| Much has happened this year with respect
to the Global Campaign, Epilepsia, our website, the Classification
Task Force, a strategic planning meeting and efforts to formalize
the administrative structure of the League, preparation for the
upcoming elections, and a personnel turnover in my own office.
To begin with the last item, I would like to introduce Mr. Doug
Hawkins, who is replacing Betty Crockford as my chief administrator,
and who, in this role, will also be working for the League. Betty
is now working for the epilepsy center at Baylor University in Houston,
Texas. Doug was recruited from the administrative staff of the neurology
department at UCLA, is extremely capable, and I feel very fortunate
that he has accepted this position.
Global Campaign: The IBE and ILAE presidents accompanied
Hanneke de Boer, Ted Reynolds, and Leonid Prilipko to the WHO Neuroscience
NGO meeting in Geneva in December. It was clear that epilepsy was
very well organized, by NGO standards, and that the WHO was particularly
impressed by what they felt was an ideal relationship between a
professional and a lay disease-oriented organization. One reason
for their enthusiastic support of the Global Campaign seems to be
due to their view that this is a good model for other disease-related
organizations to follow. Our proposal to move the epilepsy project
to the cabinet level, the highest priority for WHO, was approved,
and at least one cabinet member apparently indicated that this was
the best proposal that had been seen so far. These are very exciting
developments, and Ted, Hanneke, and Leonid deserve our appreciation,
and congratulations, for carrying the Global Campaign this far.
The next official activity of the Global Campaign will be the Congress
on Epilepsy as a Public Health Priority in Dakar, Senegal, in May,
at which time it is hoped to prepare an African declaration similar
to the European declaration approved in Hamburg in 1998. There will
then be a second formal launch of the Global Campaign in Geneva
in June. Latin American, Asian and Oceanian, and North American
declarations are planned for the fall.
Epilepsia: Our contract with Lippincott, Williams &
Wilkins for publication of Epilepsia will expire this year.
We were delighted to learn that there was considerable competition
among publishers for this contract, a tribute to the high profile
of the journal, for which Tim Pedley deserves credit. A meeting
was held on March 3 in New York City with our journal consultant,
Morna Conway, and representatives from the three finalist publishers:
Lippincott Williams & Wilkins, Wiley, and Blackwell. This was
attended by Tim Pedley, Simon Shorvon, Giuliano Avanzini, Peter
Berry, and myself. Peter Wolf was unable to attend, but representatives
of all three publishers met with him in Bielefeld. All three publisher
gave very impressive presentations, and each has different strengths
and weaknesses that made a decision difficult. At our Executive
Committee meeting in Basel in April, we agreed that any of these
would be an excellent option, but chose Blackwell because of their
strong emphasis on electronic publishing.
World Wide Web: The committee assigned to negotiate our
relationship with WebSciences (Tim Pedley, Simon Shorvon, Phil Lee,
Mike Hills, Johan Falk-Pedersen, and I) met in Los Angeles with
Michael Chase of WebSciences on January 15 and 16. WebSciences has
already received considerable funding from the U.S. National Institutes
of Health that can be applied to this project. Simon joined us initially
by phone conference. At this meeting, we completed a draft agreement
between IBE, ILAE, and WebSciences which was subsequently accepted
by the Joint Executive Committee in April, but a more formal legal
instrument will be needed to finalize the partnership. With respect
to additional funding, we are considering various scenarios that
would invite the pharmaceutical industry to sponsor selected aspects
of our portal site. It was the general consensus of the group, however,
that we would not want to give any single company an administrative
role in the overall website.
Classification Task Force: The four working groups have
almost completed their initial tasks. Warren Blume and his working
group have produced a draft glossary for describing ictal events,
Peter Williamson and his working group have produced a list of epileptic
seizures that represent diagnostic entities and are in the process
of writing up descriptions for each, Natalio Fejerman and his working
group have produced a list of accepted epileptic syndromes and diseases,
most of which have now been described in detail, and Harry Meinardi
and his working group are completing their classification of impairments.
Efforts of the first three working groups have been posted on a
closed website, so that all members of the Task Force can read and
comment on them. The written descriptions of seizures, syndromes,
and diseases are being completed in collaboration with Arbor Press,
who are publishing them as chapters in their CD-ROM textbook of
neurology, Neurobase. Several meetings of the Task Force have been
held, the last in Orlando, Florida, in December, to discuss the
remaining issues with respect to epileptic seizures, syndromes,
and diseases. The group is still not fully agreed on how to list
and define focal symptomatic seizures, how to identify syndromes
and diseases associated with such seizures, and how to divide up
what had previously been referred to as the idiopathic generalized
epileptic syndromes. Once these final chapters have been written,
the original core task force will meet to finalize these lists and
descriptions, and come up with proposals to classify them, perhaps
in more than one way, for specific purposes. After this is completed,
the website will be made public, so that anyone who wishes can comment.
It is our intention to eventually publish our recommendation, including
all the Neurobase chapters, as a supplement to Epilepsia in time
for it to be discussed and voted on at the next International Congress
in Buenos Aires in May 2001.
Strategic Planning and Administrative Issues: A major effort
this year, and perhaps the most important activity of the League
this executive term, was the strategic planning meeting in Basel
on April 15, which was facilitated by Walt Schaw. We are very grateful
to Ann Little, IBE Secretary, for her tremendous help in organizing
the administrative aspects of this meeting. The invitees included
the Executive Committee and chairs of our thirteen commissions,
plus Hanneke de Boer, Amadou Gallo Diop, Charlotte Dravet, M.C.
Maheshwari, Harry Meinardi, Amel Mrabet, Emilio Perucca, Leonid
Prilipko, Ley Sander, and Bettina Schmitz. Only six invitees, Bernardo
Dalla Bernardina, Phil Lee, Dick Mattson, Emilio Perucca, Phil Schwartzkroin,
and Michael Trimble, were unable to attend, but all commissions
were represented. This was a very enthusiastic response, given the
short notice, and confirms a tremendous commitment to the League.
The session was extremely productive, and the results will be rediscussed
by the Executive Committee and circulated to the chapters later
this spring. In addition, Walt Schaw, acting as an administrative
consultant, has worked with the Executive Committee and staff to
complete job descriptions for all of its members, and currently
is helping us to clearly define policies, procedures, and operations
for each of the major offices. Administrative structure continues
to be an important issue with respect to future plans of the League,
and will be the primary focus of discussion at our next Executive
Committee meeting. We decided at the last 1999 EC meeting in December
that the EC should meet three times, rather than twice, per year.
Consequently, we had our first 2000 meeting in April in Basel, will
have our second in Geneva after the Global Campaign relaunch in
June, and the third in Los Angeles at the time of the American Epilepsy
Society meeting in December.
Election Procedures: Elections for the next President and
Executive Committee begin this year, and the new officers will be
installed at the next General Assembly, during the International
Congress in Buenos Aires, May 2001. Ted Reynolds (UK), past president,
will chair the Nominating Committee, and Harry Meinardi (Netherlands),
Tim Pedley (US), Francisco Rubio-Donnadieu (Mexico), and Masakazu
Seino (Japan) have agreed to serve as members, giving the committee
wide geographical representation. Letters to the chapters requesting
nominations for President were sent out at the beginning of April,
with a deadline of June 15. The three receiving the most nominations
will become candidates, the ballot for President will be sent to
chapters on July 1, and the deadline for receipt of votes will be
October 1. This will be followed by a similar process to nominate
and elect the remaining officers.
Jerome Engel, Jr., M.D., Ph.D.
President, ILAE
April 25, 2000
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