaws, and some of its proposals were discussed and approved by the General Assembly in Lisbon. The most important changes were intended to improve the election process by limiting the number of representatives of individual Chapters and Regions sitting on the EC, and avoiding previous inconveniences due to the uncontrolled circulation of misleading information about the candidates. The ongoing elections have demonstrated that the application of these new rules has not been trouble free, and this is something that is being taken into account by the ad hoc Task Force chaired by ILAE Secretary Natalio Fejerman, which is now completing the revision of the constitution and bylaws to be submitted to the ILAE General Assembly in Paris. However, I am sure that the evaluation of the present election process (which will only be possible after its completion) will reveal a substantial improvement with respect to the past, and that this will be to the benefit of our association’s democratic development.

During the last year, the EC decided it was time to reconsider the setting of ongoing activities and
prospective initiatives in the framework of an updated Strategic Plan. The last one was first published 15 April 2000 and subsequently extended by the General Assembly on 17 May 2001 but, since then, many new initiatives have been started or planned and new inputs have been provided by the Chapter Conventions. Furthermore, as the significant amount of resources generated by our Congresses and Epilepsia have been very professionally managed by our administrative structure, we felt that the ILAE was in a position to support new strategic initiatives that may be considered of special interest. Accordingly, a Strategic Planning Meeting of EC members, and the Chairs of the Resource & Problem-Oriented and Regional Commissions (together with Harry Meinardi and Peter Wolf as invited guests, and Peter Berry, Donna Cunard and Delphine Sartiaux as Staff Members), was held in New Orleans on 4 December 2004. The interesting inputs and stimuli generated by the meeting can be found in the detailed report, but I would here like to make some comments about the points that particularly impressed me.

Despite the continuing commitment of the ILAE and IBE, the number of people with epilepsy who are not appropriately treated is still unacceptably high, and our strategy should be that of mapping the situation in different parts of the world/regions/countries and proposing appropriate measures that can be taken by governments and other relevant organisations (the World Bank, the WHO, UNESCO, the EU, etc.). A primary role in this should be played by the GCAE.

The present evolution towards the regionalisation of the ILAE should be pursued and reflected in virtually every point of the Strategic Plan, starting from the treatment gap. It should also have a clear impact on ILAE structures (e.g., central offices, EUREPA) and actions (e.g., GCAE).

The ILAE’s efforts to improve communications have been generally praised, particularly the introduction of Chapter Conventions, but even more could be done to promote the existing communication systems and implement new tools such as Congress-related videoconferences (“virtual Congresses”) and tele-medicine.

The importance of the ILAE’s educational activities is widely acknowledged. The model provided by EUREPA is generally appreciated, and we have also sought partnerships between the educational institutions of the developed and developing worlds. We should now aim at integrating the different educational approaches by means of remote education and mentorship/training programmes (including training the trainers and training the tutors).

I have very much appreciated the interest in research strategies that are not only capable of promoting,
facilitating and supporting international collaborative studies of genetics, epidemiology, etc., but also of
stimulating research training programmes in the different parts of the world (particularly in developing countries). I believe it is very important to help developing countries establish research projects that will enable them to confront their specific problems, and this should encourage the ILAE to dedicate some of its personnel and financial resources to proposing fellowship/grant programmes aimed at promoting epilepsy research to the relevant institutions (the World Bank, the WHO, UNESCO, the EU, governments, etc.)

Our present good relationships with the pharmaceutical industry should be pursued and developed with the aim of conditioning industrial policies (and not vice versa). I was particularly interested in the proposal to appoint a Task Force that would be responsible for reviewing ILAE-Industry relationships and advising the next EC about future approaches. Our relationships with governments and NGOs, and our partnership with the WHO, are of primary importance for the development of future ILAE strategies. The synergy with the IBE should continue to be the main axis of ILAE policy, and the GCAE should be further developed to promote even greater integration between the developing and developed worlds.

The fact that this message is longer than I originally planned is simply due to the enormous number of ILAE
activities that I have tried to describe.

This is my last message as ILAE President, and so I hope I will be forgiven if I take advantage of it to thank everyone who has helped me over the last four years: the EC members who have supported me with friendship and wisdom, and all of the other ILAE & Chapter officers and members. It has been a very exciting (although not always relaxing!) experience.

We are proud to be able to hand on to the next Executive Committee a highly active association that is looking forward to achieving further ambitious tasks. I would like to congratulate warmly President-Elect Peter Wolf and the newly elected officers. I wish them all every success and hope they will find their work as rewarding as I have.

Giuliano Avanzini
President