Together with the International Epilepsy Bureau (IBE), we have expanded the mission of the Global Campaign into the Global Outreach Task Force, chaired by Helen Cross and Shichuo Li with the expert assistance of Hanneke Do Boer and the WHO. Work on a new vision statement is underway. Members of the epilepsy community in the US, Vision 2020 group (organized by the American Epilepsy Society) and the League proposed a vision statement that can be used by our constituents. The next step will be to test key phrases expressing the global message of our cause to see how they resonate with the public and with the people with epilepsy.
To better understand public health dimensions of the epilepsies, the League has joined the vision 2020 group to work with the US Institute of Medicine to prepare a report on the challenges faced by people with epilepsy and the opportunities to improve care and research. Concurrently, a group was formed in Europe comprised of representatives of the ILAE Commission for European Affairs and the IBE European Regional Executive Committee with the aim of sensitizing policymakers to the need to improve epilepsy care across the European region.
The League is holding an organizational meeting in November 2010 to create the African Regional Commission. This Commission will reach out to countries where an ILAE chapter has not yet been formed to stimulate the development of local constituencies.
Models of cost effective interventions have been developed from projects in China and Brazil, and additional information is coming from Georgia and Bolivia. New projects have been approved for Ghana and Karnataka State in India, and we are considering a project in a developed country to investigate discrepancies in access to epilepsy care. There is a concerted effort to enlist public figures or prominent organizations with a wide audience to disseminate information and appeal to the public and philanthropists. In 2009, the League developed a collaborative effort with the Union of European Football Associations (UEFA) with young athletes with epilepsy and former football stars playing together before the semifinals of the Under 21 European Championships in Sweden.
As epilepsy can be a manifestation of many diseases and epilepsy in turn can aggravate underlying disorders, we have formed alliances with key organizations such as Autism Speaks. We plan to assess the effects of comordid conditions on outcomes as well as ‘holistic’ treatments for the full gamut of symptoms linked with epilepsy. In these endeavors, it is important to have ‘local champions’ that will move the project forward in terms of execution and financial support. In addition, we have begun discussing potential collaborations with global philanthropic organizations such as Project Hope, aiming at helping individual countries build a sustainable local infrastructure.
We have received applications from 22 countries and have provisionally accepted five chapters for a total of 108 active chapters. The League’s secretariat is reviewing and modifying the rules regarding chapter incorporation. Regional commissions have been asked to facilitate ways in which isolated clinicians can easily interact with the League in countries and territories where formation of an ILAE Chapter is currently unfeasible.