Epilepsy News Around the World
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The idea of Therapeutic Patient Education (TPE) in France takes its roots in a desire of changing the approach to epilepsy care. Development of TPE started from the difficulties that patients and health care professionals are facing when trying to understand the objectives of Epilepsy treatments, often prescribed at the end of a very short visit. More than just counting seizures, prescribing drugs or discussing surgery, other individual factors (mood, behavior, self esteem), specific to each patient should be takeninto account. Indeed, teaching is most efficient with the involvement of the person the message is addressed to so that the patient can fully be part of the process… Read "Cahier" special issue (Français) | Summary (English)
Report: Epilepsy Research Priorities in Europe
The European Forum on Epilepsy Research (ERF2013) took place in Dublin from May 26-29, 2013. Its objective was to provide a platform on how to improve the lives of persons with epilepsy in Europe by influencing the future political agenda of the EU.
The ERF 2013 defined objectives and milestones for the epilepsy community 1) how to strengthen epilepsy research, 2) how to reduce the treatment gap, and 3) how to reduce the burden and stigma of epilepsy.
This joint declaration of the Japanese Epilepsy Society (JES) and the Japanese Bureau for Epilepsy (JEA) was prepared with hopes that it will be helpful for the improvement of the circumstance of people with epilepsy, not only in Japan but also over the world.
2013 PAHO Report
The Report on Epilepsy in Latin America and the Caribbean (2013) prepared by the Pan American Health Organization (PAHO/WHO) with the support of the International League against Epilepsy and the International Bureau for Epilepsy is now available.
EpiNet (www.epinet.co.nz), an international collaborative clinical epilepsy research project endorsed by the New Zealand Chapter, continues to seek participation from ILAE chapter members. Current studies include "What is a seizure," which is an online study designed to determine how consistently physicians interpret case histories. It involves 32 case histories with different clinical presentations. Everyone who completes the 32 cases before the end of March 2014 will go into the draw to win a holiday of a lifetime in New Zealand.
EpiNet comprises a secure patient database, into which doctors can enter details on any person with epilepsy. It can be used by doctors from any country, provided they get approval from their IRB or other relevant authority. Currently, there are over 5,000 patients in the EpiNet database. Patients have been registered from 20 countries. The platform has been created to facilitate investigator-led research, and in particular to perform simple, multi-centre, pragmatic randomised controlled trials.
Second epilepsy clinic created in Haiti
The Clinique d’Épilepsie de Port-Au-Prince (CLIDEP), which opened its doors in 2008 with the help of the North American Commission of the ILAE now has a secondary site in rural Haiti.
With the help of the Rotary Foundation, the North American Commission was able to obtain a vehicle to perform on a bi-monthly basis mobile clinics in the region of the Central Plateau, more precisely in the cities of Saint-Marc and Cange. … more
Call for nominations for the 2015 Michael Prize
The Michael Prize is one of the most highly regarded international awards for the best contribution to scientific and clinical research which promote further developments in epileptology. Awarded biennially, it is specially designed to attract scientists not older than 45 years of age. Submission deadline: 31 December, 2014.
EU Health Commissioner Tonio Borg Speaks at the launch of the 4th European Epilepsy Day
European Parliament - Strasbourg, 4 February 2014
IBE and ILAE were honoured to have EU Commissioner Tonio Borg launch European Epilepsy Day 2014 at a reception in the European Parliament in Strasbourg on 4th February.
European Union Commission Website: http://ec.europa.eu/commission_2010-2014/borg/index_en.htm
Changing name of epilepsy in Korea; cerebroelectric disorder (noi-jeon-jeung, 뇌전증,腦電症)
Heung Dong Kim,,
Hoon-Chul Kang, Sang Ahm Lee, Kyun Huh, Byung-In Lee
Public misconception of epilepsy may lead to significant stigma to the disease itself, thereby causing impaired quality of life in people with epilepsy. Traditionally, epilepsy has been considered to be the consequence of evanescent spiritual forces, and even demonic possession (in many countries). The names of epilepsy in some East Asian countries originated from China, and include madness in their meaning. We recently changed the Korean name of epilepsy, gan-jil (간질, 癎疾: a crazy, convulsive disease having meaning similar to 癲癎), to a neutral and scientifically explainable name: noi-jeon-jeung (뇌전증; 腦電症; cerebroelectric disorder). We expect that changing the stigmatized name of epilepsy to a neutral and scientific term with the meaning of cerebroelectric disorder will reduce the social stigma by understanding of epilepsy as one of the neurologic disorders.
John M. Freeman, MD, an internationally renowned Johns Hopkins pediatric neurologist and medical ethicist whose iconoclastic questioning of established medical practices revolutionized the treatment of pediatric epilepsy and advanced the development of modern biomedical ethics, died on Friday, Jan. 3, 2014 of cardiovascular disease. He was 80.
LD and Epilepsy Review
Two articles approach areas of great importance in care delivery; two others approach common clinic issues.
New Award: Epilepsy Innovation Seal of Excellence - Application deadline 21 August, 2013
The Epilepsy Foundation, a national organization dedicated to serving all people with seizures, launched the Epilepsy Innovation Seal of Excellence (SEAL), an award that recognizes groundbreaking and innovative product development programs deemed by the Foundation as deserving of significant and urgent support. The launch of the SEAL is part of the Foundation’s strategic mandate to recognize critical advancements in the field of epilepsy. The SEAL is designed to facilitate access to funding and resources that will carry the recipient’s work through proof of concept and beyond, which typically costs from $1 million to $5 million dollars.
Professor Shunsuke Ohtahara passed away early in the morning of March 16, 2013, at the age of 83. He was well known in the academic world for the disease that he first described and which was named after him: Ohtahara syndrome.
See tribute by Prof Ohtsuka and photographs.
The epilepsy and neurology communities at large mourn the loss of our colleague, Dr. Eli S. Goldensohn who passed away on March 22, 2013 at the age of 98. During his long career, he was Professor of Neurology at the College of Physicians & Surgeons at Columbia University as well as at the Albert Einstein College of Medicine; President of the American Epilepsy Society, the American EEG Society, the Eastern EEG Society and Chair of the Professional Advisory Board of the Epilepsy Foundation of America...
See tribute by Nico Moshé and Tim Pedley
The global fund for epilepsy: A proposal
Jerome H. Chin, MD, PhD, MPH
There are an estimated 50 million people living with epilepsy (PLWE) worldwide. In the United States and other high-income countries, PLWE are offered a wide range of advanced diagnostic and therapeutic services. In stark contrast, the vast majority of PLWE in poorer regions of the world receive no care and treatment...
Joseph Roger passed away on September 3, 2012, in his 94th year. He was a major epileptologist of his time, the founder of a school with pupils from all over the world, and had a remarkable personality….
See tribute by Charlotte Dravet and colleagues
European Forum on Epilepsy Research • May 25-27, 2013, Dublin, Ireland
This forum is a collaborative research conference co-funded by the 7th Framework Programme of the European Commission in conjunction with the Irish Presidency of the European Union in 2013 and the European month of the Brain, May, 2013. It aims to bring together leading epilepsy researchers and policy makers in Europe to discuss a coordinated strategy for epilepsy research into the future. The three main objectives are:
The programme comprises the following six main topics, along with a number of innovative additional sessions, including "How to Make Your Voice Heard in the EU."
Visit the Conference site for complete information and to register.
Dr. Warren Blume Elected to Order of Canada
Dr. Warren Blume has been appointed as a Member of the Order of Canada for his long and distinguished service to Canadian citizens who suffer from epilepsy. The award recognizes his lifelong dedication to improving the lives of people with epilepsy, especially in the underserved areas of Ontario, service that was also recently recognized with the Kiffin Penry Award from the American Epilepsy Society.
Dr. Blume is Professor of Neurology Emeritus at the University of Western Ontario in London, where he began his career in 1972. In 1977 he helped establish the first epilepsy program in Ontario and the second in Canada. He is known around the world for his atlases in electroencephalography, which have contributed greatly to the training of several generations of electroencephalographers and epileptologists as well as for his numerous publications that have provided new insights into the clinical pathophysiology of epilepsy. He was one of the founding members of the Canadian League Against Epilepsy and was a leader in creating the EEG certification examination in Canada
The Order of Canada was established in 1967, Canada’s centennial year by Queen Elizabeth II. It is the centerpiece of Canada’s honors system and is one of the country’s highest civilian awards. Election as a Member recognizes a lifetime of outstanding achievement, dedication to the community and service to the nation.
Commission on Asian and Oceanian Affairs Newsletter
The latest newsletter from the Commission on Asian and Oceanian Affairs (CAOA) features a summary of the 9th Asian Oceanian Epilepsy Congress, held in Manila, The Philippines in 2012.
Other articles include reports from Australia, India, Japan, Korea, Sri Lanka, Taiwan, Thailand, as well as a report on EpiNet, the AOEO Chapter List, and the list of CAOA officers and members.
Uncovering the neurobehavioural comorbidities of epilepsy over the lifespan
Jack J Lin, MD; Marco Mula, MD; Bruce P Hermann, Ph.D.
In this report we define the specific psychiatric, cognitive, and social comorbidities of paediatric and adult epilepsy, their epidemiology, and real life effects; examine the relation between epilepsy syndromes and the risk of neurobehavioural comorbidities; address the lifespan effect of epilepsy on brain neurodevelopment and brain ageing and the risk of neurobehavioural comorbidities; consider the overarching effect of broader brain disorders on both epilepsy and neurobehavioural comorbidities; examine directions of causality and the contribution of selected epilepsy-related characteristics; and outline clinic-friendly screening approaches for these problems and recommended pharmacological, behavioural, and educational interventions.
The 6th annual Baltic Sea Summer Schools on Epilepsy (BSSSE) held in Rostock (Germany, July 8-13, 2012) was attended by 40 postgraduate students from Africa, Asia/Oceania, Eastern Mediterranean, Europe and Latin America. The course was co-directed by ILAE Past President Peter Wolf, Denmark, and ILAE Educational Commission member Rüdiger Köhling, Germany, with Ruta Mameniškiene, President of the Lithuanian ILAE chapter, as programme coordinator.
The course format is strongly interactive. Frontal teaching at the BSSSE is reduced to a few introductory lectures and tutorials in groups of changing composition, and included morning “cappuccino sessions,” case studies and peer to peer group discussions.
Latest newsletter from the African Commission. Read a recap of the First African Epilepsy Congress, held in Nairobi in June, 2012. This issue also includes a first-hand account of a person living with epilepsy; Nigerian League Against Epilepsy (NLAE) Conference reports; the story of Kenya Association for the Welfare of People with Epilepsy (KAWE); and calendars of coming events.
An Act representing a day to increase public awareness about epilepsy, Bill C-278, has received Royal Assent and is now a legally recognized day for epilepsy awareness in Canada. The Bill establishes March 26 as Purple Day, a day each year when Canadians wear purple to promote a greater awareness of epilepsy and support the 300,000 Canadians living with the disorder.
Purple Day for Epilepsy is celebrated each year on March 26 and is dedicated to raising awareness about epilepsy. It helps reduce stigma and empowers individuals living with epilepsy to take action in their communities. Purple Day was founded in 2008 by nine-year-old Cassidy Megan of Nova Scotia, and named after the internationally recognized colour for epilepsy, lavender. Purple Day was launched internationally in 2009. The Epilepsy Association of Nova Scotia and the Anita Kaufmann Foundation in the United States are the Global Partners for the Purple Day Campaign.
Dr. Ernst Niedermeyer
Ernst Niedermeyer died on April 5, after nearly 2 years with colon cancer, borne with grace and faith, but with pain in the final weeks. His teaching and lectures, his interests in clinical electroencephalography in general and in electroencephalographers and neurodiagnostic technologists in particular, and his over 240 publications, including the textbook he edited for many years and through many editions, Electroencephalography – Basic Principles, Clinical Applications and Related Fields, made him perhaps the most famous electroencephalographer in the world.
2013 Michael Prize for Epileptology Research
The Michael Prize is awarded biennially and is specially designed to attract younger scientists (normally not older than 45 years of age). Applications are now being accepted for the 2013 Michael Prize. Read requirements announcement.
Epilepsy across the Spectrum, Promoting Health and Understanding
US Institute of Medicine (IOM) Report
The Institute of Medicine report addresses the many obstacles faced by people with epilepsy and their caregivers in obtaining the necessary care. Although the report was written to address the situation in the United States, a quick review of the findings show that the recommendations can be applied in most countries. It provides a thorough and objective overview of the problems and a means to identify the issues that will require solutions, thus serving as a starting point for planning at the national and regional level. View video and report.
Report of the Guideline Development Subcommittee of the American Academy of Neurology and the Practice Committee of the Child Neurology Society
C.Y. Go, MD, M.T. Mackay, MBBS, FRACP, S.K. Weiss, MD, FRCPC, D. Stephens, MSc, T. Adams-Webber, MLS, S. Ashwal, MD, FAAN and O.C. Snead III, MD FAAN
Objective: To update the 2004 American Academy of Neurology/Child Neurology Society practice parameter on treatment of infantile spasms in children.
Recommendations: Low-dose ACTH should be considered for treatment of infantile spasms. ACTH or VGB may be useful for short-term treatment of infantile spasms, with ACTH considered preferentially over VGB. Hormonal therapy (ACTH or prednisolone) may be considered for use in preference to VGB in infants with cryptogenic infantile spasms, to possibly improve developmental outcome. A shorter lag time to treatment of infantile spasms with either hormonal therapy or VGB possibly improves long-term developmental outcomes.
Carl Zimmer; Discover Magazine; June 2012 issue; published online May 15, 2012.
Hidden Epidemic: Tapeworms Living Inside People's Brains. Parasitic worms leave millions of victims paralyzed, epileptic, or worse. So why isn’t anyone mobilizing to eradicate them? View article
Progress on PAHO and the European Declaration
Dr. Carlos Acevedo (PAHO) and Dr. Emilio Perucca (European Declaration) provide a discussion of current status of these initiatives. View videos.
First newsletter of the African Commission. Topics include First African Epilepsy Congress, Nairobi, 2012; Africans in Diaspora; My Personal Experience: Living with Epilepsy; Chapter Congresses; Education and Epilepsy. Read EpilepsyNews Africa.
Teaching Neurology to Primary Care Physicians in Bolivia
Considering that the number of neurologists in Bolivia is much lower than the rate per capita recommended by the WHO, we believe that it is essential to provide the basic tools for the diagnosis and treatment of neurological disorders to primary care physicians and family doctors. For the above reasons we decided to provide training on basic concepts of methodology and epidemiology and on the most frequent neurological diseases such as stroke, epilepsy, dementia, headache, and central nervous system infections. Read report
Funding from World Federation of Neurology
The World Federation of Neurology invites project proposals for specific educational or applied research projects in neurology and the applied neurosciences as part of its activities as a registered charitable organization and its mission to "foster quality neurology and brain health worldwide." The President of ILAE will be part of the project selection committee. More information...
Dr. Ingrid Scheffer – Laureate 2012 for Asia-Pacific for the L’Oréal-UNESCO Women In Science Award
Ingrid Scheffer, Professor of Medicine and Pediatrics and Chair of Pediatric Neurology Research at the University of Melbourne, is one of the five recipients of the 2012 L’Oréal-UNESCO Women in Science Awards. The award, which includes a $100,000 prize will be formally presented at UNESCO Headquarters in Paris in March, 2012. Read more
Governments in the Americas Will Create Epilepsy Care Programs