M O N D A Y , 1REPORT0 F E B2019R U A R Y 2 0 2 0

1 1 F E B R U A R Y 2 0 1 9 Save the Date!

Now celebrated in 120 COUNTRIES WORLDWIDE

International League C e Againstl e Epilepsyb r a t e d i n 1 2 0 C o u n t r i e s W o r l d w i d e 1

www.internationalepilepsyday.org About International Epilepsy Day International Epilepsy Day, a joint initiative created by the International Bureau for Epilepsy (IBE) and the Table of Contents International League Against Epilepsy (ILAE), is a global event celebrated annually on the 2nd Monday of February, to promote awareness on epilepsy right around the world. With IBE and ILAE representation in more than 120 countries, this is a powerful opportunity to highlight the problems faced by people with epilepsy, their families and carers, in every region of the world. Social Media Developed in line with a strategy to advocate for appropriate legislation to guarantee human rights of people with epilepsy and to empower people with epilepsy tomaximise their quality of life, International Find out how popular #EpilepsyDay was on social 4. Epilepsy Day aims to highlight that: media and see how following of our social networks has grown this year! • epilepsy still remains a hidden disease due to the stigma attached; • it is treatable, yet 40% of people living with epilepsy in wealthier countries do not receive appropriate treatment. Over 70% of those living in low income countries cannot even access epilepsy medication InternationalEpilepsyDay.org regularly; • lack of treatment imposes a huge financial burden on national health systems; 6. See how International Epilepsy Day affected traffic to the internationalepilepsday.org website and what • research and legislation remain key issues in improving the quality of life of persons with epilepsy. content proved most interesting to our visitors.

Video Competition Participation Around the World Discover the winning entries from the Personal International Epilepsy Day events and participation were seen in 139 countries around the world on February 11th, making 8. International Epilepsy Day 2019 the biggest yet! Story and Educational Video categories of the 2019 Countries shown in pink are new countries seen to be involved this year. International Epilepsy Day video competition. • Aruba • Costa Rica • Indonesia • Mozambique • South Africa • Albania • Cote d’ivoire • Italy • Myanmar • Spain • Angola • Croatia • Iran • Namibia • Sri Lanka • Antigua and Barbuda • Cyprus • Iraq • New Zealand • Sudan Spreading the Message • Aruba • Czech Republic • Ireland • Nepal • Swaziland A look at some of the awareness-raising media • • Denmark • Israel • Nicaragua • Switzerland 10. • Australia • Dominican Republic • Jamaica • Niger • Sweden coverage and events from around the world on • Argentina • Dubai • Japan • Nigeria • Taiwan International Epilepsy Day 2019. • Azerbaijan • Ecuador • Jersey • Norway • Tanzania • Bahamas • Egypt • Jordan • Pakistan • Thailand • Bangladesh • El Salvador • Kazakhstan • Panama • The Philippines • Barbados • Estonia • Kenya • Puerto Rico • Togo • Belarus • Ethiopia • Korea (Rep. of) • Peru • Tunisia • Belize • Fiji • Kuwait • Poland • Turkey • Belgium • Finland • Lao • Portugal • Trinidad & Tobago • Bermuda • France • Latvia • Qatar • UAE • Bhutan • Gabon • Lebanon • Romania • Uganda • Bosnia and Herzegovina • Georgia • Libya • Russia • UK • Botswana • Guam • Lithuania • Rwanda • Ukraine • Bulgaria • Guatemala • Malaysia • Saint Lucia • Uruguay • Brazil • Guyana • Maldives • Saudi Arabia • USA • Canada • Ghana • • Scotland • Uzbekistan • Cambodia • Greece • Martinique • Serbia • Venezuela • Cameroon • Hungary • Mauritius • Sierra Leone • Vietnam • Chile • Honduras • Mexico • Singapore • Wales • China • Hong Kong • Moldova (Rep. of) • Slovakia • Zambia • Colombia • Iceland • Mongolia • Slovenia • Zimbabwe • Congo • India • Morocco • Somalia

2 3 Our Social Media activity: Instagram

Twitter @IntEpilepsyDay Account performance, February 2019: 1,125 #EpilepsyDay posts @IntEpilepsyDay Account performance, February 2019: Total followers: 1,003 +423 Tweet impressions: 25.1K New followers: Profile visits: 2,848 Mentions: 309 New followers: +355 Total followers: 1,902

25k+ impressions

Facebook International Epilepsy Day Page performance, February 2019: Page engagements: 6,587 Top influencer... Reach: 87,478

Top post reach: 27,851 The World Health Organisation New followers: +739 The World Health Organisation (WHO) were Twitter’s Total followers: 7,573 top Health Influencer during the period, with 4.7 million followers. For the third consecutive year, the most popular health-related URL in a tweet during the period was WHO’s epilepsy factsheet http://www.who.int/mediacentre/ factsheets/fs999/en/ shared over 1,000 times. As well as featuring International Epilepsy Day on the WHO epilepsy page, the organisation shared three feature stories: ‘Pilot studies help close the epilepsy treatment gap’, ‘The Fight against epilepsy in Ghana’ and ‘Scaling up epilepsy care in Myanmar’.

4 5 The InternationalEpilepsyDay.org website NEW! Interactive #EpilepsyDay map

This year we created added an interactive map to the website, displaying posts shared to socal Traffic to the InternationalEpilepsyDay.org website held steady this year, despit a change in the media from around the world! domain name. The graph below shows the peak of traffic that took place on February 11th, with over 2,700 individual visitors while the month as a whole saw over 7,500 visitors to the website. The average amount of time spent per visit was very high, at 3 minutes 58 seconds and the average number of user actions (e.g. click-throughs) was 2.3.

The most visited sections of the website:

1. Home – 6,321 2. Resources - 1,996 3. Map - 1,724 4. Events - 757 5. Competition results - 586

Top countries visiting the website: 1. USA 2. UK 3. France * 4. India 5. The Philippines *

* New entrants to the top ten for 2019

Campi Returns! Campi, the friendly International Epilepsy Day mascot that was introduced in 2016, returned Personal Stories this year in a fourth chapter of the animated series. The video features a new character - Stella This year we were again able to share a number of fantastic personal stories on the epilepsy.org Starfish. Stella loves to play football but is worried because she has epilepsy. Together, Stella, website. You can read them here. Campi and friends learn about epilepsy and sport. “I’ve watched the evolution of neurological testing from the beginnings of EEG’s, MRI’s and CT Scans. Medical Science has learned how to measure the brain and its activities with extraordinary detail and accuracy..” - Susan Fulmer

“Another time, seizures came with such force that I fell and I broke my right arm. The doctors put a plate in my broken arm. That’s when I started a foundation to help others living with epilepsy. I go to churches and schools to create awareness about epilepsy.” - Fred Kiserem

6 7 Personal Story Educational Video And the Oscars go to....! First Prize: 1st Prize: • Linda Cambell (Scotland): • Epilepsy Foundation (USA): Zoned Out (1) Taking Charge of the Storm Jr. (7) International Epilepsy Day Runners up: Runners up: Video Competition Results • Farah (Fatemeh) Abbasi Siar (Iran): • Cairo University Epilepsy Unit (Egypt): My Dream is a world without war (2) Pregnancy Awareness (8) • Ng, Wai Hung (Hong Kong): • Norsk Epilepsiforbund (Norway): A Big Boy Story (3) How to handle an epileptic seizure (9) • Delyma Asnydar SS (Indonesia): • Epilepsy Action (UK): A Sweet And Short Journey of An Epilepsy Warrior (4) Ali’s story: taking my medicine (10) • Yvette Barrera-Molina (USA): • Youth on the Move (Kenya): Some Super Heros Fight Crime, Mine Fights Epilepsy (5) Njambi’s Tonic Seizure (11) • Jess McCallum (Australia): • China Bureau of Epilepsy (China): Jess McCallum She Beast (6) 2018 Street Interview About Epilepsy in Shanghai (12) Thank you to all those who submitted short videos to 10 our competition for International Epilepsy Day. There were two categories, Personal Story and Educational. 1 First place in each category receives a prize of US$500, with five runners up in each category receiving US$100. You can watch all the videos on these links: You can view all ‘Personal Story’ entries here: https:// 3 www.youtube.com/playlist?list=PLDtaVe7olIXygWvY- 7fb9nRxkdcsS9uRbg. 2 You can view all ‘Educational Video’ entries here: https://www.youtube.com/play- list?list=PLDtaVe7olIXzgS_uzzsnN2xe- 7Flp-4diq.

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6 18 INTERNATIONAL EPILEPSY NEWS INTERNATIONAL EPILEPSY NEWS 19 8 9 Awareness THROUGH THE MEDIA International Epilepsy Day Events A small sample of the media coverage received on International Epilepsy Day 2019: Once again, events were held around the world this year to mark International Epilepsy Day 2019, raising awareness of and educating the public about epilepsy as well as providing support to members of the epilepsy community. Below are a selection of images to illustrate the variety of events that took place. You can find out more by visitingwww.internationalepilepsyday.org/events .

Epilepsy Ireland, in association with FutureNeuro, held a (USA) staff celebrate #EpilepsyDay. free evening seminar for people with epilepsy, their families & The Epilepsy Foundation carers, at the Royal College of Surgeons in Dublin.

Above: An article in Total Croatia News Asociación Nacional de Personas con Epilepsia (ANPE) Above: An article on held a talk at the School of Nursing in Las Palmas de Gran Epilepsy Liga (Belgium), held an event at Thagaste in Ghent, Canaria. entitled “Epilepsy, what does it do to your work, life and epilepsy and stigma in well-being”. iAfrica

Right: Torie Robinson, epilepsy Epilepsy SA Free State and North West Branch held an advocate (Scotland), Epilepsy Candle Lighting Ceremony on International Epilepsy International Epilepsy Day was celebrated at Foundation India Mumbai Epilepsy speaks to Sky News UK on Day! where around 150 patients and International Epilepsy Day care-givers were present.

10 11 Two years ago, in February 2017, Epilepsy the European Federation of Neurological 2018. The first of these was the epiXchange International Alliance Europe organised a very significant Associations, and a number of other stake- workshop, with seven large EU-funded proj- meeting in the in Brus- holders, including the pharma industry. ects joining forces to organise the one-day Epilepsy Day sels to highlight the need for a global effort event on 23 May, in . The event was if appropriate advances were to be made designed to gather a critical mass of epilepsy in addressing the unmet needs of epilepsy, “I wish my researchers in order to showcase the latest both in Europe and around the world. progress in research aimed to improve the TOWARDS A GLOBAL ALLIANCE The meeting heard that, although very daughter way epilepsy is diagnosed and treated. The little progress had been made in improving projects had been funded mainly through ON EPILEPSY RESEARCH medical outcomes of people with epilepsy simply to be the 7th Framework Programme (FP7). during the last decades, a large amount Participants heard how, despite intensive of data derived from extensive pre-clinical happy” and ongoing research, epilepsy research International Epilepsy Day event in the European Parliament reports research has become available which pro- still faces several unmet needs, with major vided a strong rationale for the conduction This very successful meeting led to a follow gaps in understanding the disease with on the unmet needs in the field of epilepsy and the status of epilepsy of potentially ground-breaking academi- up event in January 2018, when a Breakfast large economic and societal costs. The research priorities at a global level. cally-driven clinical studies tackling several Briefing was organised and, again, host- event provided the opportunity to syner- priority issues that were acknowledged by ed by Brian Hayes MEP. The 2018 event gise the results of the seven diverse proj- The event was organised by Epilepsy Alliance Europe joint task force of the epilepsy community: was attended by several MEPs, including ects and to identify the several bottle necks IBE and ILAE in Europe and hosted by the European Advocates • prevention of epilepsy; Mrs Lieve Wierlinck (Belgium), Seán Kelly which still remain. (Ireland), Alojz Peterle (Slovenia), Roberta for Epilepsy MEP group in the parliament. • prevention of sudden unexpected Delegates included basic and clinical epilep- death in epilepsy (SUDEP); Metsola (Malta), José Inácio Faria (Portu- sy researchers, big and small pharma, and gal), and Franc Bogovič (Slovenia). Also patient organisations. Other participants • optimization of epilepsy surgery; present were Stéphane Hogan, Head of included Dr Karim Berkouk, Dr Stefan Ho- • worldwide development of mobile Sector for Neurosciences, DG Research & gan and Ms Anna Graca from the European health programs to disseminate essen- Innovation, European Commission; Anna Commission’s Directorate-General Research tial knowledge about epilepsy; Graca, DG Research & Innovation with & Innovation and representatives of the • assembling of a very large well charac- responsibility for epilepsy; and Fredrick European Brain Council. terized cohort of persons with epilepsy Destrebecq, Executive Director, European The meeting showed how a bottom up that could be participate in all the Brain Council. There to tell the epilepsy approach is needed to coordinate research above projects and in the development story on behalf of Epilepsy Alliance Europe and policies with more collaborative re- of personalized therapies for seizures, were Helen Cross, Martin Brodie, Lieven search, including public partnerships, public syndromes and related comorbidities. Lagae, Philippe Ryvlin, Eugen Trinka, Kristl private partnerships, and global co-operation. Vonck, Janet Mifsud, Caroline Morton and All of these objectives would require On the following day, the EU Research recruitment and financial capacities that Francesca Sofia. Commission held a workshop titled ‘Shap- could only be achieved at the global level, Two other significant events took place in ing the Future of Epilepsy Research’ with a and justify the building of a global alliance program for epilepsy research. The closed invitation-only event was hosted by Brian Hayes, President of the 67-member-strong group of Members of the European Parliament (MEPs) who form the European Advocates for Epilepsy group in the parliament, a number of whom attended the event. Also present were some of the most senior representatives of a number of agencies and associations from Europe and North America. These included the Head of Sector for Neuroscience at DG Research, the Head of the ERN program at DG Santé, the NIH Program Director of Epi- lepsy, the Scientific Director of the Institute of Neurosciences of the Canadian Institute for Health Research, the Presidents of IBE and ILAE, the President of the American Delegation to the parliament, from left: Jakob Christensen representing ESBACE; Janet Epilepsy Society, the President and CEO Mifsud, Member EAE; Ann Little, IBE Executive Director; Philippe Ryvlin, Co-chair EAE; Martin of Epilepsy Foundation of America, the Brodie, IBE President and Co-chair EAE; Francesca So ia, Member EAE; Astrid Nehlig, Editor Chair of the Epilepsy Panel of the European Epilepsia; Fred Destrebecq, EBC; Eugen Trinka, Chair ILAE-Europe and Member EAE; Michele Academy of Neurology, the President of Simonato, representing epiXchange. 128 INTERNATIONAL EPILEPSY NEWS INTERNATIONAL EPILEPSY NEWS 13 9 global panel of speakers from Europe, Asia, 459 MEPs and had resulted in major fund- cesca to her daughters classmates for play Members of the Africa, and North and South America, at ing for epilepsy research in the Framework dates or parties have always been declined THE SPEAKERS European Advocates which it was reported that the upcoming Programme 7 (FP7). Many of the projects by their parents. A strong indication that to rare genetic diseases. Her career path for Epilepsy Group EU Horizon Europe framework for research funded by FP7 now formed the epiXchange there is still huge misconception and stig- would be calling for bold inspirational network. Other epilepsy projects that had ma attached to a diagnosis of epilepsy. And changed when her youngest daughter was President: Brian Hayes (Ireland) approaches with wide societal relevance, received EU funding since 2011 included if the parents are discriminatory towards diagnosed with a rare form of epilepsy in 2011. including open science, global challenges E-PILEPSY, the pilot European Reference Bea, this is likely to run off onto their young In July 2014, she joined the Italian Epilep- Vice President: Nathalie Griesbeck and open innovation pillars. Also looking to Network (ERN) project; EpiCARE, an ERN children. sy Federation with the aim of fostering (France) develop a global perspective, a call under focussed on rare and complex epilepsies; Sofia’s story of her daughter’s struggles epilepsy research. Recently, she founded Members Heinz Becker (Austria), the H2020 project titled ‘Coordinating and ESBACE, a project funded by DG Sante shows clearly the continued need for basic Science Compass, an enterprise that Bendt Bendtsen (Denmark), Franc European brain research and developing that surveyed epilepsy prevalence and education about epilepsy in the commu- provides services and tools for effective BogoviČ (Slovenia), Michal Boní global initiatives’ was underway with the cost burden in a number of countries. Prof nity and undermines the reality that many investments in the biomedical sector to Brian Hayes MEP (Poland), David Borelli (Italy), Paul European Brain Council’s European Brain Ryvlin highlighted the need for a global people with epilepsy face - that epilepsy is non-profit organizations. Brian Hayes served as a member of Dail Brannen (UK), Christian-Silviu Bușoi Research Area (EBRA) proposal being focus on epilepsy research if progress is more than seizures. (Romania), Matt Carthy (Ireland), selected to coordinate the project. to be made in identifying new and novel Eireann (Irish Parliament) from 1997-2002 Fred Destrebecq, Executive Director of EBC (Malta), Nessa Childers treatments for the 30 – 35% of people with and 2007-2014, until his election to the So, it was with this, not-insignificant, outlined the purpose and expectations of (Ireland), (Cyprus), epilepsy whose seizures currently are not European Parliament in May 2014. background of activities, raising the call EBRA, a consortium of the Network of Eu- Kostas Chrysogonos (Greece), Deirdre controlled by existing treatments. There He was appointed to three European for the global perspectives that are now ropean funding for Neuroscience research Clune (Ireland), (Malta), were new opportunities for such global Parliament Committees - Economic & Mon- required in research, that a lunch meeting (NEURON), the Joint Programme Neuro- Tanja Fajon (Slovenia), José Inácio research initiatives through the European etary Affairs, Development, and Budgetary took place in the parliament in Strasbourg degenerative Disease Research (JPND) and Faria (Portugal), Eleonora Forenza Brain Research Area (EBRA). Control. He is a member of the Delega- on Tuesday 12 February 2019, the day after the Human Brain Project (HBP). The EU was (Italy), Lampros Fountoulis (Greece), tions to Iraq and South Africa. International Epilepsy Day. An issue for concern was the lack of sup- seeking projects that would address the Jens Gieseke (Germany), Theresa Invitations to the meeting were extended port in Europe for the WHA Resolution on problems of duplication and fragmentation Frederic Destrebecq Griffin (UK), Jytte Guteland (Sweden), to the 67 MEPs who form the membership Epilepsy, approved by the World Health of research efforts and that would encour- Frédéric Destrebecq is Executive Director András Gyürk (Hungary), Marian of the European Advocates for Epilepsy Assembly in 2015, with report back in 2018. age more collaboration and better coordi- of the European Brain Council. In this Harkin (Ireland), Anna Hedh (Sweden), group and the event was hosted, once Few countries had addressed the recom- nation of brain research at EU and global capacity, he is responsible for providing Liisa Jaakonsaari (Finland), Anneli again, by Brian Hayes MEP. At the lunch, mendations of the resolution and efforts levels. This would lead to improved access strategic direction and leadership while Jäätteenmäki (Finland), Barbara 12 MEPs, from Czech Republic, France, were now underway for a call to action. to research systems and data sources by all managing the day-to-day operations of Kappel (Austria), Karin Kadenbach Germany, Ireland, Finland, Luxembourg, While support had been received from stakeholders involved in the neuroscience EBC and its ongoing relationships with its (Austria), Seán Kelly (Ireland), Romania and Slovenia, voiced their support some countries including Russia, China and research area, resulting in better use of member associations and other stakehold- Katerina Konečná, (Czech Republic) for the 6 million people living with epilepsy Brazil, there had been no support from EU the investments that are made in brain ers, as well as representing the organi- Martin Brodie Miapetra Kumpula-Natri (Finland), in Europe. In turn, the MEPs heard from Member States, despite their support for research. The critical mass and economies sation in various European and national Prof Martin Brodie is President of the Merja Kyllönen (Finland), Giovanni speakers about the continued unmet the EU Written Declaration in 2011. The ar- of scale thus achieved would facilitate the forums. International Bureau for Epilepsy (IBE) La Via (Italy), Jean Lambert (UK), needs of people living with epilepsy and gument was that epilepsy was too narrow development of new global initiatives and Prior to this position, Fred served the Euro- and Co-chair Epilepsy Alliance Europe. His Marian-Jean Marinescu (Romania), the need for improved services, novel a topic. However, the counter arguments quicker translation of successful outcomes pean Union of Medical Specialists (UEMS) involvement with IBE goes back more than Costas Mavrides (Cyprus), Mairead new treatments and actions designed to were that epilepsy encompassed several to clinical applications. as Chief Executive Officer, and previously 30 years, having served as a member of its McGuinness (Ireland), Roberta Metsola educate the public about epilepsy and, hundred diseases; was sufficiently wide to as Director for European Affairs. Huge investment has been provided by the board from 2005 to 2009. (Malta), Tilly Metz (Luxembourg), have been selected for an EU-funded Euro- thereby, reduce discrimination. EU for brain research to a number of initia- Ulrike MŰller (Germany), James pean Reference Network (ERN); 50 million His research interests include antiepileptic In welcoming all those present, Brian tives. Although the initiatives generated Nicholson (UK), Demetris Papadakis people worldwide had been diagnosed drug neuropharmacology, randomised Hayes highlighted the success of the MEP a considerable amount of knowledge and (Cyprus), Dimitrios Papadimoulis with epilepsy; and it ranked second in the clinical trials, prognostic outcome studies, group since its launch in 2011. He advised innovative approaches, more coordinated (Greece), Emilian Pavel (Romania), league of years of life lost. management of epilepsy and factors that he would be retiring from politics at efforts are needed to avoid fragmentation, Alojz Peterle (Slovenia), Sirpa affecting antiepileptic drug response. In her presentation, Francesca Sofia, an Pietikáinen (Finland), Pavel Poc the end of the current EU parliamentary to identify gaps and highlight priorities, in term but would be happy to assist in identi- Italian mother of a young child with epilep- order to support and foster translation into (Czech Republic, Dominique Riquet fying an MEP to assume the chair once the sy, said that her biggest wish was for her new health interventions. (France), Paul Rübig (Austria), Sofia elections were completed in May. Of note, daughter simply to be happy, adding that Sakorafa (Greece), Christel Schaldemose The EBRA Consortium will foster alignment the average turnover of MEPs at the time this was a wish shared by all parents for Philippe Ryvlin (Denmark), Annie Schreijer-Pierik and co-ordination of research strategies of elections is 50%. This means that about their children. Francesca’s daughter Bea Dr Ryvlin is Professor of Neurology and (Netherlands), Olga Sehnalová (Czech across European and global brain initia- has a complex form of epilepsy which is Chair of the Department of Clinical Neuro- half of the membership of the MEP group tives; facilitate the emergence of research Republic), Igor Šoltes (Slovenia), Maria sciences at University Hospital of Laus- would be lost, requiring fresh efforts to resistant to medication. She continues to projects in specific areas in active clusters Spyraki (Greece), Neoklis Sylikio- anne (CHUV), Switzerland, and Director of rebuild it post-election. have seizures and requires a lot of support. selected for involvement in EBRA, and tis (Cyprus), Eleftherios Synadinos the Epilepsy Institute (IDEE) in Lyon, France. (Greece), Claudiu-Ciprian Tânâsescu Speaking in Strasbourg, Prof Philippe Despite the hardships that life has thrown provide them with support for effective Francesca Sofia Ryvlin, co-chair of Epilepsy Alliance Europe, at her, Bea remains a happy loving 9-year collaboration, including enabling sharing He is President of the European Epilepsy (Romania), Patrizia Toia (Itlay), Nils Dr Francesca Sofia is a molecular biologist thanked Brian Hayes and the MEP group old, who goes to school and who yearns to of data and access to research infrastruc- Monitoring Association (EEMA), co-Chair Torvalds (Finland), Ivo Vajgl (Slovenia), with a PhD in neuroscience. She special- for the support they had provided over have friends. But the sad situation is that tures; and increase the visibility of the brain of the Epilepsy Alliance Europe Task Force, Julie Ward (UK), ized in healthcare economics and policy the previous seven years. Notable achieve- she has never had a friend and has never research portfolio as a whole and promote founder of the European Network for Epi- (Greece), Tomáš Zdechovský, (Czech as a research program manager for a ments included the Written Declaration on been invited to a play-date or party by the uptake of EBRA results to key stake- lepsy Research (ENER), and coordinator of Republic), Jana Žitňanská (Slovakia). major Italian health foundation, dedicated Epilepsy 22/2011, that had been signed by classmates. Any invitation sent by Fran- holders. the EU funded pilot ERN - (E-PILEPSY). 1410 INTERNATIONAL EPILEPSY NEWS INTERNATIONAL EPILEPSY NEWS 15 11 International Epilepsy Day

Save the date! February 10th 2020

International Epilepsy Day

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