Epigraph Volume 12 Issue 1, Winter 2010
From The Information Officer
All Quiet. But is it . . . .
After the big build up to the Centennial Congress in Budapest, which celebrated the many advances in our understanding of epilepsy and the improvement in epilepsy care over our first century, everything seems to have quieted down. At the same time that we were all busy with the development of the Budapest Congress, there was a prolonged period during which the new President and his colleagues on the Executive Committee were elected. And, just as after many big events and celebrations, things seemed to come to a stop as the fall and early winter have passed seemingly uneventfully. As with every building project, months can pass with no progress that is visible to the public, but nothing visible doesn’t mean that nothing is happening. The reality is that the period since the Congress in July has been anything but quiet. Several years ago, at a meeting of all of the commission chairs, there was a general conclusion that planning for League goals and the commissions’ activities in support of those goals were beginning far too late in the Executive Committee’s term of office for the commissions to be able to achieve those goals.
Building on those recommendations for early involvement and plan development on the part of the commissions, Nico Moshé and the new Executive Committee led the development of a broad strategic plan that the commissions are using to guide their activities for the next four years. There have been a number of meetings, starting in Budapest with the Strategic Planning Task Force that brought together many League members as well as partners with common interests for improved epilepsy care to create the master plan. This plan, led by Gary Mathern, became the guide for the new commissions to create their programs for the coming four years. There have been two meetings with all of the Commission Chairs, the last before the American Epilepsy Society meeting in Boston, to finalize the goals and to begin to coordinate overlapping plans with one another. Never before have the Commissions moved so far so early in their terms. The effort from the Commission members has been extraordinary, especially for an organization based on voluntary effort.
In 2010 we will begin to see the first visible signs of these efforts. Mixed in with this busy year of the Regional Congresses (see the schedule below) will be the first steps in the implementation of the plans. In the coming months we will be reporting on the Commissions and their individual goals along with how they plan to accomplish them. The Education Commission, which remains a major focus of the League, is developing new programs to extend our reach to larger audiences with new technologies and educational approaches. A major decision will be where we should focus our educational efforts and how we should do it. You will hear more about this key activity in coming editions as well as about the new educational portal on the Web site.
A final major effort will be that of communications. We have not been as effective as we could in keeping members informed of League activities and major events in the epilepsy world. It is a New Year’s resolution to do better. But there is also an important communication goal that has largely been ignored: making sure that the world outside the epilepsy community knows that seizures and epilepsy are a major public health issue that needs much greater attention than they have received over the years. What is especially promising in getting this message out is that many of the organizations focused on epilepsy are coming together in this effort, with the goal to deliver the same important message that epilepsy matters. Lots of planning and action are to come.
So, for the moment on the surface all is quiet, but by the end of 2010, it won’t be.
Edward H Bertram
Solomon (Nico) L Moshé
As we are approaching the first six months of the new Executive Committee, it is a great opportunity to thank all of you who have worked so hard to promote and push forward our League’s agenda. Much has been accomplished through your dedication; and the coordinating efforts of the Executive Committee to direct our activities in an open and transparent fashion.
To start, the Commissions have been formed and are developing their respective plans in alignment with the new Strategic Plan, which is posted on the Web. One aspect of this plan is the development of broad collaboration across the Commissions as they work together to succeed in areas where their goals overlap. To stimulate this collaboration the Commission Chairs have met twice and have had an opportunity to exchange ideas and to develop these active collaborations. Coordinating these commission efforts will require new methods of communication that allow the individual working groups to stay in regular contact through Web conferencing and Web file rooms for each Commission and its liaisons. Gary Mathern and the Strategic Task Force will continue to monitor our progress toward achieving our strategic goals as a team.
Sam Wiebe, Secretary-General, working with Peter Berry, Chief Staff Officer, has reorganized the office to improve its efficiency. Sam is also supervising the changes in our office and personnel dealing with chapter issues, including the maintenance of effective databases, chapter development and growth. Effective 1 January 2010 these functions, previously handled by the Brussels office, will now be served by Chancel in Dublin. Chancel is focused on epilepsy and has been managing our Congresses for a number of years, as we and IBE are its only clients.
The Strategic Plan recommended the establishment of the Finance Committee (Section 3.3.1), to be chaired by the Treasurer, Emilio Perucca. It also recommended that we establish a financial advisory council including professionals from the corporate environment (Section 3.3.2). This council would offer advice to ILAE regarding its investments and reserve policy as well as potential fund-raising opportunities. Members of this council will have expertise in finance, a willingness to volunteer time and ideally an interest in epilepsy. The first meeting of the new Finance Committee was held in Boston, on 6 December 2009.
The Global Campaign Secretariat met with the WHO leadership in October 2009. The goal of the Campaign is to promote and facilitate initiatives for improving the standards of comprehensive epilepsy care, including diagnosis, treatment, and social care in sustainable ways. The Secretariat created a Task Force headed by Shichuo Li and Helen Cross to develop the plan of action for the next several years. The Task Force will submit their recommendation by the Spring of 2010.
The Executive Committee negotiated a new contract for the journal Epilepsia with Wiley-Blackwell, the current publisher. This contract was signed in December 2009 and ensures the continuing growth of our publication agenda.
The Executive Committee is also actively working on several important issues:
- The development of a transparent conflict of interest policy regarding our interactions among ourselves as well as our various partners. The Past President, Peter Wolf, and Michel Baulac are heading this Task Force.
- The First Vice President, Tatsuya Tanaka together with Michel Baulac, Marco Tulio Medina and Simon Shorvon are putting the final touches on the Constitutional Amendment to be voted on at the Rome Epilepsy Congress in 2011. Our goal is to ensure global representation in the Executive Committee.
ILAE has been hard at work building strong relationships with health organizations and with corporate partners. Because the League is a federation of Chapters, our strength derives from our collective experience, vision, and concept of how we can all work together to improve education and reduce the treatment gaps in every part of the world. During the past few months, the Executive Committee explored ways to augment our interactions with all our partners, including our corporate partners. Several opportunities and challenges were identified and the League is actively pursuing the options. In the next few months, Gary Mathern, the Chair of the Strategic Planning Task Force will be communicating with the Chapter leaders asking for input in addressing what we call the ‘Big Idea’. For example:
- What if we had the opportunity to take on a significant major initiative that would impact epilepsy research, education, and patient care for years to come . . . what project/program would we want to accomplish?
- What if we had access to additional resources — people and money — for a program of monumental proportions, not only to set the program into motion but also to guide its progress and effectiveness for years to come . . . what kind of program would we want to see ILAE and our partners establish?
We need you to become engaged in this process. We want you to recommend one or two ILAE initiatives that would have the most impact on you and your region of the world — and tell us why the impact would be significant. Over the next several months, we need you to give this process your serious attention and strong endorsement. We want your ideas, your expectations, and your recommendations.
The ‘Big Idea’ will be developed in tandem with the external message we want to identify and deliver to all concerned: persons with epilepsy, caretakers, caregivers, governments and non-government organizations (NGOs). Working with IBE, WHO, as well as our other partners worldwide, we hope to craft a message that emphasizes the importance of epilepsy as a chronic disorder that hurts many lives, not just the lives of the people with the disorder. However, we also want to give the hope that something can be done if we can provide sustainable access to care and if we have the support for developing new and better treatments.
In my short time as President, I have been impressed by the dedication, innovation and enthusiasm that so many are bringing to the cause of epilepsy. I thank all of you for the long hours that you have devoted to working for our League’s mission.
Solomon (Nico) L Moshé
Edward H Bertram
One of the important functions of any organization is effective communication. The first goal of such communication is letting members know what is happening that may affect the goals and operations of the organization as well as their professional lives. Another important goal is announcing events that may be of importance and interest. The ILAE has been moderately effective in these two areas. However, there are other communication roles in which the League has been less effective. One is fostering a sense of community and common purpose. Although the League is made up of over one hundred Chapters that are centered around the goal of improving the lives of patients with epilepsy, the League has not been as active as it could in creating a truly international sense of community. There are, of course, many impediments to creating such a large-scale global community, including distances and time zones, as well as multiple languages, cultures and diverse national needs. These are issues that must be addressed as the League moves forward to meet the goals of an ambitious Strategic Plan. The fourth major role for communication is letting the world outside of the epilepsy community know about the disorder, and the significant and often unrecognized burden it places on patients, their families and society. We have been largely inactive and ineffective in this critical area of communication.
For the League to succeed in its important goals, it must develop better means and efforts to ensure that its members as well as the outside world are well informed of our activities as well as the many issues that are faced by patients with epilepsy. But how? We are now living in a world in which the potential for placing information in front of everyone is unprecedented. And therein lies the problem: we are all so overwhelmed with so many messages on a daily basis, all crying for our attention, that those things that we really want to hear or read about are lost in the sheer mass communication noise that drowns out all but the most insistent voices. In addition the methods of communication that we use to obtain our information are expanding daily: Web pages, search engines, e-mail, social networks, tweeting, newspapers, journals, printed announcements, radio, and television are some of the means, but not the only, by which others are trying to get our attention. Many of the important messages never reach us, simply because we are overwhelmed with information. Our great challenge, therefore, in making sure our members know what is happening in the League is determining first what are the most important issues that should be emphasized and then finding the means to get the information to all who should know. Similarly, to provide epilepsy with increased visibility to the greater world, we have to decide what to emphasize that will get the attention of those who really aren’t interested in epilepsy. We must then convince them that epilepsy is a critically important medical and social issue.
Meeting the challenges of improved communication within the League and to an uninformed and disinterested outside world will be a journey into new territory. Although we know our field very well, it is less clear what we need to emphasize so that the message rises above the background noise from continuous bombardment of mass communications. It is also not clear what we should be sending to our League colleagues who have diverse interests and needs. These issues of what to communicate and how, are made more complex as we reach out to the world outside of our community to develop greater understanding and support for epilepsy.
In the coming months we will be developing working groups of League members to identify the messages as well as to design a combination of communication tools that will improve our ability to reach our colleagues with the information they need. Other working groups will help define how we will reach out to others who may be able to help us make progress in the treatment of epilepsy. Finally, because we have neither the experience nor the expertise in how to communicate efficiently and effectively, especially to the outside world, we will work with professionals to refine the message and present it for the greatest impact. This effort will be a new but necessary journey on our road to better epilepsy treatment.
Edward H Bertram
|Purple Day — Increasing Epilepsy Awareness
Purple Day in Guatemala 2009
Purple Day is a grassroots effort dedicated to increasing awareness about epilepsy worldwide. On March 26th, people from around the globe are asked to wear purple and spread the word about epilepsy.
Purple Day was founded in 2008, by nine-year-old Cassidy Megan of Nova Scotia, Canada. Motivated by her own struggles with epilepsy, Cassidy started Purple Day in an effort to get people talking about the disorder and inform those with seizures that they are not alone. She named the day Purple Day after the internationally recognized color for epilepsy — lavender.
In 2009, over 100,000 students worldwide wore purple on March 26! Hundreds of workplaces and community organizations also joined the campaign, wearing purple to work and hosting Purple Day events and promotions.
The Epilepsy Association of Nova Scotia and New York-based Anita Kaufmann Foundation comprise the Global Purple Day Planning Committee, and epilepsy organizations from across the globe, including Australia, South Africa, Bulgaria, Guatemala, Israel, and the UK are promoting Purple Day in their regions.
Getting involved is easy!
- Wear purple – the international color for epilepsy
- Host a Purple Day awareness event or fundraiser
- Get the facts about epilepsy – visit www.purpleday.org
New for 2009: Sign up to be a Purple Day Ambassador in your region! The Ambassadors of Purple campaign is available to people worldwide interested in promoting epilepsy awareness. Ambassadors assist with getting schools and workplaces to host Purple Day on March 26th. They also host events, contact local media and enlist the support of local political representatives. Applications are available online.
For more information, please visit www.purpleday.org.
|New ILAE Strategic Plan
Gary Mathern, MD
So, What’s the “Big Idea”?
What is a "Big Idea" and why should the ILAE devote valuable and limited volunteer time and resources toward developing one? This is not an empty concern, as addressing this question helps define the values and culture of our international professional organization, now and in the future.
As members of the ILAE and its Chapters, we understand how the League helps us in meeting the goals of our professional lives. The ILAE is the organization we turn to for educational opportunities, through its regional and international meetings and publications, to teach professionals how to diagnose and treat persons with epilepsy. In addition, by partnering with the WHO and IBE through the Global Campaign, the ILAE works to improve access to treatment and care of persons with epilepsy in regions of the world with more limited resources. Likewise, as an international organization the League serves as a point of consensus building for activities such as defining epilepsy syndromes and classification schemes that can be used throughout the world. Given these existing activities, is that not enough for the ILAE to do?
Our current portfolio and agendas, while rich in activities, accomplishments, and challenges, mostly serves members of the League. From an outside government and consumer point of view, the ILAE has a very limited presence, and it is probably true that most people with epilepsy do not know about the ILAE or what it does for them. A new objective of the ILAE, as stated in the Strategic Plan, is to consider novel opportunities the accomplishment of which would have impact on the lives and care of people with epilepsy around the globe. That is the purpose of developing “Big Ideas”. "Big Ideas" are goals that go beyond what we can accomplish as an individual organization and are large and audacious enough that they might seem impossible to achieve at first. If accomplished, however, the outcome would have such a major impact in the field that it is worth the effort. Such an accomplishment would mean working as a team with many like-minded organizations using resources from professionals and non-professionals. An excellent example was sequencing the human genome in the past decade.
At the request and endorsement of the Executive Committee, over the next several months the ILAE will embark on a process of developing some “Big Ideas”, and we need your help. Ideally, the "Big Idea" should capitalize on our existing strengths as an organization and at the same time be a goal that other partners will enthusiastically want to join in with us. The "Big Idea" may involve an educational activity, perhaps not directed just to professionals within our organization and Chapters but to other care partners who treat and diagnose persons with epilepsy. However, we shouldn’t limit ourselves to the traditionally taught educational course but focus more on what are simple things that could be done that would improve the lives of our patients. We could also begin programs that identify needs for communities all over the world so that we can impact care and improve the lives of those with seizures. As the Big Idea is developed we will also need to communicate what we are doing to consumers and others so that our organization and its mission is seen as relevant to people with epilepsy.
So, What is the “Big Idea”? We don’t know yet and that is where we need your help. Send us your thoughts about what goal, if accomplished, would have the most impact in your community or country. We will consider all of them and with our partners develop goals that we can work together to make the world a better place for people with epilepsy. Please send your ideas to us at: BigIdea2010@ilae.org.
Gary Mathern, MD
Chair, Strategic Plan Task Force
Definition of drug-resistant epilepsy
The ILAE has, for the first time proposed a consensus definition of drug-resistant epilepsy. An ad-hoc task force was appointed under the Commission on Therapeutic Strategies in January 2008. The Task Force is comprised of members with diverse expertise, including epidemiology, adult and pediatric epileptology, neurosurgery, clinical pharmacology, and clinical trial design (Appendix). A series of formal and informal meetings, teleconferences and e-mail exchanges took place during which pertinent literature was reviewed and controversial issues extensively discussed and debated. A draft report was circulated to all ILAE Commissions for comments in March 2009 and a final report was submitted to the Executive Committee in April 2009. The report was formally approved by the Executive Committee during the ILAE’s Centenary Congress in Budapest, Hungary, 28 June to 2 July 2009, and after peer review, has been published in Epilepsia (ref.). It is also posted on the ILAE’s Web site (www.ilae.org).
The ILAE Task Force has chosen the preferred term “drug resistant” to replace the terms medically intractable, refractory, and pharmacoresistant. We feel this term is more consistent with the intent of the definition, namely to identify patients for whom there is sufficient information to predict that they will have a substantially poorer prognosis for seizure remission with AEDs when compared with the population as a whole. “Intractable” and “refractory” would imply that there is no chance at all of remission, which is never the case.
This report will be an important addition to the family of ILAE classifications and terminologies. For a number of reasons, the definition of drug-resistant epilepsy has been controversial. Without consensus, diverse criteria or even a lack of explicit criteria have been employed by different clinicians and researchers, leading to an inability to compare findings across studies meaningfully or to craft practice recommendations. Thus a consensus definition may find application in broad scenarios, including (a) recommendations on when to refer patients to specialist centers for comprehensive review of diagnosis and management; (b) timing of consideration for alternative treatment modalities such as surgery; (c) selection of patients for clinical research studies of novel interventions; (d) clinical and basic research into the biology of drug resistance; (e) determination of the epidemiology of drug resistant epilepsy for planning of healthcare resources; (f) recognition of treatment resistant individuals for educational and welfare needs and other social purposes.
In attempting to address the particularly controversial elements, the proposed definition has several unique features. First, it stipulates the information required to assess the outcome of an intervention (such as an AED) so that different interventions can be measured with the same yardstick. Second, it provides guidance for the duration of seizure freedom required to define treatment success which is particularly relevant for individuals with infrequent seizures. Specifically, treatment success can only be determined after the individual has remained without seizures for either three times the prior inter-seizure interval or one year, whichever is longer. Third, the definition has two “hierarchical” levels. Level 1 is a scheme to categorize or characterize the outcome of an intervention (such as an AED), providing a framework to define treatment success or failure, based on which criteria for defining drug resistance are derived (level 2).
In essence, it is proposed that drug-resistant epilepsy may be defined as failure of adequate trials of two tolerated and appropriately chosen and used AED schedules (whether as monotherapies or in combination) to achieve sustained seizure freedom. It is important to note that no seizure frequency requirement is necessary to meet the definition. Thus, an individual with one seizure per year can be regarded as treatment resistant. Given the paucity of high quality data, the proposed definition should not be regarded as a fait accompli but a common starting point for work in progress. We ask the clinical and research community to apply and test the definition in diverse settings so that it can be refined as new evidence emerges. Your feedback is crucial!
Commission on Therapeutic Strategies
Task Force members: Patrick Kwan (Chair), Jacqueline French (Commission Co-Chair), Gary Mathern (Commission Co-Chair), Alexis Arzimanoglou, Anne Berg, Martin Brodie, Allen Hauser, Nico Moshé, Emilio Perucca, Samuel Wiebe
Kwan P, Arzimanoglou A, Berg A T, Brodie M J, Hauser W A, Mathern G, Moshé S L, Perucca E, Wiebe S, French J. Definition of drug resistant epilepsy. Consensus proposal by the ad hoc Task Force of the ILAE Commission on Therapeutic Strategies. Epilepsia. DOI: 10.1111/j.1528-1167.2009.02397.x
Time to subscribe or renew
The International League Against Epilepsy will again offer discounted subscriptions to the world's premiere titles in epilepsy research and treatment. ILAE members can purchase subscriptions or continue to receive their full subscription to Epilepsia, Epilepsies,Epilepsy & Behavior, Epileptic Disorders, Epilepsy Research and/or Seizure by renewing their subscription now. Subscriptions do not renew automatically and to continue receiving your publications without interruption, you must complete the subscription renewal form available on the ILAE Web site. All payments must be in U.S. dollars. Follow directions below.
- Epilepsia is the leading, most authoritative source for current clinical and research results on all aspects of epilepsy. 12 issues
- Epilepsies covers all subjects connected with epilepsy: psychological approaches, clinical, diagnostic and therapeutical news, and socioprofessional aspects of the condition of the epileptic. The official journal of the French Anti-Epilepsy League.
- Epilepsy & Behavior is the fastest-growing international journal devoted to the behavioral aspects of seizures and epilepsy. 6 issues
- Epileptic Disorders is a journal devoted primarily to the clinical aspects of epilepsies and related disorders. 4 issues
- Epilepsy Research provides for rapid publication of high quality articles in both experimental and clinical epileptology. 15 issues
- Seizure is an international journal providing a forum for the publication of papers on all topics related to epilepsy and seizure disorders. 8 issues
ILAE recently transitioned to new association management software called myILAE. The new software requires a personalized login and password to make purchases. Following are step by step instructions to place your subscription order.
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|Bookstore on the ILAE Web Site
There has been a steady increase in the number of books published that are relevant to epilepsy that members of the League will likely find useful for their practice or research. However, keeping up with the books that are available is no easy task. To help make the job easier we are creating this Bookstore as a service to our membership. In it publishers can provide information on their epilepsy-related books. They may also provide information on where and how to purchase the books. The League does not sell the books. http://www.ilae-epilepsy.org/booksales/index.cfm
The Bookstore is in the early stages of evolution, and we expect to add new titles and publishers on a regular basis, so please check back frequently for new additions.
There are currently five books listed. If you have authored a book, please encourage your publisher to list their book on this Web site. The cost is minimal.
|Farewells Listing on Web Site
ILAE hosts a Web page where we
commemorate our departed colleagues in epilepsy and the contributions that they have made to the field. It is our intention that this section for memorials be open to obituaries for anyone who has been active in the field of epilepsy in any capacity: clinical, social, scientific, psychological, to name but a few. There are no academic, professional or geographical requirements to be considered for inclusion in this section. There are many great things that are done locally to improve the lives of people with epilepsy, efforts that are critical in the battle against this condition. Unfortunately some of the most important contributions are done away from the limelight and may not catch the attention of the larger international community. It is the intention of this section that anyone who has been active in the field be included and have their efforts and successes more widely known. The only real criterion is that the individual worked to help relieve the burden of epilepsy somewhere in the world.
The memorial articles will be written by those who knew the person. The goal is to tell your colleagues in epilepsy who this individual was and what the contributions were. Photographs are welcome. http://www.ilae-epilepsy.org/visitors/farewells
There are two parts to this section: recent deaths and archives. The latter will be publically available to allow League members to learn about those who have gone before and the contributions they made as well as to act as a resource for those who wish to look into the history of epilepsy and those who contributed to it. We look forward to your remembrances of our valued departed colleagues. Please send them or any comments or suggestions that you may have to firstname.lastname@example.org. We will also welcome multiple remembrances from our members. The success of this project will depend entirely on the efforts of you to help preserve the memories and the accomplishments of our friends and colleagues.
|Upcoming Congresses and Educational Events (www.epilepsycongress.org)
| LASSE IV: Epilepsy and Time
Santa Monica Hotel and Conference Center in São Paulo, Brazil
28 January - 6 February 2010
2nd East Mediterranean Epilepsy Congress
Dubai, United Arab Emirates
4 - 6 March 2010
| 13th Annual Meeting of the Infantile Seizure Society (ISS)
International Symposium on Epilepsy in Neurometabolic Diseases (ISENMD)
Hosted by the Taiwan Child Neurology Society and Infantile Seizure Society
Howard Plaza Hotel, Taipei, Taiwan
26 - 28 March 2010
Abstract submission deadline: 31 October 2009
Tenth Eilat Conference on New Antiepileptic Drugs (Eliat X)
Isrotel Royal Beach Hotel, Eilat, Israel
25 - 29 April 2010
Abstract submission deadline: 1 February 2010. Send to email@example.com.
4th Baltic Sea Summer School on Epilepsy
6 - 11 June 2010
Organized in cooperation between the Commission on European Affairs and EUREPA, the European Epilepsy Academy. These programs are clinically oriented and focused on the comprehensive aspects of diagnosis and treatment of epilepsy. This program is primarily addressed to medical postgraduates and junior researchers with a special clinical/scientific interest in epilepsy. More information and online application (deadline 10 April 2010) can be found at: http://www.epilepsy-academy.org or contact Petra Novotny, EUREPA at firstname.lastname@example.org.
20th Meeting of the European Neurological Society
19 - 23 June 2010
27 June - 1 July 2010
Registration now open: http://epilepsyrhodes2010.org/registration/registration.html
|2010 San Servolo Summer School – Advanced International Course: From Basic Knowledge and Clinical Trials to Rational Prescribing in Epilepsy
San Servolo, Italy
18 - 29 July 2010
6th Latin American Congress on Epilepsy (6° Congreso Latinoamericano de Epilepsia)
1 - 4 August 2010
|4th Migrating Course on Epilepsy
15 - 22 August 2010
Organized in cooperation between the Commission on European Affairs and EUREPA, the European Epilepsy Academy. These programs are clinically oriented and focused on the comprehensive aspects of diagnosis and treatment of epilepsy. This course is targeted to specialists at the second and third level of epilepsy care. More information and online application (deadline 1 February 2010) can be found at: http://www.epilepsy-academy.org or contact Petra Novotny, EUREPA at email@example.com.
12th European Conference on Epilepsy and Society
25 - 27 August 2010
| 8th AOEC
21 - 24 October 2010
Online registration and abstracts are now open.
For information e-mail firstname.lastname@example.org.
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This publication is made possible in part by an unrestricted educational grant from Pfizer Inc.