- Finalize the structure of the Commission and define Commission members’ specific roles.
- Hold an initial brainstorming session among Commission members and invite the input of ILAE leadership.
- Establish short-term (one year) and long-term goals.
- Initiate collaboration with other important stakeholders, such as American Epilepsy Society, Centers for Disease Control, Epilepsy Foundation of America.
- Develop specific activities in the area of epilepsy care and education as it pertains to the Caribbean countries; support interaction with Latin American Commission; assess disparities and diversities within North American Commission countries (USA, Canada, and Jamaica).
Commission Activities from January 2006 to August 2006
The Commission was established in January 2006 with three chapters (Canada, Jamaica, and USA). The Commission is composed of seven voting and one ex-officio member:
From Canada: Samuel Wiebe (Chair), Lionel Carmant (President of the Canadian League Against Epilepsy) and John Gottman.
From Jamaica: Amza Ali.
From USA: Sheryl Haut (Commission Secretary), Robert Fisher, John Pellock, and Jeff Noebels (ex-officio member representing the International Affairs Committee of the American Epilepsy Society).
Accomplishments in the First Five Months
- An initial brainstorming teleconference was held on 29 March 2006, which identified four main areas of work:
- Educational activities. Sheryl Haut will be in charge of this area, with a special emphasis on fostering Web-based educational activities. Ongoing efforts will be explored and collaborations will be enhanced (AES, EFA, CDC).
- Fostering epilepsy care and education in the Caribbean. Two main aspects will comprise this. The first pertains to the English-speaking Caribbean countries, which will be spearheaded by Amza Ali and Robert Fisher. The second component pertains to fostering the same aspects in Haiti. In this regard, Lionel Carmant will lead the efforts. Dr Carmant is originally from Haiti and has initiated some exploratory work in the areas that the CNAR will support.
- Liaison with and support of activities of the Latin American Commission. In this regard, Samuel Wiebe has initiated dialogue with leaders of the Latin American Commission and will also attend the Latin American Commission meeting in Guatemala in September 2006 with the specific aim of building this interaction and support. Amza Ali is also interested in collaborating in this area.
- Exploring the disparity and diversity of epilepsy care and education in the developed countries of the CNAR. John Pellock will formally be in charge of this taskforce. In addition Samuel Wiebe has contacted other individuals who are very interested in working on this area, including Bill Theodore from NIH (who is a principal author of the soon to be published North American Region report). The goals of this group will be to assess what evidence currently exists with regards to disparities in epilepsy education and care in Canada.
- Enhanced collaborations with other epilepsy organizations. The American Epilepsy Society has already voiced interest in collaborating actively and maintaining open and frequent communication with the CNAR. In addition, a CNAR symposium will be held at the first North American Region meeting in San Diego in December 2006. Participants will give presentations on the main areas outlined above, which are the focus of the activities of the present Commission. Formal liaison between the CNAR and AES are in place. In addition, communication has been established with CDC leaders of the epilepsy project (David Thurman) and plans are in place for collaborative work relating to health services in epilepsy, education, and research. An outline for projects derived from such interaction is being developed in collaboration by Samuel Wiebe and David Thurman. The CNAR will also support a major NIH-AES epilepsy research conference to be held in 2007 (Curing epilepsy 2007: Translating discoveries into therapies, to be held 29-30 March 2007 at the NIH in Bethesda, Maryland).
- North American Commission Report dissemination. The CNAR will help disseminate this recently produced North American white paper on epilepsy, which will be published in Epilepsia. It will also be posted in the AES Website, and it will be distributed at the CNAR symposium in San Diego in 2006. This report will also be used in our liaison and interactions with other stakeholders such as CDC, EFA, and NIH.
- Preparation of budget for 2006-2007. A formal budget has been prepared with these activities in mind and submitted to ILAE.