ILAE History: Post WWII
It can be concluded from the four issues of Epilepsia second series, Volume 3 (1945-1948) that the ILAE has Post-World War II branches immediately in Argentina, Great Britain, Holland, Scandinavia and the USA. No. 1 of the third volume, second series appeared in December 1945. In a note "The League and Epilepsia" the acting editor (Lennox) writes:
"As the blackness of war gives way, we are thankful that we can again join efforts with friends of a common hope and purpose who are separated from us by nothing more substantial than salt water. Dr Tylor Fox and other members of the British branch of the International League are meeting for the first time in several years. Dr Schou, the editor of Epilepsia, does not feel physically able to resume his active duties and asks that the acting editor continue to function for the present. The epilepsy portion of the Colony at Filadelfia in Denmark is in charge of Dr Stubbe Teglbjaerg" (formerly in charge of Dr Schou).
No. 2 of the same volume appears in December 1946. In this issue, in his capacity as president of ILAE, William G. Lennox announces that the constituent chapters of the ILAE are beginning again to function after the paralysing experiences of the war.
"...Through the financial support of the American Epilepsy League it has been possible to supply members outside of America with copies of Epilepsia without charge.
...The business meeting of the International League is to be held December 13, 1946."
[NB: Together with the Association for Research in Nervous and Mental Disease (ARNMD).]
"This will be the first meeting since the one in Copenhagen in 1939. Dr Grey Walter and Dr B.Ch. Ledeboer will represent the British and Dutch branches respectively (the express mentioning of the representatives of two chapters may signify that apart from these two and the American chapter no others were present, and a quorum for decisions therefore absent. However, it is impossible to verify this assumption)."
In Volume 3 under the heading INTERNATIONAL LEAGUE AGAINST EPILEPSY presumably the editor/president writes19:
"Probably the most significant event in the history of the ILAE was the scientific session held in New York in December of 1946. This session was held jointly with the ARNMD.
...The programme included investigations in problems of history, of aetiology, and of experimental studies dealing with transmission of nerve impulses and of the electro-physico reactions of the brain.
...A considerable section was devoted to electroencephalographic studies, another to the results of clinical use of newer drugs; namely, diphenyleneimide; methylphenylethylhydantoin (mesantoin); trimethyloxazoladinedione (tridione), and dimethethyloxazoladione."
A business meeting was held on December 13 and the 1946-1949 Executive Committee was elected (appendix I).
The frontispiece of Volume 3, No. 3 (1947) shows a great expansion of the list of editorial collaborators. This issue has reports from chapters, a bibliography of articles on epilepsy and an article on "The Higher Education of Epileptics".
In Volume 3, No. 4 (1948) Dr W.G. Lennox writes:
"The present number of Epilepsia is the last to be issued before the Paris meeting. It is an invitation and an appeal to physicians in all countries to unite in greater efforts in behalf of the epileptic."
About the meeting itself he writes:
"Hopes are now centred on the coming meeting of the ILAE, which will be held in Paris in September 1949, at the time of the International Neurological Congress. This will be the first full-fledged meeting in nine years -nine sad and broken years. The League must gather its strength and continue its campaign in favour of the epileptic.
...It is hoped also that new national chapters may be formed to augment those already active in Great Britain, Scandinavia, Holland, Argentina and America."
[NB: This message is the only piece in the issue which is printed both in English and in French.]
According to a report in Epilepsia20:
"On September 8, 1949 the business meeting of the ILAE was held in the School of Medicine of the University of Paris, at the time of the International Neurological Congress. At this meeting, many reasons for encouragement were evident. There was much interest in an aggressive policy for the League and much encouragement in the reorganization of the French branch. (Since the meeting, word also came of the organization of a Brazilian Epilepsy League which no doubt was to be welcomed into the membership of the international organization). Members were agreed that there should be a secretary-general of the League stationed in Europe who by writing and visiting would help to stimulate the activities of members and encourage the formation of branches in Switzerland, Belgium, Spain and Italy. However, in order for any such aggressive policy to function, there had to be a source of income.
The following matters of business were presented at the business meeting and voted on favourably:
- Acceptance of the applications of the French and Argentine chapters for membership in the International League.
- Request the officers to explore the feasibility or desirability of some form of international incorporation or of joining an international science or health incorporation such as C.C.I.C.M.S. or WHO.
- Each chapter should remit to the International League one-third of the sum collected from the dues of its members. This is for the expenses of the League or (if necessary) for the printing of Epilepsia.
- That the secretary send a note of thanks and appreciation to the American Epilepsy League for its past contribution to the International League in paying for the printing of Epilepsia. Cost of the most recent number -No. 4 of Volume 3- was $ 1,900.00.
Members of the ILAE participated in the scientific programmes of the International Society of Electroencephalography and the International Neurological Congress. In these two meetings, there were 27 papers that dealt with epilepsy. "The Paris papers presented a striking demonstration of the tremendous increase in knowledge and interest in epilepsy, especially through the domains of electroencephalography and drug therapy."
Brief reports were received of the activities of chapters in America, England, France, Holland and Scandinavia at the business meeting of the ILAE.
The Executive Committee for 1949-1953 was also elected (appendix I). Jerome K. Merlis (USA) is appointed next to W.G. Lennox as assistant-editor. He will play an important role in the closing of the second series of Epilepsia and the start of the third series.
Epilepsia, third series
Volume 1 of the third series of Epilepsia was published in November 1952. The editing of this volume was undertaken by the Publications Committee of the American League Against Epilepsy under the chairmanship of Jerome K. Merlis. In this first volume, page 98, the secretary-general of the ILAE, Ledeboer, writes an open letter to the chapters:
"I am grateful for the opportunity of getting into touch with you all again through this first number of Epilepsia in its new form. May I wish Epilepsia a happy re-launching and a successful future?"
The editors announced:
"With this issue, Epilepsia inaugurates a new editorial policy.
...The great demand for publication space is forcing increasing restrictions on length and content of manuscripts. Accent is placed on reporting new data, on reducing introductions, bibliographic citations, and discussions. This stress on 'facts' is a not unmixed blessing. We do not decry the continuing need for accumulating unbiased data but facts of themselves advance our sciences not at all. It is the thinking which uses the facts, which integrates them and synthesizes broad concepts, which makes for progress in our understanding. The restriction of space in which to express our thoughts in print sometimes seems to be restricting the thoughts themselves. As we work in narrower and narrower channels, our vision seems to shrink; sometimes to become hemianopic, sometimes to become 'tunnel vision'.
...[therefore] Epilepsia would like to offer its pages to people who wish to express their considered thoughts. It would like to offer an opportunity to people who wish to critically examine what has been done in the past, to point out to us what new facts are required, who can present new ideas based on facts already in hand.
...It is hoped that the editorial board for all succeeding volumes will consist of representatives from each of the national branches."
Dr Ledeboer writes in the same issue21:
"As perhaps not everyone knows, it was decided at the International Neurological Congress held in Paris in 1949 to appoint a secretary-general who should encourage the forming of new branches in various countries. National branches would pay one-third of their annual income toward the upkeep of the secretary-general. Not much has come of this and only few branches have sent contributions. Some time ago we have sent questionnaires to all existing branches as well as to personalities interested in the work and perhaps willing to form branches in their own country. New answers are coming in.
...The next meeting of the International League will be held in conjunction with the fifth International Neurological Congress, which will be held in Lisbon, September 7-12, 1953.
...At this moment (July 1952) the ILAE has branches in the following countries: USA, Argentina, Belgium, Brazil, Canada, France, Great Britain, Holland, Israel, Japan and Scandinavia."
[NB. However, this list is different from the one presented after the General Assembly 1953: vide infra.]
In the second volume, third series, ILAE secretary-general Dr Ledeboer reports22:
"The meetings of the International League were held in the same place as those of the International Neurological Congress, in the new Hospital of Lisbon, a huge building, which houses the medical faculty of the University of Lisbon."
There were two meetings of the ILAE: the first day the Scientific Meeting, and the second day the Business Meeting. According to the secretary-general:
"The scientific meeting may be considered to have been a successful contribution of the International League to the elucidation of a most important problem. The subject of this meeting was "Temporal Epilepsies"23, a critical study by Henri Gastaut, discussed by Murray Falconer, John F. Fulton, B. Fuster, Frederic A. Gibbs, J. Gulliaume together with G. Mazars and Y. Mazars, Herbert H. Jasper, Birger Kaada, Margaret Lennox, William Lennox, Paul D. MacLean, O. Magnus, R. Masland, K.W.E. Paine, G. Pampiglione, Wilder Penfield, Robert Schwab, A. Subirana, and a final summing up by Jerome K. Merlis.
...At the Business Meeting the Constitution of the League was ratified24, which is most important for the activities of the League in future (appendix III).
[NB: This is the third constitution of the ILAE and apparently formulated independently from the previous two.]
...A new Executive Committee 1953-1957 was elected (appendix I).
The continuation of the publication of Epilepsia, whose editor Dr J.K. Merlis is now a member of the Executive Committee, was heartily welcomed.
...Furthermore, the necessity of cooperation with the World Health Organization and UNESCO was discussed. The new president will shortly appoint a special committee whose task it will be to prepare this cooperation. Other special committees will also be designated.
...It was decided to hold the next meeting of the International League in conjunction with that of the International Neurological Congress at Brussels in 1957.
...These meetings of the League have taught us a few things, the most important of which are that the League has proved its right to existence and that interest in the fight against epilepsy is growing all over the world. It is the League's vocation to conduct this fight."
In the same issue Dr Ledeboer25 presents the first official report on the activities of the League as a whole, which has been made since its foundation. In this lengthy report the following points may be highlighted. Ledeboer writes:
"When the organizations, whose applications for membership were received by the secretariat-general, will have been admitted, the League will have ten official branches. This number is quite insufficient, but a good start has been made. The names of the branches are: Argentina, Brazil, Chile, France, Great Britain, Holland, Japan, Peru, Scandinavia, USA and Canada. We are in touch with people in several countries in order to found branches. Contacts have been made with: Australia, Belgium, Cuba, Finland, India, Israel, Italy, Malaya, Spain, Yugoslavia, South Africa and Switzerland.
...At the latest meeting of the League in Paris in 1949 it was agreed that the branches should pay one-third of their national income to the secretariat-general. Under these conditions I accepted my appointment as secretary-general. What has come of this? Great Britain and Holland have met their obligations every year. USA and Canada, Scandinavia and Brazil have once made a contribution. However, America has helped enormously by issuing Epilepsia, for which it deserves homage. If, on the other hand, the members will now have to pay for Epilepsia, I have no doubt but this country will also be prepared to meet the obligation which it has undertaken.
...We see the task of the League in the first place as a stimulating one for the foundation of branches in all countries and the necessary enlightenment for that purpose. On the other hand we think it necessary and desirable to keep in contact with existing international organizations working in the field of public health, such as World Health Organization and UNESCO.
...As further objectives of the League I would mention: the making or adoption of a film or various films of the League, which clearly indicate the aims of the League.
...In this connection it will once more be necessary to distinguish propaganda among physicians (this film should have a more scientific character), and propaganda among the general public. In the latter case the social side of the fight against epilepsy should come to the fore.
...Furthermore, I would advocate that a permanent exhibition stand for the League be built, which could be used for propaganda purposes in all countries.
...It is likewise most important to have much more propaganda material in various languages, but this takes money, which we have not got yet.
...In the various countries three kinds of organizations have developed, namely:
- organizations of physicians,
- mixed organizations, and
- organizations of laymen who are interested in the problems concerning epilepsy.
Today it should be decided whether the League should restrict itself to the first group or whether it should be the uniting body for all the workers in the field of the fight against epilepsy. I can tell you that personally I am an advocate of the latter."
And about the journal of the League, Epilepsia:
"...Personally I would prefer that inserting original articles be not the main thing. These articles could also be published in all other periodicals appearing all over the world and they would have many more readers then. It would be very advisable if the unique position of the journal Epilepsia for all epileptologists could return. The secretariat-general will be pleased to lend as much help as possible in this respect. In the second place, Epilepsia should indeed be more evidently the journal of the International League and its branches. Therefore it should contain more reports from these branches."
The next issue of Epilepsia, Volume 3 of the third series, was published in November 1954. Dr Ledeboer26 repeated some important points in this issue that the ILAE was trying to achieve:
This was made by sending the Dutch film on epilepsy: "A life at stake" abroad, where it was shown to doctors and laymen.
An application for membership of the Council for International Organizations of Medical Sciences (CIOMS) was made in the beginning of this year. During the meetings of the Executive Committee of CIOMS, which were held on the 12th and 13th March, the International League was accepted as a member. This decision must be ratified by the third General Assembly of CIOMS, which will take place in 1955.
There has been a delay in the translation and printing of the constitution of the League on account of both lack of time and money. It is hoped that these hindrances will soon be overcome.
New branches and contacts
A new branch was formed in Cuba, the "Liga Cubana contra la Epilepsia".
"The secretariat-general encouraged in many respects the foundation of an organization for the fight against epilepsy in Belgium. In March 1954 the "Ligue Nationale Belge contre l'Epilepsie" was officially created.
From Israel we received word that the Association of Neurologists and Psychiatrists had taken the initiative to create a group with the purpose of centralizing and organizing the fight against epilepsy in that country. This medical organization will form the core of the Israel branch of the International League which we expect to be established before long.
In Spain the medical journal "Revista de Neurologia Clinica" regularly invites neurologists to communicate with the director of this journal who is trying to found a Spanish branch of the League.
In the course of this month an EEG meeting was held in Austria, where one of the Austrian individual members of the League would try and create a branch of the League.
Italy has a small group of enthusiastic individual members, who are much interested in the creation of a national branch.
With several other countries, far and near, initial contacts have been made. We hope these will develop into regular relations and ultimately into branches all over the world."
Volume 4 of Epilepsia, third series, was printed in November 1955. According to the then president of the ILAE, Dr Earl Walker27 (this time no report from the secretary-general!):
"The ILAE has been given a very favourable spot in the programme for the 1957 International Neurological Congress. It has been assigned the morning of the first day of the congress for its symposium which will probably be on certain aspects of temporal lobe epilepsy. This will enable the League to hold a meeting without competition from any other society, and should promote considerable interest in its activities. In the early part of 1956 the ILAE will inaugurate a newsletter to be sent to all branches. This is designed to keep the members throughout the world abreast with the clinical and research advances in epileptology. Events of interest, and announcements of meetings will be published.
The past year has advanced the cause of the epileptic; may the future ones be even more successful."
[NB: As far as known to the reviewer such a newsletter did not materialize.]
The end of the third series of Epilepsia
No issues of Epilepsia were published from 1955 to 1959. The absence of an official journal is the reason that little information is available about the 1957 meeting of the ILAE in Brussels. In the Revue Neurologique 1957, p. 232-236 there is a summary in French of the scientific contributions. This meeting, which the rapporteur calls the 8th meeting of ILAE, was part of the sixth International Neurology Congress or, as the rapporteur expresses it, the first Congress of Neurological Sciences. There is, however, no account of the election of the 1957-1961 Executive Committee (appendix I). A collaborator of the former secretary-general reported the composition of the Executive in that period.
Epilepsia, fourth series
Why the publishing of the journal was interrupted for four years may be deduced from the "Historical Introduction"28 to the fourth series, Volume 1, which says:
"Epilepsia, the official organ of the ILAE, has gone through several metamorphoses. The latest, which has brought it from an annual publication to a quarterly journal, was the result of a constellation of factors. For some years it had been apparent that the growing ILAE needed a medium of communication which was more flexible in time and space than the annual volume. Reports of society meetings were out of date long before they appeared in print. From the standpoint of circulation, an annual publication left much to be desired. Both advertising and scientific papers shunned a medium which was apt to be forgotten between issues and which was almost a year behind current literature. For these reasons, the ILAE at its meeting in Brussels in July 1957 resolved that the status of Epilepsia should be carefully appraised and appointed a committee of three -the then president of the League, the president-elect and the editor of Epilepsia- to survey the matter and specifically gave this committee power to abolish, to reorganize as a quarterly or to modify the publication so as to make it meet the growing needs of the League. With this directive the committee surveyed the problem. At once it became apparent that although there were numerous publications in the field of neurology, almost all had a year's backlog of unpublished manuscripts, and that their editors would welcome an additional medium to lessen this problem. But most publishers, both in Europe and the United States, looked upon epilepsy as a narrow field without a wide appeal even to neurologists. It seemed that the committee was at an impasse, and that Epilepsia should be abandoned temporarily. At this point the management of Elsevier Publishing Company expressed an interest in undertaking the publication of a quarterly journal in this field. Negotiations proceeded rapidly and successfully so that within a few months plans were formulated for a renovated Epilepsia."
According to this situation, the members of the committee decided to invite a very experienced and skilful person to occupy the position of the editor-in-chief. This was Sir Francis Walshe, the former editor-in-chief of "Brain". It was deemed necessary to support him with editors in both the Old and New World.
"...Young, energetic and enthusiastic leaders as Professor Henri Gastaut and Gilbert Glaser and Dr Albert Lorentz de Haas seemed ideally suited for the posts (of editor) and all accepted. The committee, assigned by the ILAE to reorganize Epilepsia, considered that its duty was done, and that the further development of the journal, its policies, editorial board, etc., should be left to the editors."
The first volume of the fourth series was published in Amsterdam in 1959. The editors let it be known that they aimed Epilepsia at as wide a generality of understanding of the many and complex problems involved in epileptic manifestations as can be achieved, and they hoped to avoid a narrow or too technological outlook upon them. They desired to provide a journal in which will be found informed, original and critical studies covering the fields of aetiology, pathogenesis, course, manifestations, investigations of every relevant kind, and treatment both medical and surgical. They hoped, also, to encourage much-needed studies in the anatomy of the epileptic brain: studies that are so formidable and time exacting that too few students have the courage to undertake them, necessary as they are to clear ideas upon focal epilepsy in its many forms. Finally, they hoped to provide a journal for all who, from any aspect, or by any relevant method of study, seek to advance the study of epileptic manifestations: whether they work as clinicians, surgeons, electrophysiologists, biochemists or physical chemists. They were anxious to avoid a narrow specialization, and to keep the subject in close touch with internal medicine in order to provide wisely oriented thought and work in the field of epilepsy. They would not encourage the isolation of epilepsy from the body of neurology or from that of general medicine. It is to the sympathetic collaboration of the contributors and readers that they had to look, if these high aims were to be realized.
On the back of Epilepsia there was a call for contributions:
- original papers concerning epilepsy in one or more of its aspects (clinical, experimental, social, etc.),
- proceedings and reports of the ILAE and its branches,
- bibliographical notes and book reviews,
- notes, recent and forthcoming events.
Papers will preferably be published in English.
In the first volume all papers were in English, in the second volume there was one paper in French from Italy(!). In the third volume there is no French paper but one Tagungsbericht (congress report) of the German branch of the ILAE in German. In the sixth volume even the report on the Annual Meeting of the German section of the ILAE appeared in English. It is not clear whether Volume 1, fourth series was published in several issues or as a whole. The first 116 pages are marked Vol. 1 (1959). Then there is a report of the participants at the Colloquium at Marseilles, France, 15-19 October, 1956 by S. Dongier, and here, on page 117, the volume starts to be marked Vol. 1 (1959/60) which continues to be the case until the last page (611). It is, however, quite likely that the fourth series appeared as annual volumes with four quarterly issues from 1959 until 1978, when it was increased to six bimonthly issues, and then in 1994 it was again increased, to 12 monthly issues. In 1974 the publisher changed from Elsevier, Amsterdam to Raven Press, New York, and from then on the indication Fourth Series is removed, however, the first volume published by Raven continues the sequence as number 15.
Thus Epilepsia, Volume 2, fourth series appeared in 1961. It opens with an obituary for William Gordon Lennox by Frederic A. Gibbs. Besides the scientific articles concerning different subjects of epilepsy, it contained the material of two symposia. The first one was a Symposium on Basic Mechanisms of the Epileptic Discharge, under the chairmanship of Dr Arthur A. Ward (editor- in-chief of Epilepsia 1973-1986), held at the Annual Meeting of the American Electroencephalographic Society on Cape Cod, Mass. (USA), June 11, 1960. The second one was a Symposium on Post-Traumatic Epilepsy, under the chairmanship of Wilder Penfield, presented at a Meeting of the American Epilepsy Society, New York City, N.Y. (USA), December 11, 1958. In the same issue there were some announcements and among them an APPEAL to the national branches of the ILAE and their representatives29:
"At the last General Meeting of the League a new secretary-general (Henri Gastaut) was appointed. Unfortunately, in connection with the subsequent death of his predecessor (B.Ch. Ledeboer), the archives were lost completely. The secretaries of each organization are therefore requested to supply the present secretary-general with information about the structure and running of their own organizations, together with the names of the members of the board, the number of ordinary members, and the scientific and social activities."
[NB: Keeping archives, unfortunately, has been a rather neglected issue in the ILAE. It is only in the seventies that the archives were kept more systematically. Presently plans are made to place the archives in a museum for the history of epileptology.]
According to that announcement, the Ninth Meeting of the ILAE had to be held in Rome on September 10th, 1961. On page 297 of Volume 2, fourth series the editors announce that the editor-in-chief, Sir Francis Walshe, had stepped down in accordance with his intentions from the start. He was apparently not replaced.
In Volume 3 (1962) information is provided about the 1961 congress of the ILAE. Furthermore, various subjects concerning different aspects of epilepsy were presented. It contained among others the material of a Symposium on Reflex Mechanisms in the Genesis of Epilepsy, sponsored by the Institute of Physiology, Czechoslovak Academy of Sciences, Prague (Czecho-Slovakia), held in Prague and Liblice, September 26-29, 1960.
The dawn of the International Bureau for Epilepsy
During the 1961 meeting of the ILAE in Rome there were the usual elections and the 1961-1965 Executive Committee was formed (appendix I). At the meeting there was criticism from various parts as to the fact that too little attention was paid to the social and behavioural aspects of epilepsy. A summary of what happened was reported by George Burden30, general secretary of the British Epilepsy Association, titled "Social Aspects of Epilepsy". According to this report:
"No chronic medical condition is more affected by the social conditions of the patient than epilepsy. From its inception the ILAE has provided a forum for enquiry into the aetiology, investigation in the drug therapy and other forms of treatment, and has made an incalculable contribution to the improvement in the medical status of the epileptic patient. In recent years, the need has become apparent for a similar advance in the social understanding of epilepsy and an assessment of the measures which must be taken to ensure that the epileptic patient can receive the fullest benefit of improved medical knowledge and treatment, and so claim his or her rightful place in the community in which he should be living. Evidence of this need is the growth and development of lay associations for the welfare of the epileptic. The first recorded societies for this purpose were in the United States as far back as 1897 but the real impetus to the forming of efficient and well organized groups can be traced to the work of Lennox in his clinic at Boston, USA, and Tylor Fox in his colony at Lingfield, Surrey, Great Britain.
September 1961 saw the Ninth Meeting of the ILAE in Rome, and through the kindness of Prof Gozzano and Dr Vizioli of the University of Rome, the British Epilepsy Association was permitted to hold a conference on The Role of the Lay Organization in the Treatment of Epilepsy, under the chairmanship of Dr Romanes Davidson, medical director of the Bridge of Weir colony in Scotland. This meeting was addressed by Dr A.M. Lorentz de Haas, medical director of the Epilepsy Centre Meer en Bosch (since 1968 Instituut voor Epilepsiebestrijding) at Heemstede and Haarlem, president of the Netherlands branch of the ILAE; Mrs Ellen Grass, president of the American Epilepsy Federation, and Miss Irene Gairdner, honorary secretary of the British Epilepsy Association. Dr Karl-Axel Melin of Sweden, Dr Mosovich of Argentina and Mrs Kilgour, the honorary secretary of the Scottish Epilepsy Association, then gave brief descriptions of the activities in their countries."
"At the end of the meeting Dr Mosovich asked to be allowed to speak again and proposed that an international bureau should be set up to:
- canalize all possible information about associations to help people with epilepsy and distribute this by means of a newsletter at a certain fixed period;
- make information available on how to organize a laymen's league and how this should be financed;
- create an international film library about epilepsy;
- the emblem of this association should be the candle already adopted by the British Epilepsy Association and by associations in Australia, Canada, Sweden and New Zealand.
In a meeting at Rome held jointly by members of the Board of the ILAE and representatives of the British Epilepsy Association, this was also a point of discussion. Two urgent questions had to be answered. Firstly, from what source and by what means could the necessary finance be raised to make this international bureau work. The International League had offered an initial grant, but if the international bureau was to play the above-mentioned part, it would be necessary to secure an income for three or four years to pay for a secretary and to meet travelling, publications and basic office costs. Secondly, the gathering of information and knowledge is a two way process. Before it is possible to disperse information it must first be received. In this regard it is also necessary to be clear about what information should be collected, and suggestions about this would be welcome. Some examples of information to be collected were as follows:
What facilities exist for the education of children with epilepsy; what are the indications for the exclusion of children from ordinary schools; what provision should be made for special establishments including residential accommodation for children with epilepsy?
What type of employment is thought suitable for people suffering from epilepsy; is it necessary that the epileptic should be obliged to accept lower grade employment; what steps can be taken to ensure that employers are protected against undue risk or can be informed about such risks as there are when they employ an epileptic? The answers to these questions will no doubt vary to a great extent owing to the diversity of social laws and provisions in the different countries.
In many countries there are difficulties in connection with the epileptics entering and wishing to take up residence. What are the indications for regulations about immigration? With the introduction of joint commercial arrangements such as the Common Market together with the ease of modern travel, what steps can be taken to ensure that the epileptic can move about as freely as any other individual?
(4) Discriminatory legislation
To what extent does this exist and what is the experience of other communities in repealing such legislation?"
Thus it was decided to call into existence a separate association that would closely cooperate with the League. This society was called the International Bureau for Epilepsy (IBE). Whereas ILAE membership in those days was exclusively open to primarily national medical organizations devoted to the problems of epilepsy, the International Bureau for Epilepsy focused both on lay organizations, clinics and individuals.
Volume 4 of the fourth series has no entry regarding ILAE activities. On page 94 there is an announcement in German that on September 5, 1962 the Michael Stiftung was founded. The announcement informed the readership that German authors could compete for a newly established Michael Preis. (In later years competition was open for authors from any nationality.) Although this was a local and independent initiative it was negotiated with the ILAE Executive that the award would be bestowed during the award ceremony of the ILAE congresses.
Volume 5 of Epilepsia appeared in 1964, and opened with the text of the first of the William Lennox memorial lectures of the American Epilepsy Society, delivered by H.H. Jasper. In this volume the first proposal by the ILAE of an International Classification of Epileptic Seizures was also published (vide section on Activities). In Volume 5 various aspects of epilepsy were discussed along with an announcement31 that:
"The International League Against Epilepsy takes pleasure in announcing its Quadrennial Meeting in Vienna on September 5th, 1965. Subject is the discussion of a proposed terminology and classification of the epilepsies, to be formulated by an international commission under the auspices of the ILAE, the World Federation of Neurology and the International Federation of EEG Societies. The printed text of the proposed classification will be sent two months in advance to all registered members of the International Congresses of Neurology and of Electroencephalography. All members of both congresses are cordially invited to take an active part in this discussion."
[NB: No copy of such a printed text dated 1965 has been retrieved.]
Volume 6 (1965) contained an interesting ANNOUNCEMENT32, which probably rests on the fact that the members of the American chapter of the ILAE have the subscription to Epilepsia included in their membership and thus regard the journal as much a part of their own chapter as of the ILAE. The announcement came from the American Epilepsy Society and the Epilepsy Association of America, and had to do with the exertion of some pressure to unite the different lay organization:
"At the last Annual Meeting of the American Epilepsy Society, held on
3 December, 1964 in New York City, the following resolutions were adopted by the Society:
- Be it resolved that the American Epilepsy Society reaffirm its action of a year ago that it would endorse the merger of all or any three of the four lay organizations, and now lend its full support to the newly formed Epilepsy Association of America.
- Be it further resolved that notice of the action of this society together with a copy of the appendix to this report, be forwarded to all of its members who are also members of the Medical Advisory Board of the Epilepsy Foundation.
- Be it further resolved that, in the light of the facts now evident, the society suggests that the members of the American Epilepsy Society serving as members of the Medical Advisory Board of the Epilepsy Foundation tender their resignations and no longer lend their prestige or support to this group.
- Be it further resolved that at such time that the Epilepsy Foundation or any other group merges with the Epilepsy Association of America that it thereby receive the support of the American Epilepsy Society.
- Be it further resolved that these resolutions be submitted for publication in the new section of Neurology, in Epilepsia and in other appropriate media."
The continuous interaction between the professional and lay people concerned about epilepsy is also reflected by a report of A.M. Lorentz de Haas, one of the editors, who was also the president of the Dutch branch of the ILAE. It is interesting because it touched upon several issues which throughout have been a matter of debate for the ILAE, i.e., whether lay and professional people interested in epilepsy should be in the same or separate organizations and the need for special centres for epilepsy. He gave an account of the organization of the Dutch branch of the ILAE, which was open to medical, non-medical and corporate members. Furthermore, he provided a detailed report of the institute in the Netherlands of which he was the medical director and which was the largest centre in the world caring exclusively for patients with epilepsy.
In issue No. 1 of Volume 7 of Epilepsia the then president of the ILAE, Francis L. McNaughton, presented his report33 at the General Assembly in Vienna, 9th September, 1965:
"In opening this quadrennial General Assembly of the ILAE, I wish to welcome by name a number of representatives of the National branches of the League who are gathered here. First of all I wish to name our host, Dr Asperger of the newly formed Austrian branch. Others who should be mentioned by name are Dr Magnus (Netherlands), Drs Aldren Turner, Whitty and Simpson (Great Britain), Dr Bay (West Germany), Drs Ackerman and Bitter (Brazil), Dr Delmar (Argentina), Dr Asenjo (Uruguay), Dr Contreras (Chile), Dr Alfandary (Israel), Dr Subirana (Spain), Dr Wada (Japan), and Drs Walker, Masland and Caveness (United States). A particular welcome should be given to Prof Pierre Saradjichvili, Director of the Neurological Institute, Tbilisi (USSR), who is specially concerned with the problem of epilepsy in the Soviet Union. We hope that his presence here will lead to a closer relationship between the neurologists of the USSR and the International League. We also welcome Boris Lebedev, who is attending the Vienna meeting as a special representative of the World Health Organization."
Next he pointed out how in different countries the national chapters may have different roles. In his view many of the branches consist mainly of neurologists, and function as a professional society providing scientific meetings, education and advice to the government; in some countries even offering diagnostic, therapeutic and social services including sheltered workshops. Furthermore, he mentioned the Colloques de Marseilles, jointly sponsored by the ILAE, the World Federation of Neurology and the International Federation of Societies for EEG and Clinical Neurophysiology, and the intention of the International Bureau, first conceived as the social arm of the ILAE, to become an independent organization in 1966. The president also adopted a suggestion by Dr Magnus from the Netherlands "that ILAE and all branches would start to use the emblem developed for the Dutch Federatie voor Epilepsie-bestrijding (Dutch branch of ILAE) which has the form of a stylized wave-and-spike." He announced that the ILAE had decided to resign as member of the CIOMS (vide p. 23) as it offered the League no advantages. He also declared that the constitution last ratified in 1953 in Lisbon was in need of change. Last but not least, he expressed the need to strengthen the connections between the national branches by a more personal Newsletter as a regular supplement to the scientific journal Epilepsia.
[NB: After a long lag-time ILAE started in 1991 to make use of IE News, the newsletter of IBE, until in 1994 the first issue of Epigraph appeared, finally fulfilling the wish of Francis L. McNaughton and previous presidents.]
In Vienna the 1965-1969 Executive Committee was elected (appendix I). Lorentz de Haas, the new president, who also continued to be managing editor of Epilepsia, however, died in 1967 of melanoma. J.K. Merlis34 temporarily took his place as president, while the secretary-general, O. Magnus, took over the managing editorship of Epilepsia.
The European Symposia
In Volume 8 two announcements of the IBE appeared: the first35 about its official establishment at a meeting in Wiesbaden in 1966, and the second36 of an European Institute to be held in 2-4 October 1967 in Hôpital de la Salpêtrière in Paris. This was apparently the first symposium organized by the IBE together with a national ILAE chapter. Such meetings, later named European Symposia, were held during the years that there was no congress of the ILAE. Both the European symposia and the ILAE congresses were de facto joint meetings; that is why, when this was also established de jure, this was reflected in the number allocated to the joint congress. An overview of the congresses and symposia is presented in appendix V. October 4 was also the date that the then president of the ILAE, Dr A.M. Lorentz de Haas, who had been scheduled to speak at the Paris meeting, died. Otto Magnus wrote his obituary in the same volume.
New York 1969
Volume 10 announced the 11th congress of the ILAE to be held in New York in 1969. The supplement provided both the programme and the complete proposal for a Clinical and Electroencephalographic Classification of Epileptic Seizures. Two of the four issues of this volume are called special and are proceedings of symposia. In later years these proceedings would have appeared as supplements. In the third issue of this volume there is also a call for new members. The 1969-1973 Executive Committee is presented after the 11th congress (appendix I).
A full report on the meeting of the General Assembly in 1969, of the adopted classification of seizures and proposed classification of the epilepsies can be found in Volume 11, 1970, p.95-119. This is the last report of an ILAE General Assembly published in Epilepsia. Thereafter only the announcement of the congresses are to be found. There is a brief report37 about the first Epilepsy Film Festival, organized by the IBE and its Belgian branch, which was held in Brussels on November 29, 1969. There is also evidence of the close collaboration with the IBE regarding the European Symposia on Epilepsy. Minutes of the meeting of the ILAE Executive on the occasion of the 3rd European Symposium in Denmark have been published38.
In Volume 12 the announcement section reveals a new trend: ILAE involvement in regional neurology meetings. It is announced that at the forthcoming 3rd Panamerican Congress of Neurology in Brazil (1971) there will be an International Meeting on the Epilepsies under the auspices of the ILAE39. There is also an announcement of a monolingual multichapter meeting, i.e., of the German, Austrian and Swiss branches of the ILAE40. Such regional meetings of chapters with a factor in common had been organized in the past, e.g., of the Scandinavian countries, and were to become more prevalent as more people got interested in epilepsy and were not always able to attend the international meetings. This point will be revisited in the section about activities of the ILAE.
The 12th International Congress on Epilepsy and its scientific programme41 to be held in Barcelona was announced in June 1973. In subsequent issues one will look in vain for a report of the General Assembly and the election of new officers. The early resigning of the secretary-general Otto Magnus, who disagreed with the way Epilepsia changed publisher from Elsevier to Raven Press, and also in other respects differed of opinion about the policies of the 1969-1973 Executive Committee, can not be traced in Epilepsia. Interestingly, the Barcelona meeting was probably the first time in the history of the ILAE that the slate of officers proposed by the Executive Committee was not completely accepted. Instead of a German vice-president proposed by the Executive, the floor advanced, Dieter Janz, also from Germany. The ballot was in favour of the candidate from the floor. Out-going president Henri Gastaut considered this an affront and a vote of non-confidence, which unfortunately hurt the association of the ILAE with one of its great leaders for some time. However, the new 1973-1977 Executive Committee (appendix I) did not suffer from its difficult delivery.
Although no report of the General Assembly is published, at least the names of the new Executive are incorporated in the colophon of volumes 15 (1974), 16 and 17 of Epilepsia. However, the policy of presenting the members of the Executive Committee in the journal of the ILAE is abandoned again in the next volumes, 18 (1977) through 25 (1984). The Executive returns in a slightly different form in volumes 26 (1985) and 27 (1986) as the "advisory board" of Epilepsia. In 1987 they disappear again (volume 28) to resurface as the ILAE board, in the 4th issue of volume 29 through volume 35 (1994). From volume 36 onwards they are identified as ILAE Executive Committee and Editorial Advisory Board. By that time, however, the ILAE introduced a new vehicle for communication, "Epigraph", which is sent to all the members of the chapters to inform them of the business of the ILAE.
Epilepsy International introitus
In 1973 both the ILAE and the IBE adopted a new constitution (appendix III) interlocking the Executive Committees of both organizations. The president and secretary-general of each organization is now also ex officio member of the other organization. The concept of Epilepsy International is launched December 1974 in the 39th issue of the IBE Newsletter. A declaration of intent agreed upon by both Executives is promulgated. It has seven paragraphs, the first reading: "That the two organizations while retaining their separate identity, aims and objectives, should work together under the name of Epilepsy International."
In March 1975 the 40th Newsletter is named Epilepsy International Newsletter and decorated with the joint logos of the IBE and the ILAE.
In 1977 the next congress of the ILAE is announced42 as the XIII Congress of the ILAE and the IX Symposium of the IBE. Ellen Grass and George Burden, respectively president and secretary-general of the IBE since its founding, stepped back. The two new Executives of the 1977-1981 ILAE (appendix I) and the IBE were to implement Epilepsy International and to explore the possibility of a merger. Epilepsy International was constructed as the agent of the ILAE and the IBE and governed by a Board of Directors.
The presidents of the ILAE and the IBE and the secretary-generals of the two organizations were ex officio members of the Board of Directors of Epilepsy International. The directors would take in turn the posts of chairman, vice-chairman, secretary, and treasurer each for a period of one year. There was much debate about the appointment of an executive director and the localization of an office. Finally, American Richard Gibbs was given the appointment although there were some misgivings about his linguistic abilities being restricted to English. An office was selected in Geneva in the immediate neighbourhood of the WHO offices. The new construction was also made visible in the terminology used to name the international congresses, which instead of European Symposium and ILAE Meeting (or Congress) were baptized Epilepsy International Symposium. In 1980 it was clear that the financial burden of maintaining a staffed office in Geneva was beyond the means of Epilepsy International. With gratefulness for the valuable contributions by the executive director Richard Gibbs, notwithstanding the difficult circumstances he had to cope with, the contract was terminated by mutual consent and the work temporarily deputized by Joop Loeber, honorary editor of Epilepsy International News. Later Patsy McCall Castellano took over and the office moved from Geneva to Milan, Italy.
The next General Assembly of the ILAE and the election of the 1981-1985 Executive Committee (appendix I) were held at the Epilepsy International Congress in Kyoto. The question of a merger with the IBE was voted upon. A majority of votes by the chapters was opposed. It was therefore decided to continue the use of Epilepsy International as an agent for the ILAE and the IBE for another four years and dissolve this organization at the next General Assembly in Hamburg (1985).
Since 1967 there had been an international meeting each year in cooperation with the IBE. In the period between 1981 and the next General Assembly of the ILAE in 1985, only two more Epilepsy International Symposia took place: one in London in 1982 and the second in Washington in 1983, where it was decided to reduce the frequency of international congresses to biennial meetings. During the in-between years there would be possibilities for groups of chapters to hold regional meetings. Furthermore, activities of the committees increased and a number of workshops were organized where scientists met on invitation to deal with specific problems of epileptology.
Epilepsy International exit
In 1985 the new 1985-1989 Executive Committee (appendix I) met in Hamburg and dissolved Epilepsy International. Commissions of Epilepsy International such as the commission on driving licensing and the commission on developing countries were put under the jurisdiction respectively of the IBE (driving licensing) or the ILAE (developing countries) or were split (education). Epilepsy International News was returned to the IBE and changed its name to International Epilepsy News.
[NB. From March 1991 till September 1994 a special section on ILAE affairs edited by ILAE was included in International Epilepsy News.]
From the onset Epilepsy International had published the proceedings of its scientific meetings, which were designated Epilepsy International Symposium, with the title "Advances in Epileptology". By coincidence the publisher announced that this series had to be terminated for economic reasons. The last volume dealt with the 1987 Epilepsy International Symposium in Jerusalem. The organization had started before the formal dissolution in 1985 and maintained that name.
Changes in the constitution and by-laws were agreed upon. One change removed the clause, which obliged the ILAE to have its congress in conjunction with the World Congresses of Neurology. Another pertained to the process of electing new officers. The new president would be chosen first followed by the other officers in a stepwise procedure by mail-ballot.
New Delhi 1989
The first congress separate from the World Congress of Neurology was held in New Delhi. The meeting in a less affluent country was done on purpose. Apart from dissemination of knowledge, the congresses started to raise important sums of money by letting exhibition space to industries wishing to present their products to the participants. In India the total balance was presented to the local chapter. The increased income of the symposia reflected increased activity of pharmaceutical industries to develop novel antiepileptic drugs. More stringent requirements by governments for proof of drug efficacy and safety before permitting registration also enhanced interest among clinicians. As in many other disciplines the number of congress participants increased substantially. This was not lessened by the initiation by the IBE of meetings specifically tuned to patients, their relatives and their friends. The congress always maintained part of the programme designed for the interest of the IBE and did not seem to lose attendance.
At the General Assembly a new 1989-1993 Executive Committee was elected (appendix I). Outgoing president Fred Dreifuss looked back at his four years in office and remarked:
"In the last several years it has been the aim of the League to become more representative by encouraging the formation of more chapters. The number of commissions was enlarged to encourage ongoing activities at all times in the area of the League's interest which were more sharply focused through the efforts of the Long Range Planning Commission, which proposed long range goals and strategies for their achievement. This led to the formation of the commission on education responsible for providing educational materials and the integration of workshops and other educational activities. A commission on epilepsy surgery is investigating the worldwide status of this treatment modality in order to define the role of surgery and to establish guidelines. The commission on epilepsy, pregnancy and the child dealing with teratogenicity of antiepileptic drugs, the effect of pregnancy on pharmacokinetics and the new science of molecular genetics and a commission on pediatric epileptology, the result of an increasing worldwide interest in the syndrome characteristics of epilepsy in childhood have added to the scope of our activities. The commission on classification has proposed a classification of epileptic syndromes and the epilepsies in addition to the previous classification of epileptic seizures and the antiepileptic drug commission has provided a final report concerning guidelines for antiepileptic drug clinical evaluation.
While the meeting of ILAE and IBE has served as a place where ideas and plans can be exchanged, new scientific developments have demanded an increasing attention to fostering a closer interaction between basic scientists and clinical scientists to ensure that the latest developments in basic science are appropriately applied to issues of clinical concern. This has led to plans for the establishment of a commission on basic sciences in epilepsy to conduct investigator workshops in association with future meetings of ILAE. Issues concerning epilepsy practices and education in developing countries and the worldwide problems in employment, the worldwide trend towards self-help organizations and social issues relating to the family continue to be of vital importance and are under the purview of both the League and the Bureau. More and more the two organizations are working close together though the decision was made some years ago to keep them administratively separate. I happen to believe that this was a wise decision. In the years between the biennial meeting of the League regional meetings are now taking place and these address areas of specific regional concerns. Thus the British-Danish-Dutch organizations, the Central European groups, the Southern European group, the PanAfrican, the PanAmerican and the Oceanic chapters are meeting in alternate years. The process has thus become a continuous one, with an increasing emphasis on better communication among a rapidly increasing network of colleagues numbering in the thousands. One of the things about which I am particularly pleased is the more than 25% increase in size of the organization in the past four years with the introduction of 10 new chapters which will be brought before this General Assembly for ratification."
(vide speech outgoing president 1993-1997, p. 42)
For several motives certain members of ILAE chapters in Europe found reason to discuss the establishment of a new organization. After heated discussions it was finally decided to create a regional structure within the ILAE with an Advisory Council representing all European ILAE chapters, and a Commission on European Affairs, in its majority elected by the European chapters but responsible to the Executive of the ILAE. Perhaps what was happening now Lennox43 had surmised in his statement more than thirty years before "...a similar movement, possibly encouraged by the transatlantic activity (to form an all-American Epilepsy Society), got under way in Europe."
In 1994 the Commission on European Affairs started the European Congresses of Epileptology (ECE) during the years between the joint ILAE/IBE congresses. In this respect it is possible to make a parallel between the meetings of the American Epilepsy Society and the ECE. Both are organized by the professional (ILAE) chapters. Regionalization is almost a must with the rapid growth of new chapters all over the world (vide appendix II). In 1996 the ILAE Executive also established a Commission on Asian and Oceanian Affairs. The relation of the Asian and Oceanian epilepsy organization to the ILAE remains to be fully defined. They began to organize biennial congresses in that region from 1996 onwards. In the same vein the next Executive Committee established a commission on Latin American Affairs which will organize its first biennial congress in the year 2000.
[NB. Although this is not the place to elaborate on the regional activities one example may be given to illustrate that these are not limited to the organization of congresses. In 1997 the Commission on European Affairs established the European Epilepsy Academy (EUREPA) and had its constitution approved by the General Assembly of ILAE.]
In Oslo the 1993-1997 Executive Committee was elected. In his address to the General Assembly, outgoing president Harry Meinardi summarized the activities of the League during the 1989-1993 term. A precis of that speech is rendered here:
"In essence the policy to work through commissions had been stepped up. These covered Antiepileptic Drugs, Classification and Terminology, Education, Epidemiology and Prognosis, Genetics Pregnancy and the Child, Neurobiology, Neurosurgery, Pediatric Epileptology, and Tropical Diseases. Plans were made to establish commissions for and some preliminary work had been done on the topics Economic Aspects of Epilepsy, the use of Clinimetric Principles for Outcome Measurement in Epilepsy Care, and Epilepsy and Trauma.
A policy statement for the assessment of membership applications was accepted. Also a policy was worked out for the relationship with commercial sources whose financial support on the one hand is needed but this should not jeopardize the independent judgement and operation of the ILAE.
The guidelines for the Organization of Congresses were revised.
The establishment of a staffed office, similar to the one supporting the IBE Executive was in principle accepted.
A protest against the rule excluding people with epilepsy was sent to the authorities regulating blood-donation. Similarly a request was forwarded to the appropriate authorities to take antiepileptic drugs off the list of doping agents or at least to provide ruling which would exempt a person with epilepsy from the rule prohibiting the use of drugs on that list.
Of course the effort to establish chapters round the world was actively pursued as can be seen from appendix II. Perhaps for the first time a chapter was recommended for disaffiliation in view of the changed political situation. This concerned the Yugoslavian chapter which was considered no longer to represent all its former states. Indeed, at the 1993 assembly the provisional acceptance of Slovenia was ratified. The chapters list comprises 44 entries, but not all of them "in good standing". In the spring of 1993 the Executive has added to the By-Laws
...this shall be interpreted with regard to non-payment of dues as follows: "If a chapter fails to pay for the first time, the treasurer shall request an explanation and present the case at the next meeting of the Executive Committee. When a chapter fails to pay its annual dues twice (consecutively) without the written consent of the Executive Committee, the chapter will be proposed to the General Assembly for disaffiliation."
In his speech the outgoing president also summarized annual reports received from the chapters. This is, however, beyond the scope of this treatise.
In Dublin the 1997-2001 Executive Committee started its reign. The order was given to produce the present overview commemorating ninety years of the International League Against Epilepsy and its journal Epilepsia. Hopefully this can form the basis for a more extensive history of epileptology when the centennial will be celebrated in 2009.
This section shall end with excerpts from the speech44 of the 1993-1997 outgoing president to the General Assembly. In the next section an attempt will be made to sketch the fields in which the ILAE has been active over the years.
According to Ted Reynolds:
"...Progress in education, training, services and care (in the field of epilepsy) has been slow and patchy in the developed world and almost non-existent in the developing world. Very few departments of health give much or any consideration to the problems of epilepsy, despite the scale of the problem.
In order to begin to address these universal problems in a global, international, collective manner, my first objective was to improve the lines of communication within the League and to make it a more visible, cohesive and effective organization at a time of rapid growth.
Communication and growth
As described in my mid term report, a staffed office for the secretary-general, Prof Peter Wolf, was established in Bielefeld, Germany, for the first time in the Leagues long history since its birth in 1909. I am very grateful to Peter Wolf and his assistant, Mrs Irene Kujath, for establishing and improving communication with the chapters, processing new applications, and coordinating the growth of the ILAE. The number of chapters has increased from 40 in 1993 to 62 four years later in 1997, an unprecedented growth rate of over fifty percent. Although half the chapters are in Europe, we now have chapters in every continent, and the world map of ILAE is not unlike the British Empire on whom it was said "the sun never sets". We are now a truly global organization.
Since 1994 the office has been responsible for producing for the first time ILAE Annual Reports in each of the last three years. Another new initiative has been the establishment of the League's first newsletter, Epigraph, under the editorship of Prof Simon Shorvon. Epigraph has been produced twice yearly since its inception in 1994, and is sent free of charge to all ILAE members, thanks to sponsorship. Most chapters have now submitted their membership lists and the newsletter currently reaches approximately twelve thousand members.
Under our new editor, Prof Tim Pedley, our official journal Epilepsia expanded to a monthly journal in January 1995. Manuscript submissions have increased by twenty percent, and standards have risen with an impact factor of 2.340 (17th out of 98 neuroscience journals). Submissions and acceptances have slowly become more global, although still dominated by the developed countries who provide most of the four thousand plus subscribers, at least in part because of the high cost of the journal. For these reasons a pilot project of a low cost quarterly Epilepsia Digest has been established in India since 1996 under the editorship of Dr Rajendra Kale who liaises closely with Tim Pedley. If this project is successful, we hope to extend the scheme to other parts of the developing world. At the same time, in order to make Epilepsia more accessible to a wider audience, the subscription rates have been greatly reduced under a new five year contract with the publishers, Lippincott Raven.
Another development which I have encouraged is the application of public relations techniques and advice from Harrison Cowley Public Relations in London to our organization, and especially to the ILAE/IBE/WHO Global Campaign (vide infra) to increase the profile of ILAE as well as epilepsy. The League now has its own portable display stand for use not only at epilepsy congresses but, most importantly, at neurological and other events.
Another idea which is gradually taking shape under a joint ILAE/IBE Working Party, chaired by our treasurer, Prof Pete Engel, is a joint ILAE/IBE website, possibly in collaboration with the British Medical Journal, for whom Rajendra Kale is a consulting editor. This will probably be established in 1998. I am also grateful to Prof Harry Meinardi for beginning the difficult task of establishing an ILAE archives, currently in the Netherlands.
Thanks to the considerable efforts of our treasurer, Pete Engel, the League's finances have never been in a more healthy state. New procedures for the collection and acknowledgement of chapter dues, new accounting systems and investment advice, have reorganized and streamlined the finances. Furthermore, although ILAE activity and expenses have grown every year, the latter has never exceeded income, which is mainly from Epilepsia, congresses, commission grants and chapter dues. As a result, ILAE resources have grown each year and the new Executive will begin its work in a sound financial state.
With the growth and globalization of ILAE, there have been important regional developments. A unique regional structure has been developed and implemented in Europe which has 31 chapters. This is described in the second issue of Epigraph for 1997 and it may serve as a model for other regions. Each chapter is represented by one member in a European Advisory Council which has been chaired by Peter Wolf. The council elected five of its members to serve on a new European Commission. This is a novel development as constitutionally and traditionally members of all commissions have always been appointed by the president. In this Regional Commission, however, the president appoints only two further members and chooses the chairman. The European Commission receives its brief from the president but also receives advice from the European Advisory Council. The commission reports to both the ILAE Executive and to the European Advisory Council.
At the first Asian and Oceanian Epilepsy Organization (AOEO) Congress in Seoul in September 1996 I convened a meeting of representatives of Asian and Oceanian countries irrespective of whether or not they had a League chapter. With the agreement of this group, I subsequently appointed a Commission on Asian and Oceanian Affairs under the chairmanship of Prof Masakazu Seino, former ILAE executive member and treasurer. It is also hoped that the AOEO will evolve into the equivalent of the European Advisory Council as more chapters are developed in the region. The second Asian and Oceanian Epilepsy Congress will be held in Taiwan in November 1998.
Preparatory work has been underway hopefully to establish a similar regional structure for Latin America, following the seventh Pan American Epilepsy Congress in Buenos Aires in September 1997. This and other regional developments will be the responsibility of our new president and Executive.
I was pleased to attend the first Pan Arab Congress on Epilepsy in Riyadh in March 1997. Other informal regional groupings include those of the Mediterranean and Pacific Rim countries.
ILAE/IBE/WHO global campaign
Both ILAE and IBE are non-governmental organizations affiliated to WHO. In view of the political neglect and low profile of epilepsy referred to in my inaugural report and in this report, I proposed to WHO in January 1996 a global initiative for this world-wide problem. Following a meeting and workshop of the Developing Countries Commission in Geneva in June 1996, the WHO agreed in principle to this idea.
The Global Campaign Against Epilepsy is a joint initiative of three world-wide organizations, the ILAE (professional), the IBE (lay) and the WHO (political). It was formally launched in Geneva on June 19th 1997 and Dublin on July 3rd 1997.
To improve the acceptability, treatment, services and prevention of epilepsy world-wide.
- To increase public and professional awareness of epilepsy as a universal, treatable brain disorder.
- To raise epilepsy on to a new plane of acceptability in the public domain.
- To promote public and professional education about epilepsy.
- To identify the needs of people with epilepsy on a national and regional basis.
- To encourage governments and departments of health to address the needs of people with epilepsy, including awareness, education, diagnosis, treatment, care, services and prevention.
To achieve the above objectives, the campaign is developing two parallel and simultaneous programmes over the next four years:
- A global public awareness programme.
- A programme of practical assistance to governments and departments of health working through the world-wide network of ILAE/IBE chapters and epilepsy organizations, and the WHO network. This will take the form of encouragement, guidance, advice, information and assistance, especially in identifying the needs of people with epilepsy, and in the education and training of public and professionals.
Individual chapters, countries and departments of health will be encouraged to develop their own national campaigns, depending on local needs and resources.
The Global Campaign is being developed and monitored by an International Consultative and Collaborative Committee made up of members of the three organizations and chaired by myself."
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