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TOWARDS A GLOBAL ALLIANCE ON EPILEPSY RESEARCH Organised by Epilepsy Alliance Europe and hosted by , MEP and members of the y rit io European Advocates for Epilepsy Group pr e car alth M al he aking epilepsy a glob

Today marks a Milestone! that has been going on since So spoke Brian Hayes MEP (Member of 2011", Mr Hayes added. Parliament), on opening the workshop in Background the in Brussels on Although very little progress has Tuesday 7 February. been made in improving medical Mr Hayes is President of the European outcomes of people with epilepsy Advocates for Epilepsy Working Group - a during the last decades, a large group of cross‐party, cross‐national MEPs amount of data derived from with particular interest in epilepsy. extensive pre-clinical research has become available which provides Mr Hayes explained that the purpose of a strong rationale for the conduc- the meeting was to see how resources in tion of potentially ground-break- the US, EU and, possibly Asia, might be ing academically-driven clinical pooled so that each region was not work- studies tackling several priority ing in a silo but as a joint collaborative issues consensually acknowledged unit. by the epilepsy community: The European Written Declaration on 1. prevention of epilepsy; Epilepsy in 2011, which was supported with the signatures of 459 MEPs, and the 2. prevention of sudden un- Photo: Janet Mifsud expected death in epilepsy more recent WHO Resolution on epilepsy, 5. assembling of a very large well charac- (SUDEP); approved unanimously by the World terized cohort of persons with epilepsy Health Assembly in 2015, recognised the 3. optimization of epilepsy surgery; that could be participate in all the importance of the issue. The workshop 4. worldwide development of mobile above projects and in the development would also demonstrate to the European health programs to disseminate essen- of personalized therapies for seizures, Parliament "the quiet but deliberate work tial knowledge about epilepsy; syndromes and related comorbidities. All of these objectives would require Photograph captions recruitment and financial capacities that Previous page: Brian Hayes MEP could only be achieved at the global level, Top: Emilio Perucca, ILAE President; MEP; Janet Mifsud, IBE Vice and justify the building of a global alliance President Europe program for epilepsy research. Middle: Phil Gattone, President & CEO Epilepsy Foundation, Emilio Perucca, Stéphane Despite a number of major research calls Hogan DG Research; Athanasios Covanis, IBE President; Vicky Whittemore, NIH funded by US National Institutes of Bottom: Health (NIH) and by the EU during the Round table discussion at the workshop last decade, financial support for epilepsy research lags behind most comparably prevalent or severe neurological and non-neurological disorders. Accordingly, no significant progress has been made in reducing: 1. the incidence or prevalence of epilep- sy, 2. the proportion of patients whose seizures remain treatment-resistant, 3. the death toll resulting from the disease. Currently, 65 million people suffer from epilepsy worldwide, one third being refractory to treatment and at an increased risk of sudden death (SUDEP, about one every 10 minutes worldwide), suicide and seizure-related fatal accidents. Thanks to significant advances in pre- clinical research and technology, several Foreground photo: Ann Little interventions could now be proposed to tackle the above issues. However, testing these interventions would represent a huge clinical research challenge due to the major cost and recruitment difficulties of such clinical trials. Both limitations could be effectively addressed by multinational collaborative efforts. Prompted by previous successful global research initiatives, notably in the field of traumatic brain injury (TBI), the Ameri- can Society for Epilepsy (AES), ILAE and IBE have worked over the last 18 months on the opportunity to develop a project addressing the above issues. A specific task force was set-up by ILAE/ IBE to define potential research topics that would deserve or require a global approach. This work was built on previous efforts from the epilepsy community to de- Photo: Ann Little lineate priorities in epilepsy research in the US, Europe and the Asia-Oceania region. In parallel, the global epilepsy scientif- ic community was contacted soliciting further proposals. Suggested priorities and proposals were consolidated and ranked through a web-based survey that was again disseminated to the community. The workshop in the European Parliament on 7 February hosted by the European Advocates for Epilepsy working group and MEETING PARTICIPANTS chaired by Brian Hayes MEP. The closed • *Brian Hayes MEP: President, European Advocates for Epilepsy work- invitation-only event, addressed the oppor- ing group of MEPs tunity to develop a global alliance research • Sean Kelly, MEP program in epilepsy, along the example of • Nessa Childers, MEP what has been done for TBI. • MEP, represented by her assistant It was attended by some of the most senior • Michał Boni MEP, represented by his assistant representatives of a number of agencies • *Stéphane Hogan: Head of Sector for Neuroscience, Unit: and associations from Europe and North “Non-communicable diseases and the challenge of healthy ageing”, America. These included the Head of Sec- Health Directorate of DG Research & Innovation tor for Neuroscience at DG Research, the • *Enrique Terol: Seconded National Expert. Policy officer, DG SANTE Head of the ERN program at DG Santé, • *Vicky Whittemore: Program Director of Epilepsy, National Institutes the NIH Program Director of Epilepsy, for Health (NIH), USA the Scientific Director of the Institute of • *Anthony Phillips: Scientific Director, Institute of Neurosciences, Neurosciences of the Canadian Institute Mental Health and Addiction, Canadian Institutes of Health for Health Research, the President and • *Emilio Perucca: President, International League Against Epilepsy (ILAE) the President-elect of ILAE, the President • *Samuel Wiebe: Treasurer and President-elect, ILAE of IBE, the President of the American • *Helen Cross: Secretary General, ILAE and Co-chair, ILAE Global Re- Epilepsy Society, the President and CEO search Priorities and Advocacy Task Force of Epilepsy Foundation of America, the • *Athanasios Covanis: Co-chair, ILAE-IBE Epilepsy Alliance Europe Chair of the Epilepsy Panel of the Europe- Task Force and President, International Bureau for Epilepsy (IBE) an Academy of Neurology, the President • *Philippe Ryvlin: Co-chair, ILAE-IBE Epilepsy Alliance Europe Task of the European Federation of Neurolog- Force ical Associations, and a number of other • *Eli Mizrahi: President, American Epilepsy Society (AES) stakeholders. • Philip Gattone: President & CEO, Epilepsy Foundation of America and The scene was set for the discussion by Mrs IBE Vice President North America Francesca Sofia, the mother of a child with • *Francesca Sofia: Scientific Director, Federazione Italiana Epilessie (FIE), Italy and mother of a child with epilepsy Dravet Syndrome, who spoke passionately and with great emotion on the isolation • Janet Mifsud: IBE Vice President Europe and loss of control that had followed • Gay Mitchell: Member of Epilepsy Alliance Europe and former MEP her daughter's diagnosis. She told of the • Kerif Ferath: Vice Director of the Neuroimaging Research Laboratory (LREN) and Project Leader of the Medical Informatics Platform of the loneliness, stigma and discrimination to Human Brain Project (HBP) CHUV, Lausanne which her daughter was subjected and how • Eugen Trinka: ILAE Commission on European Affairs her quality of life continued to worsen, not • Massimiliano Coppola: father of a child with epilepsy only because of her epilepsy but also, be- • Paul Boon: Chair, Programme Committee, European Academy of cause of the side effects of her medication. Neurology (EAN) In closing the workshop, Mr Hayes, • Ann Little: Executive Director, International Bureau for Epilepsy and urged that the momentum established at President, European Federation of Neurological Associations (EFNA) the meeting be maintained. This was an • Xavier Hormaechea: Director Public Affairs, UCB important initiative and should not be • Eimear O’Brien: Head Patient & Stakeholder Engagement, Neurology allowed to die. "MEPs are interested in Patient Value Unit, UCB providing support. If we have something • Marcus Glynn: Parliamentary Assistant to Brian Hayes MEP concrete to give, then they will get behind • Heather Clarke: EU Senior Policy Office, EFNA us", he said. * denotes speaker

Members of the European Advocates for Epilepsy President: Brian Hayes Vice President: Nathalie Griesbeck Members: Heinz Becker, Bendt Bendtsen, Michał Boni, David Borelli, Paul Brannen, Chritian-Silviu Bușoi, Matt Carthy, David Casa, Nessa Childers, Lefteris Christoforou, Kostas Chrysogonos, , Miriam Dalli, José Inácio Faria, Lampros Fountoulis, Jens Gieseke, Theresa Griffin, Jytte Guteland, András Gyürk, Marian Harkin, Anna Hedh, Liisa Jaakonsaari, Anneli Jäätteenmäki, Barbara Kappel, Seán Kelly, Katerina Konečná, Miapetra Kumpula-Natri, Merja Kyllönen, Giovanni La Via, Jean Lambert, Marian-Jean Marinescu, Costas Mavrides, Mairead McGuinness, Roberta Metsola, Jim Nicholson, Demetris Papadimoulis, Emilian Pavel, Aloijz Peterle, Sirpa Pietikáinen, Pavel Poc, Dominique Riquet, Paul Rübig, Sofia Sakorafa, Christel Schaldemose, Olga Sehnalová, Maria Spyraki, Neoklis Sylikiotis, Eleftherios Synadinos, Hannu Takkula, Claudiu-Ciprian Tânâsescu, Patrizia Toia, Julie Ward, Theodoros Zagorakis, Tomáš Zdechovský, Jana Žitňanská. For further information on the European Advocates for Epilepsy group contact Ann Little at [email protected].