| New York 1946
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.]
Paris 1949
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.]
Lisbon 1953
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:
Propaganda
This was made by sending the Dutch film on epilepsy: "A
life at stake" abroad, where it was shown to doctors and
laymen.
International cooperation
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.
Constitution
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
Brussels 1957
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.
Rome 1961
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."
The Mosovich-motion
"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:
(1) Education
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?
(2) Employment
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.
(3) Mobility
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.
Vienna 1965
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.
Barcelona 1973
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.
Amsterdam 1977
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.
Kyoto 1981
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.
Hamburg 1985
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."
Oslo 1993
Regionalization
(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.
Dublin 1997
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.
Finances
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.
Regional developments
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.
Mission
To improve the acceptability, treatment, services and prevention
of epilepsy world-wide.
Objectives
- 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.
Programmes
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." |
