Epigraph Vol. 13 Issue 1, Winter 2011
Solomon (Nico) L Moshé
During the past year the League has continued its worldwide campaign aimed at improving epilepsy care by emphasizing education and research. At our Centenary Celebration in Budapest, we set an aggressive agenda in a broad strategic plan. Although it is still early, we have made good progress which is outlined in the article entitled: "The ILAE at the Threshold of Its Second Century: Year 1” (Epilepsia 52:185-87). Since the report was written in September 2010, here have been a number of additional achievements that are noteworthy.
• In November 2010 the League met with representatives of the African Chapters in Senegal (see the accompanying article), and the meeting resulted in the much anticipated formation of the Commission on African Affairs (CAA) which is now chaired by Dr Gallo Diop. The CAA will promote issues related to epilepsy in the Region, improve our educational agenda and work for solutions to the problems that are most pressing in Africa. The birth of the CAA is a critical step in achieving our ultimate goal of having active ILAE Chapters in all countries in Africa. We look with great anticipation to the great progress that our colleagues will bring to the cause of epilepsy in the League’s newest region.
• The League was one of the charter members invited to participate at the WHO-organized meeting entitled “Mental Health GAP Forum” held in Geneva on 7 October 2010. We wish to express our deepest appreciation to Dr Shekhar Saxena, Director of the Mental Health and Substance Abuse Department, for all his efforts in support of epileptology worldwide (see photo below).
• A landmark publication was the launch of the Euro GCAE Report in Porto in August 2010. This report outlines the status of epilepsy care within the European region and provides a common basis for working toward broad solutions to the many problems that vex our patients. Editorials and commentaries were published in major journals, and the report was widely disseminated to all our Chapters.
• Together with the IBE we have formed a joint Task Force to address issues relating the support of epilepsy care and research within the European community. Our goal is to enlighten health officials and ministers of countries comprising the European Union, as to how we can augment epilepsy research and provide improved care which is often lagging even in the more developed countries.
• The League recognized the urgency to develop a Task Force addressing the worldwide impact of epilepsy on tropical diseases. Dr Pierre Marie Preux, Professor of Epileptology and Head of the Clinical Research Unit at the University of Limoges, France, has been designated to lead this initiative.
• In December 2010, the League and Autism Speaks held a very constructive workshop under the expert guidance of Drs Roberto Tuchman and Andy Shih. We developed a very ambitious agenda aimed at scientific research synergies from a global perspective. Among the goals that were discussed was the identification of infants with seizures at risk for autism, and those with autism at risk for epilepsy; the identification of risk factors common to epilepsy-autism; and the development of treatment models behavioral and pharmacological in infants with epilepsy-autism (or at risk for autism). The group included representatives from ILAE, Autism Speaks, Citizens United for Research in Epilepsy (CURE), American Epilepsy Society, National Institute for Neurologic Disease and Stroke and the National Institute of Child Health and Development.
• A significant initiative that we will continue to pursue for the next three years is the preparation and publication of the US Institute of Medicine Report on Epilepsy. The League is one of the sponsoring partners, and we are represented by Drs Gary Mathern, and Edward Bertram. We are hopeful that this venture will enhance the delivery of care not only in the US but also worldwide.
• A report from our Latin American colleagues is in preparation, and will address issues affecting the Americas in collaboration with the Pan American Health Organization (PAHO). We are grateful to Dr Jorge Rodriguez, Senior Advisor on Mental Health of PAHO as well as to Dr Carlos Acevedo, Secretary General of IBE, and Dr Marco Tullio Medina, Vice President of ILAE, for their vigorous efforts. The authors sought and obtained the input from the North American Commission, and thus are creating a powerful document that will bring to the attention of various ministers and high officials the plight of people affected with epilepsy in the Western hemisphere. We anticipate that within the next few years we should begin to notice dramatic and unprecedented changes in healthcare policies in all Western hemisphere countries.
• We anticipate that the new Constitution of the League will be ratified by the General Assembly during the Rome International Congress this coming September. This will enable all the Regions “to have a voice” in assessing how the League conducts its affairs.
• During this past year we have held four Regional Congresses which have yielded an astounding success. It is indeed invigorating to witness the collective dedication and passion shared by all our Chapters’ members who participate actively in educational programs either as teachers or trainees, working from the ground up to provide services to people often with inadequate resources, striving to improve the healthcare system, and most importantly alleviate human suffering.
• In the year 2011 we will celebrate the 50th Anniversary of the IBE and the 75th Anniversary of the American Epilepsy Society. We congratulate both organizations for reaching these milestones, and look forward to a brighter future for people with epilepsy. As epilepsy has been a scourge for millennia, it is imperative that we continuously strive to develop more effective treatments with no side effects. I wish to reiterate how crucial it is to work together as a unified group representing all aspects of people with epilepsy, from professionals to lay people, and to raise awareness that epilepsy affects more than 50 million people, and is more common than multiple sclerosis, parkinson’s diseases, cerebral palsy, and muscular dystrophy combined. We are looking forward to a very productive year and fruitful collaborations.
Dr Margaret Chan, Director General of WHO, discussing with Dr Mike Glynn and Dr Solomon Moshé, issues related to epilepsy (circle). The arrow points to the Epilepsy Poster, describing the WHO-related activities. This photo was taken at the launch of the “Intervention Guide” at the World Health Organization “MHGAP Forum” in Geneva, Switzerland on 7 October 2010. Attendance included 22 member states, 11 ambassadors, WHO Collaborating Centers and other international organizations, including ILAE and IBE, which contributed their strategic guidance to the WHO on raising the priority given to mental health.
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