Photos and statements appear in alphabetical order.
Dear Colleagues, Dear Friends,
It is an honor to be nominated as a candidate to the ILAE Executive Committee.
In terms of administrative background, I serve currently as Chair of the ILAE Commission on European Affairs (CEA), which, thanks to all its members, is very active in several domains:
- Education, through an agenda of international courses, each supported by a bursary program: it was important to diversify the themes, from general epileptology, surgery, genetics, to pharmacology, while covering at best the vast geographical region, from the Baltic, through the Red, up to the Black Sea.
But, with a desire to dedicate parts of the European budget to extra-European activities, we provided continuous financial support to EUREPA activities, especially the distance education (VIREPA), “Train the Trainers”, or Portuguese and French-speaking courses. The next Executive Committee and CEA will have the important role of redefining the mission, statute and financial system of EUREPA, while continuing to capitalize on its unique experience as an educational agency.
- European Congresses, which have reached an outstanding scientific level, and are a major source of income to the ILAE, despite the current trend for lesser sponsorship. Similar success should be contemplated for all ILAE Regional Congresses, on the basis of strong scientific, geographic, but also economic preoccupations.
- Communication and partnership with more than 40 Chapters, through yearly Chapter Conventions (European Council), the motivation of sub-regional initiatives and synchronies, and through substantial financial supports, targeting primarily the less-advantaged countries.
- New domains, like establishing contact with the European Drug Agency on all aspects of AEDs introduction to the clinic, (revised EMEA guideline, http://www.emea.europa.eu/pdfs/human/ewp/056698endraft.pdf), investing in consensus actions on status epilepticus (Epilepsia 2008;49:1277-285), opening the concept of “rare” epileptic diseases, or like lobbying officially the EU authorities to promote funding for epilepsy research (Epilepsia 2009;50:571–583).
I hope that all this experience would be useful for serving at the global ILAE level, including collaborating with the WHO, with efficient teamwork around the new President, Nico Moshé, aiming at the best generation and use of financial resources.
Basically, I remain committed to my patients, my neurology department at La Salpêtrière Hospital, as well as to the different research fields that I coordinate in this center, on AED development, epilepsy genetics, correlates of seizure emergence, or neurophysiology of post-operative tissues.
I also believe that local experiences can be useful on a larger scale. In Paris, we are working to enhance collaboration, beyond administrative separations, between pediatric and adult teams. An important international objective could be to reinforce the continuity of high quality care from childhood to adulthood, as patients and families strongly wish. Translated into research opportunities, this unique situation across development and ages is a key asset in order to defend the place of Epileptology within the highly competitive environments of Neurology, Neuropediatry and Neurosciences.
I am therefore asking for your support in voting for me as an officer of the ILAE executive.
Professor at Paris University, INSERM-U739,
Neurology, Hopital La Salpêtrière
Esper A Cavalheiro
Let me first thank all who gave me their vote at the presidential election. Even if I was not elected, I much appreciated the support that was given to me. When I now present myself as a candidate for one of the other offices of the ILAE, I wish again to make quite sure that I do not consider myself as representing only one particular region. The ILAE is a global organization, and I have both profited in my career from the worldwide exchange of ideas and experiences, and made my own modest contribution to international epileptology — by my basic research on epileptogenesis, my work in the ILAE Commissions on Neurobiology and Education, my involvement in the lay organizations supporting patients with epilepsy (in Brazil and in the International Bureau for Epilepsy), and by my work for the improvement of research and networking for epilepsy in the developing world.
As a faculty member of the San Servolo advanced courses I was so impressed that I initiated the annual Latin American Summer Schools on Epilepsy which now, for the third time under my direction, have been instrumental in developing epilepsy education in Latin America. Consequently I have also been entrusted with running the permanent secretariat of the Latin American Epilepsy Academy. One of my priorities as a member of the ILAE Executive would be to use these experiences to further develop the educational agenda of our organization, with special emphasis on the needs of underserved countries and regions. I also would focus on the development of global networks for research with the participation of low economy countries. My background in the health politics of my own country and the international relations which resulted from it, e.g. with TWAS, the Academy of Sciences of the Developing World, give me unique opportunities to do this efficiently.
Esper A Cavalheiro
Athanasios Covanis, MD
ILAE’s primary aim is to improve quality of life to all persons with epilepsy throughout the world. In this respect ILAE is very proud. Throughout the years of different leaderships a great number of countries have created new Chapters and have joined the ILAE. Furthermore the partnership with IBE and World Health Organization (WHO) to bring epilepsy “out of shadows” has helped to bring to light the regional problems in the developing and developed world such as educational and financial resources allocated to epilepsy, the areas of treatment gap, and the social stigma. Today more than ever, time is more challenging and we should take this opportunity during the second century to fulfill ILAE’s efforts and dreams. To fulfill this it is necessary to continue the successful work of our predecessors and enlarge membership and our activities. Our aim will be to achieve a world where all people with epilepsy live in societies free of stigma, are properly diagnosed and treated and where matters related to epilepsy are dealt with equally without any discrimination. In order to do more for people with epilepsy across the world ILAE needs to generate more funds. By improving the economic status of ILAE, its political status will become more influential in pressing educational, training and research programs across the world through high quality Congresses and the world-recognized journal Epilepsia.
My primary aim within ILAE, if I am elected, will be to transfer knowledge to all societies at their own level and encourage the development of small or large units where people with epilepsy are properly cared for medically and socially, therefore reducing the existing treatment gap. Each region and country has unique problems and resources. For this we have to create a network of professionals and lay people throughout the world to put into action plans and ideas matched to the specific regions, in collaboration with IBE. These plans primarily will be based on ideas and suggestions coming from professionals and lay people from the region in question. All plans will be studied carefully and appropriately supported. We have to accumulate and combine suggestions worldwide and plan / act to each region according to their needs.
The absolute collaboration with IBE is necessary at National, Regional and Executive Board level. If I am elected, this collaboration will continue to be successful due to my previous posts held within the IBE Executive Committee.
I have dealt with epilepsy as a primary interest since 1976 and I have been involved with IBE since I took over the presidency of the Greek Association Against Epilepsy in the early 90s. Since 2001, I have held positions within the IBE of Vice President, Chair Eastern Mediterranean Task Force, Vice-Chair for Europe, Chair of Regional Chairs and Vice–Chair of the European Regional Executive Committee, President of the Greek ILAE and IBE Chapters, a member of the Management and Political Action Group of EUCARE, and currently Chair for the 9th European Congress on Epileptology for 2010.
My experience gained through holding these positions has given me the insight and knowledge of the workings of IBE and ILAE, which will help to achieve our goals.
Athanasios Covanis, MD
Child Neurologist with diplomas in Pediatrics, Neurology and Child Health
Head of the Neurology Department at the Children’s Hospital ‘Aghia Sophia’, Athens
firstname.lastname@example.org and email@example.com
Alla Guekht, MD, PhD
I feel honored to be nominated to serve on the Executive Committee (EC) in 2009-2013. I regard the EC as an active and productive international body working as a team to meet the needs of people with epilepsy around the world and fully support strategies outlined by the President-Elect, Prof S Moshé.
I hope to be able to contribute to the implementation of these goals based on the background of my professional expertise and the experience gained while being involved in many initiatives and events in ILAE and collaboration with WHO, WFN, and EFNS.
With a background in general neurology, I have been taking care of patients with epilepsy for about 20 years. Currently I am Doctor of Medical Sciences, Professor of Neurology of the Russian State Medical University. My primary areas of research are epilepsy in the elderly/after stroke, epidemiology (honored by Bruce S. Schoenberg International Award and lecture in Neuroepidemiology), and quality of life. I have the privilege to be a member of the Editorial Boards of Epilepsia, Epileptic Disorders, and Journal of Neurological Sciences, as well as the author of over 100 papers in peer-reviewed journals, seven books, including the National Guidelines and Manual in Neurology. In addition I have been an invited speaker at many Epilepsy Congresses and epilepsy sessions at multidisciplinary Congresses. I was fortunate to mentor young doctors in their training and research, with 20 completed PhD and doctoral dissertations.
For about 15 years I have been involved in activities of the ILAE, with eight years of work in the Commission of European Affairs. Since 2005, I have served as Chair of the European Advisory Council with 43 Chapters. It gave me experience in the development of successful collaborative initiatives and adjustment of the strategic plans to the particular needs and priorities of each Chapter. The concept of Chapter Conventions was further developed with the creation of a Forum with productive discussion of important aspects of epilepsy care throughout Europe. I had the privilege to serve in the Organizing and / or Scientific Advisory Committees of several European Congresses.
Considering education as a major commitment, I am one of the founders and Director of the Migrating Course of Epilepsy, targeted to specialists at the second / third level of epilepsy care, and was honored to contribute to San Servolo and Baltic Sea Summer Schools, Eilat Course, as well as to several regional courses.
I came from a country situated geographically in Europe and Asia with many regions quite different in their ethnic, cultural, economic, and historical background. As a Secretary-General of my Chapter I actively participated in development of epilepsy care, managing with a range (from quite appropriate to very limited) of medical and financial resources. This experience was enriched by chairing a sub-commission for Central and Eastern Europe with special attention to the particular needs of different Chapters and full respect for their priorities.
The increasing burden of epilepsy worldwide, coupled with the dismal economic situation, pose unprecedented challenges to the ILAE in the next term. However, difficult times foster innovation and cooperation. If nominated and elected I will do my best to follow and enrich ILAE traditions and to promote:
- education (with a focus on an integrated system of on-site and distant comprehensive educational activities);
- research (especially considering collaborative research projects);
- optimization of epilepsy care and providing comprehensive epileptology in countries with different level of resources; and
- improving the lines of communication and strengthening cooperation between epilepsy professionals all over the world.
Satish Jain, MD, DM, FRCP
I write to seek the support of all ILAE Chapters for the ongoing elections. It is very simple to seek support but quite difficult to justify it. Let me make an attempt!
Why should you support me? I come from a developing country. Nearly 75 percent of all people with epilepsy currently live in developing economies, particularly in Asia and Africa. Access to a large pool of epilepsy patients in India honed my clinical skills and provided me a strong foundation for research on various aspects of epilepsy. I have worked in both India and the US. My experience tells me that in developing countries, a disorder like epilepsy is not just a medical challenge. It is surrounded by a host of other implications which are just as difficult to cure, if not more — lack of resources, illiteracy, myths about epilepsy, societal stigma and poverty. The very process of providing medical care in the developing world therefore becomes a multi-dimensional challenge forcing you to stretch your own abilities. As a first initiative of its kind in the developing world — as Convenor of the Expert Group of the Indian Epilepsy Society — I drafted and released the Guidelines for Management of Epilepsy in India (GEMIND) on October 21, 2008.
Today we live in an era of tremendous opportunities coupled with financial uncertainties. The League’s financial position is perhaps already influenced by the global economic recession. The ILAE has to progress and continue its ever increasing activities, particularly in developing countries. Life in the developing world often compels one to survive and progress even in the face of limited resources. I will try and use this experience gained in the ‘disadvantaged’ part of the world to the League’s ‘advantage’. In supporting me, you support clinical experience, administrative ability and sheer hard work. As a future officer of the ILAE, I hope to fulfill any responsibility entrusted upon me with honesty, innovation and enthusiasm. Your support for my candidacy is the operative prerequisite to fulfilling my hope and desire to serve the ILAE as an officer.
Looking forward to working with and for you.
Satish Jain, MD, DM, FRCP
Neurologist & Epileptologist, Director of Indian Epilepsy Centre at New Delhi (India). Organized the 18th International Epilepsy Congress (1989) and 3rd Asian-Oceanian Epilepsy Congress (2000) in New Delhi. Received the International Ambassador for Epilepsy Award (2001). Actively associated with the ILAE-IBE-WHO Global Campaign Against Epilepsy. Member of the Commission for Asian Oceanian Affairs (2001 – Current), Commission on Search for Epilepsy Genes (2005 – Current), and Asian Epilepsy Academy (ASEPA) (2003 – 2007). Secretary General of the Indian Epilepsy Society (2002 – Current). On the Editorial Board of Epilepsia. E-mail: firstname.lastname@example.org
Reetta Kälviäinen, MD
Our common vision in ILAE is to “achieve a world in which no person’s life is limited with epilepsy”. Valuable groundbreaking work has been done to achieve this goal during the 100 years since ILAE was founded in 1909. However, we are still facing many of the same challenges especially if we think of the great silence surrounding epilepsy compared to many other diseases. Therefore I suggest it’s time for change in ILAE toward a more open and active role in the Society.
If I am elected I would emphasize the following points in my work:
- We should be able to elevate the status of epileptology among professionals in order to recruit new, talented people to achieve scientific progress and to better take care of our patients in future.
- We need to change the image of ILAE to an open, easily approachable and visible worldwide organization, where everyone’s opinion is respected.
- We need to continue to develop consensus guidelines for appropriate diagnostic and therapeutic standards, which can be used world-wide. With these standards we can work toward achieving worldwide access to appropriate medical care (accurate diagnoses and effective medical treatment) in collaboration with WHO and local and regional decision makers and by supporting local Chapters.
- We need to work in close collaboration with IBE and together disseminate the principles of appropriate medical care of epilepsy to the patients and to the lay people worldwide.
- We need to create networks with other organizations in neurosciences in order to promote epileptology and appropriate care of epilepsy.
- We need to create new forms of education in addition (or sometimes instead) of general Congresses and courses after carefully evaluating the real needs.
- We need to come out of the shadows ourselves to the media and actively promote scientific work and principles of medical care of epilepsy to the public.
Qualifications: I work as the Director of Kuopio Epilepsy Center as well as Docent (Associate Professor) and Project Leader of Clinical Epilepsy Research at the Department of Neurology at the Kuopio University in Kuopio, Finland. My special research interest is clinical epileptology including the prognostic factors of newly diagnosed epilepsy, the possible progressive nature of the epileptic process as well as cognitive functions and neuroimaging in epilepsy. I am also Director of the Epilepsy Surgery Program of the Kuopio University Hospital (both for adults and children). I am the President of the Finnish Chapter of IBE and Secretary-General of the Finnish Chapter of ILAE. In 2001-2005 I was the member and from 2007 the Secretary of the ILAE Commission for Therapeutic Strategies. I have participated in the preparation of the ILAE therapeutic guidelines. I was Chairperson of the Scientific Advisory Committee of the European Congress of Epileptology in Helsinki 2006. My husband is a pediatric neurologist and epileptologist who understands my work and supports it fully.
Reetta Kälviäinen, MD
Neurologist, Director of Epilepsy Center, Secretary General of ILAE Chapter in Finland
Marco Tulio Medina, MD
I am very pleased and honored to have been selected as a candidate to the Executive Committee of the International League Against Epilepsy (ILAE).
During the last eight years I served as a member of the ILAE Commission on Latin American Affairs, and I am currently the Chairman of this Regional Commission. In the last four years with my colleagues in Latin America, we founded the Latin American Academy of Epilepsy (ALADE) and I was honored to be elected the first President. We have supported the education and research activities in our region as well as working with the ILAE Epilepsy Care Commission.
Based on this teamwork, Latin America took a big step forward, becoming a mature Region: with periodic regional epilepsy Congresses, the Latin American Summer School, the establishment of ALADE, establishment of new sub-commissions, like the Epilepsy Surgery sub-commission, and the collaboration with the ILAE North American Commission.
I am professor of Neurology and Epileptology at the National Autonomous University of Honduras and I have served as Chairman of the Education Subcommittee of the World Federation of Neurology. I performed my epileptology training at the Saint Paul Center, Marseilles, France, under the direction of Charlotte Dravet and colleagues, and later at the University of California, Los Angeles (UCLA). After I came back to my country we founded the ILAE Honduras Chapter, and the Honduras Neurology Training Program at the National Autonomous University of Honduras, the first pilot educational program of the World Federation of Neurology. During the last ten years we have improved epilepsy and neurological care in Honduras, working to reduce the incidence of epilepsy due to neurocysticercosis in rural areas of Honduras. As Professor and Director of the Neurology Training Program, we started an international collaborative research program with UCLA, Mexico, Japan, and Central and South America on the search for the Epilepsy Genes, epidemiology of the Epilepsies, and Neurocysticercosis. We have co-discovered the EFHC1 Juvenile Myoclonic Epilepsy gene and the GABRB3 Childhood Absence epilepsy gene, and we established a community epilepsy intervention program in Salama, Honduras. In the last ten years I also worked with the Los Angeles Epilepsy Foundation.
I strongly believe that the ILAE is a real international organization, and the participation of all their members is fundamental to assure a global perspective.
I would like to work with the next Executive Committee and its elected President Nico Moshé on several issues: 1) Promoting the Epilepsy Global Campaign, working mainly on the preventable epilepsies (such as Neurocysticercosis), Epilepsy treatment gap, Epilepsy Surgery gap, etc; 2) Improving epilepsy education worldwide, supporting the Regional Epilepsy Academies; and 3) Improving research in basic sciences, epidemiology and clinical research.
I believe that together we can improve the Epilepsy care worldwide and I can work on this important goal. I am asking for your support in voting for me as an officer of the ILAE Executive.
Prof Marco Tulio Medina
Professor of Neurology and Epileptology, National Autonomous University of Honduras
Emilio Perruca, MD, PhD
I thank all ILAE Chapters that nominated me for re-election to the ILAE Executive Board. This note briefly outlines my biography and my vision for the future of ILAE.
I obtained a medical degree and a specialization in neurology at the University of Pavia, Italy, and a PhD in clinical pharmacology at the University of London. Currently, I am professor of pharmacology at the University of Pavia. For the past two decades, I contributed to the ILAE by serving in various Commissions (Outcome Assessment, European Affairs and Therapeutic Strategies) and, currently, as First Vice President. I deeply believe that the ILAE can have a crucial role in pursuing our goal of a world where no person's life will be limited by the consequences of having epilepsy. The following are areas in which I feel we should especially concentrate:
Expand services to member Chapters and individuals. Improved communication with Chapters is essential in determining which specific services should be provided. We also need to enhance the operational capabilities of ILAE regions. The proposed constitutional amendment, which I contributed to, will go in this direction by including the elected Regional Commission Chairs in the ILAE Executive.
Foster initiatives in education, training and research. During the current term, I was given the task of organizing the Faculty of 1,000, a Web-based database of the many colleagues who contribute to ILAE’s educational agenda. Improving knowledge and training programs should be a primary goal of ILAE. Efforts should be stepped up to identify and mentor the next generation of ILAE leaders, and involve them in Commissions and Task Forces. ILAE should also liaise with funding organizations to ensure that epilepsy becomes a priority for future research.
Improve epilepsy care in the world regardless of resources. The ILAE does not have the resources to conduct large programs alone, but it is ideally placed to stimulate and coordinate contributions from many organizations active in income-restricted countries. One example is the recent signing of a partnership agreement between ILAE and BasicNeeds, a non-governmental organization, to develop a program to reduce the treatment gap in Ghana. These initiatives can be expanded, taking advantage of our special relationship with IBE and WHO.
Modernization of the organization and financial structure of ILAE. Accomplishing our ambitious goals in education and epilepsy care programs will require considerable efforts and resources. The ILAE should optimize its organizational structure and diversify its sources of income, liaising with Chapters and other partners to develop projects for which funding can be sought from a variety of sources.
During the last four years, I had the privilege of working in close association with Nico Moshé, our President-Elect. I know that we share a common vision on many of these objectives. I am also aware that there are many motivated colleagues worldwide who are eager to contribute to these programs. By working together, a lot can be achieved.
Emilio Perruca, MD, PhD
Chong-Tin Tan, MD
I am a graduate from the University of Melbourne, and am currently Professor of Neurology, University of Malaya, Malaysia. My primary area of clinical activity is general neurology, with special interest in epilepsy. I have helped to initiate and build many neurological institutions in Asia over the years. My involvement with the ILAE started in 2001 as past Chair of the Commission on Asian and Oceanian Affairs (CAOA), and Chair of Asian Epilepsy Academy (ASEPA). During these seven years, the Asian region has seen tremendous growth in the development of epilepsy, both in breadth and depth. The Asian and Oceanian Epilepsy Congresses (AOEC) are now well established with attendance approaching 2000 and with regular publication of the proceedings. ASEPA has been working continuously to improve epilepsy care by emphasizing the importance of specialized epilepsy care and by creating practice standards for the region. To achieve these goals ASEPA organizes about ten teaching courses yearly in various parts of Asia as well as conducts EEG certification examination. This examination is being increasingly accepted as a regional standard and has helped to promote better EEG reading in many Asian countries. A number of fellowships are being offered yearly to train aspiring epileptologists from the developing countries. By 2009, the number of ILAE Chapters in the Asia and Oceanian Region is expected to double to eighteen. These are of course fruits of dedicated joint efforts by many people. Since 2006, when I started my current term as Vice President of the ILAE, I have worked to strengthen these activities.
I believe the key missions of ILAE are to promote development of epilepsy science and to empower epilepsy care professionals everywhere in the world. It is important that the ILAE Executive Committee have broad representation of people from diverse backgrounds. I believe I can use my experience of developing and supporting improved epilepsy care at the grass roots level in Asia, including some countries where there is the greatest need for epilepsy education, to continue to contribute meaningfully to the international epilepsy movement. I therefore humbly seek your support in the coming Executive Committee election so that I may continue to help with this important endeavor.
Prof Chong-Tin Tan
University Malaya Medical Center
Kuala Lumpur, Malaysia
Prof Tatsuya Tanaka
Dear Colleagues of ILAE,
It is a great honor to be nominated as a candidate in the election of officers for the Executive Committee of the ILAE.
I started to develop an international perspective during my training in epileptology which started in 1973 under Professor Robert Naquet in France, when I studied basic research using techniques such as kindling and kainic acid-induced seizures. My international experience continued under Professor Andre Olivier at the Montreal Neurological Institute, where I acquired clinical experience in epilepsy surgery. I put the tools that I learned abroad to good use when I returned to Japan and continued my clinical and research career as an epileptologist and neurosurgeon. In 2005, I was the first neurosurgeon who was elected President of the Japan Epilepsy Society (JES). During my three-year term, the JES continued to grow to a membership of over 1,800 doctors, the second largest Chapter of ILAE after the United States.
My basic research background has been extremely important to my understanding of the pathophysiology of epilepsy, and I have taken what I have learned about central neuronal networks and used it to develop therapeutic strategies for my patients. For this reason I strongly support the emphasis that the ILAE has placed on translational research to move laboratory research findings to clinical practice.
For the next four years and beyond one of the great challenges and opportunities will be the training of new epileptologists in underserved areas. Our experience with the JES scholarship system may provide a model for meeting this challenge. The JES is receiving young epilepsy clinicians and researchers from the Asian and Oceanian Region to receive training in Japan. At the moment the number is small and the training facilities are limited, but we will expand the scholarship system and increase the number of facilities that can accept trainees and train them well.
The international epilepsy community faces other challenges. Stigma surrounding epilepsy continues to exist in many places of the world. Educational campaigns based on a strong collaboration between ILAE and IBE is necessary to break down the barriers faced by our patients. Another challenge remains the significant regional disparity that persists in epilepsy care despite the 100-year history of ILAE. No worldwide international conference of ILAE has ever been convened on the African continent. I would like to work to remedy this problem in the next four years. Finally, there is a problem in the dissemination of information about epilepsy. There are many regions in the world that cannot afford access to journals. The electric journal Epilepsy & Seizure launched by JES is an open access journal which can be viewed by anyone. We hope that this approach can serve as a model to supply information to many underserved areas.
If elected as an officer of the Executive Committee, I would devote all my efforts to assist the President Elect Dr Solomon Moshé, who has proposed a challenging set of goals for us to meet. Again, I am greatly honored by this nomination that I have received. I would greatly appreciate the opportunity to help the League achieve its important goals.
President, Japan Epilepsy Society
Professor, Neurosurgery, Asahikawa Medical School, Japan
Eugen Trinka, MD, MSc
Dr Eugen Trinka is head of the Epilepsy Service and the Monitoring Unit at the Department of Neurology, Medical University Innsbruck (Austria). He received his MD from the University Vienna (Austria) in 1990, and continued his training in Neurology and Psychiatry at the University Hospital Salzburg, Christian Doppler Clinic before being appointed as Senior Neurologist in 1997. After a fellowship at the Montreal Neurological Institute and Hospital, McGill University (Quebec, Canada) working with Professor F Andermann and F Dubeau he moved to the Medical University Innsbruck, Dept Of Neurology where he became Deputy Chief of the EEG Laboratory and Department of Seizure Disorders in 1999. He received his venia legendi in 2003 and was appointed as Associate Professor for Neurology at the Medical University Innsbruck. In 2004 he became Chief of the Epilepsy Service and EEG Laboratory of the Dept of Neurology, Innsbruck. He also built up the comprehensive Innsbruck Epilepsy Surgery (INES) program which he has chaired since 2000. He further received a master's degree (MSc) in heath sciences from the Universty for Medical Informatics Health Sciences and Public Heath Hall in Tyrol (UMIT) in 2005.
Dr Trinka’s areas of scientific interest are in epileptology (epidemiology, prognosis, status epilepticus, pathophysiology and epilepsy surgery); clinical neurophysiology (electroencephalography and event-related potentials); and functional neuroimaging (fMRI and SPECT). He is a member the editorial board of Epilepsia, Epileptic Disorders, Zeitschrift für Epileptologie, Therapeutic Advances in Neurological Disorders and Arzneimittelsicherheit and Editor-in-Chief of the Mitteilungen der Österreichischen Sekt Der ILAE. In addition he acts as a reviewer for several top journals. Dr Trinka is actively involved in the Austrian Chapter of the ILAE where he served as the 1st Secretary from 2003-2008 and is currently 2nd Secretary. He is also President of the Austrian Society for Clinical Neurophysiology since 2007 as well as a corresponding member of the American Epilepsy Society and Austrian Neurological Society. Dr Trinka lectures on epilepsy monitoring and clinical epileptology, and on neurology and neurophysiology, at the Medical University Innsbruck. He was the recipient of the Herbert Reisner Prize for Epileptology, in 2000, and the Wilfried Haslauer Prize for Neuroscience, in 1995.
Eugen Trinka, MD, MSc
Samuel Wiebe, MD
I am honored to have been selected as a candidate to the Executive Committee of the International League Against Epilepsy (ILAE). My qualifications to serve in the ILAE Executive encompass clinical, academic and administrative aspects.
As an epileptologist, I have extensive clinical experience in the medical and surgical management of patients with epilepsy, including the complex epilepsies. Academically, I have made contributions pertaining to epilepsy in the areas of randomized surgical trials, quality of life, outcome assessment, epidemiology, research methodology, and evidence-based medicine. I have mentored numerous clinical and research trainees in epilepsy and neurology. My administrative experience includes the leadership of the Calgary Epilepsy Program, the Headship of the Division of Neurology at the University of Calgary, and the directorship of the Clinical Research Centre for the Faculty of Medicine, University of Calgary. I also launched and currently lead the Canadian Epilepsy Surgery Study Group, a research-based consortium which is affiliated with the Canadian League Against Epilepsy.
Of more immediate relevance to the position of officer of the ILAE is my experience in this organization. During the last ten years I have been actively involved in a variety of national and international activities of the ILAE. In Canada, I have served as President-Elect of the CLAE from 2001 to 2003, and then as President from 2003 to 2006. Internationally, I currently serve as Secretary of the ILAE Commission on Epilepsy Care, which is in charge of the activities of the Global Campaign Against Epilepsy, and I chair the ILAE Regional Commission for North America. I have also served as member of several ILAE Task Forces, including the Commission on Health Care Policy – Economics Subcommittee, and Task Forces on Quality of Life Measurement, and Definition of Intractable epilepsy.
During the last three years, through my role as Chair of the Regional North American Commission, I have had the opportunity to lead the implementation of highly successful collaborative initiatives in education and in epilepsy care involving partnerships among Canada, the USA, Central America, Latin America and the Caribbean.
I firmly believe that through inclusiveness and broad representation, the ILAE can accomplish its goal of improving the limitations currently faced by patients with epilepsy worldwide. I fully support the vision for the ILAE of the President-Elect, Dr Nico Moshé. This vision emphasizes fostering input from and serving the needs of the broad constituency of the ILAE, representing all health care professionals in epilepsy, developing and strengthening solid international collaborations in education, mentorship and research, and developing the next generation of ILAE leaders.
I believe that I can contribute meaningfully to the ILAE team that will lead these efforts in the next four years. Therefore, I ask for your support in voting for me as an officer of the ILAE Executive.
Samuel Wiebe, MD, MSc (Epidemiol), FRCPC
Calgary, Alberta, CANADA
In the second 2008 issue of Epigraph, I described several initiatives that the ILAE is undertaking to promote epilepsy care in Africa. One of the most important is a comprehensive project to be implemented in Ghana jointly with BasicNeeds, a British non-governmental organization with whom the ILAE has recently signed a Memorandum of Understanding. The project is intended to assess the size of the treatment gap in the country and to reduce this gap through improved access to epilepsy services, improved medical management and sustained livelihood initiatives for affected people and their families. As outlined below, a number of steps toward developing this program have been taken over the last few months.
In April 2008, Giuliano Avanzini, the ILAE Chair of the Global Campaign, and I travelled to Ghana for a seven-day visit. The purpose was to become acquainted with local key professionals involved in the care of people with epilepsy, to understand the health care system in the country and to identify areas where ILAE could assist in improving services and addressing the medical and social needs of people with epilepsy. During our visit we had the privilege of meeting with Dr A Dwuma Odoom, Deputy Minister of Health, Dr E Sorey, General Director of Ghana Health Services, Dr A Osei, Chief Psychiatrist for Ghana Health Services, and several professionals directly involved in the care of people with epilepsy, including Drs S Ohene and A Akpalu, who have been working toward establishing an ILAE Chapter in Ghana. Thanks to the invaluable assistance of Mr Peter Yaro, coordinator for BasicNeeds activities in Ghana, we had the opportunity to visit not only major medical centers, but also community clinics, poor city neighborhoods and rural villages where we could interact personally with epilepsy patients and their families. Throughout our visit, we were impressed by the high awareness of health officials about the medical and social problems associated with epilepsy, and by their interest in collaborating with ILAE and supporting initiatives to reduce stigma and improve quality of care.
Although there are no data on the prevalence of epilepsy in Ghana, there is consensus among local health personnel that epilepsy is a major problem not only in terms of medical and social burden but also in terms of epidemiological dimension. The care of people with epilepsy in Ghana is almost entirely under the responsibility of psychiatrists, partly because the boundaries between psychiatry and epilepsy are blurred in the traditional culture, and partly because the local health system favors the channeling of people with epilepsy to psychiatric services. Medical practitioners and health workers are fully aware of the distinction between epilepsy and mental disease. However, they have not encouraged a different approach to the care of these conditions, partly because people with epilepsy and people with mental disorders share similar suffering with respect to stigma and discrimination and partly because an integrated approach to both conditions allows people with epilepsy to benefit from significant resources which have been allocated by Ghana Health Services to psychiatric care. These include the establishment of dedicated health centers and personnel, and a provision where all patients registered at psychiatric centers receive free medical care, including free medications. In spite of this, the treatment gap is likely to be considerable, because many people with epilepsy are unaware of the availability of these services and because the widespread prevalence of stigma discourages affected persons from seeking help. At present, the treatment gap is largely filled by traditional healers.
Despite the availability of many community care clinics throughout the country, Ghana suffers from a shortage of medical specialists, which is aggravated by a continuous brain drain as many professionals emigrate to wealthier countries. This implies that the care of people with epilepsy rests primarily on general practitioners, assistant medical officers (health personnel that support the activities of physicians in rural areas) and a network of psychiatric nurses. Health care is particularly challenging in rural areas, which host the majority of the population. Although antiepileptic drugs are provided free of charge to patients attending psychiatric health centers, there are frequent shortages of medications. Availability of laboratory services, such as EEG and neuroimaging equipment, is extremely restricted.
BasicNeeds has been active in Ghana for several years and it has taken many actions to improve the lives of people with epilepsy in the country. The organization’s primary objective is to give voice to affected persons and to support initiatives that address specific medical and social needs. BasicNeeds’ main strategy is to liaise with national, regional and community-level health authorities, to provide complementary services which address shortcomings in the health system, and to provide feedback to authorities on their experience in order to stimulate an improved quality of health care. These activities also involve reaching out to neglected communities to fight stigma and discrimination and to inform people about existing medical and social services. BasicNeeds also supports the health care system through (i) direct and indirect support to medical and nursing personnel, including transportation to health clinics in rural areas; (ii) making bulk purchases of medications to cover recurrent shortages in the distribution system; (iii) providing funding for infrastructure, such as the construction or upgrade of community clinics; and (iv) liaising with local authorities and non-governmental agencies to organize the professional training of people with epilepsy and facilitate their full integration into society and restitution to productive activities. This may include the granting of microloans to start small businesses. BasicNeeds, however, is not a medical organization and they rely on collaboration with government health officials for interventions related to clinical care.
Based on this background, and a well established line of communication between ILAE and BasicNeeds, it has become increasingly clear that the two organizations are optimally placed to provide complementary and synergistic contributions to reduce the treatment gap for people with epilepsy in Ghana. Strengths of BasicNeeds include a strong social values and livelihoods approach, availability of a network of dedicated personnel locally, an established collaboration with health sector leaders and consumer groups in the country, and experience in fundraising for initiatives in Africa. The ILAE complements these assets by providing top-level medical expertise in epilepsy, a network of motivated professionals, an established experience with demonstration projects run in collaboration with IBE and WHO through the Global Campaign, and willingness to assist with partial funding. This has led to the development of an ambitious six-year program, to be carried out in two phases.
The first phase will focus on training of health care workers on a national scale. This is important because the primary deliverers of health care to people with epilepsy in Ghana (general practitioners and community psychiatric nurses) have very limited expertise in epileptology. Preparations for this are already underway, with the organization of interactive courses that will target motivated physicians and nurses from all regions of Ghana, with facilitated participation from personnel working in Northern, Upper West, Upper East and Greater Accra Regions, which are currently benefiting from the social integration programs run by BasicNeeds. The courses will use a train-the trainer model, whereby attendees are expected to be subsequently involved in directing the training of other health personnel in their geographical area. The first events are scheduled to take place in the first two weeks of August 2009 and will include an intensive course for general practitioners in Accra and a course for community psychiatric nurses and assistant medical officers in Tamale. These courses will take into account the peculiarities of epilepsy care in Ghana, ie the differential diagnosis of epilepsy with minimal resources, recognition of treatable causes, psychiatric issues in epilepsy, basic management principles, and the optimization of health records. The main purposes are to make health personnel more aware of diagnostic issues, to give them greater skills in communicating to patients and families what epilepsy is and how it should be treated, and to provide them with improved abilities in choosing and using medications and in keeping records of people under their care. The course will also address epidemiological methods, in preparation for a demonstration project to be carried out subsequently in the country. The faculty will include volunteers chosen among the ILAE Faculty of 1,000, as well as local neurologists. Funding for the first phase of the project is already secured through direct support from ILAE and BasicNeeds and educational grants provided by a group of pharmaceutical industries. Local health authorities have been extremely supportive and will be involved in the selection of participants, in providing allowances to course attendees and in assisting with logistics and infrastructure.
The second phase will involve further training events at regional and sub-regional levels, to provide knowledge and skills to health personnel who did not take part in the initial courses, and to target groups of community workers and traditional healers with specific programs. In parallel, an epidemiological study will be conducted to determine the prevalence of epilepsy in representative districts as well as the size of the treatment gap, and to establish programs to improve access to care and social support services. Planned interventions, to be conducted in partnership with BasicNeeds and Ghana Health Services, include (i) enlisting the collaboration of health professional and psychiatric nurses in reaching out to people with epilepsy not yet enrolled in BasicNeeds programs; (ii) upgrading the quality of existing medical records and establishing initiatives to ensure appropriate follow-up of people with epilepsy; (iii) liaising with local and international organizations to ensure the continuous and cost-efficient supply of high quality medications; (iv) providing vocational training in subsistence agriculture and other areas to adults with epilepsy through partner organizations; (v) enabling access to micro-loans for people with epilepsy; (vi) mentoring of children with epilepsy by community health workers to ensure their attendance in primary school; (vii) encouraging the participation of people with epilepsy in existing and new self-help groups. Follow-up surveys are envisaged after three and six years to determine the impact of these initiatives.
The ultimate objectives can be summarized in terms of achievements in four key areas:
- Knowledge – Data on the prevalence of epilepsy, its causes, social consequences and unmet socio-economic and medical needs in different regions of Ghana;
- Improved medical management – At least 10,000 people with epilepsy in the regions of Ghana covered by the BasicNeeds programs receiving treatment each year;
- Improved health status – At least 50% of adults and children with epilepsy registered in the program being free from seizures, thanks to sustainable access to medication and qualified professionals;
- Poverty reduction – At least 25% of adults with epilepsy earning an income; 50% of adults with epilepsy in non-remunerated productive work; 70% of children with epilepsy in school.
- Social integration – 30 user groups of people with epilepsy, are formed and actively self-advocating.
These developments will be surely facilitated by the establishment of a Ghana ILAE Chapter, which is virtually completed, and, hopefully, by involvement of IBE and WHO in this program as part of a future Global Campaign initiative.
1st Vice President, ILAE and Coordinator for ILAE activities in Africa