Archive of the International League Against Epilepsy
- International League Against Epilepsy (1909)
- Archives and manuscripts
About this work
The papers in this collection represent the history of the ILAE from the 1960s until 1993, while the League remained a fairly small, volunteer led organisation. The bulk of the papers date from the time of Harry Meinardi in the 1980s and 1990s. They cover the administration and governance of the League, the creation of Epilepsy International, scientific research and developments and the ethos of the league as it fought to dispel the myths around epilepsy. It is largely written in English with around 30% in Dutch. Multiple other European languages are also represented in the collection.
The papers represent the centre of the administration, with good sets of minutes and reports from the Executive Committee, General Assembly, Congresses and commissions. All of the work of the ILAE by its committees, commissions and officers was reported to the Executive Committee. Some officers papers have also been deposited with the most notable being those of Peter Engel while he was Treasurer.
The history of the league after 1993 is represented in the papers of the Information Officer, Simon Shorvon whose papers date post 1993. His papers however only reflect his role and the main papers from this post 1993 period remain with the ILAE.
Some of the work of the League was undertaken at national level by the respective member chapters. Papers from the 1980s which the ILAE created in correspondence with the chapters are included in this collection, but the records created by the chapters themselves remain with each member chapter and do not form part of this collection.
Also represented in the collection are the papers of the subject specialist commissions being that for Antiepileptic Drugs, Classification and Terminology, Education, Genetics Pregnancy and the Child, Long Range Planning, Neurobiology, Neurosurgery, Paediatric Epileptology, Drivers' Licensing, Tropical Diseases, Developing Countries and Fundraising. There are also extensive papers from the international symposia and congresses held along with additional workshops and conferences. The programme and scientific paper submissions exist for many of these events.
In smaller quantities are papers relating to the ILAE's relationship with the World Health Organisation and the World Federation of Neurology; along with files on candidates nominated for the Ambassador for Epilepsy Award and the Award for Social Accomplishment. There are also some editorial files relating to the production of the newsletter, although the actual published newsletters are missing, and some editorial files relating to the Journal Epilepsia.
This collection includes material which has not yet been catalogued. Additions to an archive are referred to as 'accruals'. A summary of the uncatalogued materials in this collection is provided under 'Accruals'.
The collection is arranged into 14 sub sections as follows:
A/ Governance 1953-1993
B/ Executive Committee 1970-2007
C/ General Assembly 1969-1989
D/ Council 1980-1991
E/ Joint Executive of the ILAE and IBE 1971-1992
F/ Epilepsy International 1976-1985
G/ Chapters 1961-1992
H/ Commissions 1966-1993
J/ Relationship with the World Health Organisation 1952-1992
K/ International Symposia and Congresses 1969-1992
L/ Workshops 1968-1993
M/ Epilepsia Journal 1958-1991
N/ Newsletters 1973-1989
P/ Ambassadors and Awards 1977-1989
The ILAE (International League Against Epilepsy) is a voluntary organisation founded in 1909 as an association of physicians and allied health professional working in the field of epilepsy. It is believed to be the oldest international sub specialist organisation in the field of neurology, and one of the oldest in medicine.
Its mission when it was founded was to assist in the promotion of better health care for patients with epilepsy and this mission is broadly the same today. In 1909 it resolved to begin a data gathering exercise on the history, causes and manifestations of epilepsy in different countries. From this data would be formed regulations, laws and private and public aid organisations. Today ILAE works to ensure that health professionals, patients and their care providers, governments, and the public world-wide have access to the educational and research resources that are essential in understanding, diagnosing and treating people with epilepsy.
It was founded at an inaugural meeting in Budapest in 1909 and probably on the 30th August, by a committee comprising:
Konrad Alt (1861-1922) who founded the Uchtspringe Asylum in Germany, which provided a large scale treatment and care institution for a wide range of sensory disorders.
Otto Hebold (b. 1856) Director of the Wuhlgarten Institute for Epileptics, and now known as the Wilhelm Griesinger Hospital.
Adolf Albrecht Friedlander (1870-1949) who opened the Hohe Mark Clinic for the mentally ill and emotionally disturbed.
Vladimir Bekhterev (1857-1927) who founded the PsychoNeurological Institute, now the St Petersburg State Medical Academy
Fulgence Raymond (1844-1910), Neurologist
Louis Théophile Joseph Landouzy (1845-1917)
Robert Sommer (1864-1937) Founder of the psychiatric clinic at the University of Giessen
Wilhelm Weygandt (1870-1939) Professor of Psychiatry at the University of Hamburg
Professor AugustoTamburini (1848-1919) Professor of Psychiatry at the University of Rome. Throughout his career, he was committed to social medicine, and in particular for the improvement of conditions in psychiatric institutions.
The core of the ILAE's activities both then and now was and is the communication of the medical and social truths about epilepsy. It has worked to dispel the myths, stigmas and superstitions in the general populace about the nature of epilepsy and to promote it as a medically based neurological condition. This has included work on the classification of epilepsy and inputs to ICD-10, being version 10 of the International Classification of Diseases, and in the establishment of the Global Campaign Against Epilepsy in partnership with the World Health Organisation, which was first launched in 1997.
It also serves a scientific and medical audience and this work revolves around advances in medical research and the communication of these advances throughout the world of neurology and epileptology. This research is undertaken by a series of subject specialist commissions, which are charged with particular remits. Subjects include antiepileptic drugs, classification and terminology, pregnancy, education, neurosurgery, divers' licensing, developing countries, for example. These commissions undertook research and then reported back to the ILAE through reports to Executive Committee meetings and to the wider professional world via workshops.
As a means of communication the ILAE started to organise scientific conferences very soon after its formation and published high quality scientific articles via its Journal Epilepsia.. Later communication methods included an International Resource Centre in Zurich, the production of videos and DVDs and the League were early adopters of the internet.
In terms of its administrative structure the ILAE is a voluntary organisation with an international reach via a federal structure. At its centre are the volunteer Officers being President, Vice President, Secretary General, Editor of Epilepsia and Treasurer, all of whom are eminent neurologists and epileptologists. It is governed by a General Assembly, an Executive Committee and a Council. The roles of these three bodies have changed over time but it is to the Executive Committee that the scientific, administrative and governance business of the ILAE is reported.
Since its foundation one of its guiding principles of the ILAE was that it should have an international reach. This was achieved through a federal structure of national chapters. One chapter is recognized per country and each national chapter has its own constitution and bylaws and its own President and officers, elected by individual members of each chapter. Individuals join their national chapter and that chapter provides their membership of the ILAE.
The ILAE remained small in numbers and heavily European and American focussed until 1981 when the number of national chapters began to increase significantly, until the present day when there are over 100 Chapters from Europe, North and South America, Asia, Africa, Australasia and the Middle East. Until this period it remained very much an amateur run organisation with all the work being done voluntarily by its members in their spare time. After 1993 however the League started to grow considerably. A large number of new initiatives were launched, including the Global Campaign, while numbers attending the congresses increased dramatically. This increase in size also necessitated the introduction of paid staff to administer the organisation. At this time the ILAE also started working cooperatively with other medical bodies such as the World Health Organisation.
The ILAE is not the only body working internationally for epilepsy. While the ILAE represents professionals, the IBE (International Bureau for Epilepsy) works on behalf of patients and the public. From the 1950s certain ILAE members had advocated for the creation of one joint organisation to cover all aspects of epilepsy. In 1971 at a meeting in Amsterdam definite proposals were put forward to merge the ILAE and IBE into a single international organisation, called Epilepsy International. In the following years a full merger was considered to be too big a step and instead a shared administrative office was created to develop shared projects, produce a newsletter and to run fundraising activities. Epilepsy International operated as an agency of the IBE and ILAE and it was decided to delegate to Epilepsy International all matters (including the organisation of the international congresses) except for commissions, membership and the Journal. The respective presidents, secretaries and later treasurers formed the Executive Committee while the League and Bureau's own Executive Committees formed the Board of Directors. A full merger never occurred however and the organisation was dissolved in 1985 as it never received the full backing of the ILAE chapters. Co-operation between the ILAE and IBE continued however in the form of the Joint Executive Committee.
The ILAE is an on-going organisation whose aims match those of 1909. Information about the current organisation and its current projects is available on their website www.ilae.org.uk .
Acc 2551 (December 2019): Organisational records of the International League Against Epilepsy c.1990s-2000s; reports commissioned by the ILAE and related publications, including Epilepsia journal (1909-1915 and 1937-1955).
Acc 2676 (Jan 2023): 8 boxes of records from Ted Reynolds, ILAE Vice President from 1989-1993; President 1993-1997 and Past President 1997-2001. Includes minutes, reports, annual reports, presidential correspondence and papers, congress programmes, and related papers.