Chapter News

Paddy McGeoghegan, Communications Officer at Epilepsy Ireland, introduces us to the work of the organisation.   Epilepsy Ireland was founded in 1966 and for over 50 years we have been working to achieve a society where no persons’ life is limited by epilepsy. We have achieved a lot over the years but there’s a lot more work to do on the behalf of persons with epilepsy here in Ireland. With 11 offices throughout Ireland, we are from the community and for the community in providing education and support on the condition. Our aims are as follows: To provide quality and relevant support, information & advice, meeting the needs of people with epilepsy, their families and carers, professionals and the wider community To communicate effectively with stakeholders; to raise awareness and to improve public understanding of epilepsy; and to advocate for the rights of those with epilepsy, their families and carers. To provide relevant training and education services to people with epilepsy, their families, and healthcare and other professionals. To undertake, encourage, fund and communicate research into the causes of, cures for and management of epilepsy and into the social and psychological effects of the condition. To support people with epilepsy by [...]

In this article, submitted by Deirdre Floyd, President of Canadian Epilepsy Alliance/Alliance Canadienne De L’épilepsie and IBE Representative, we'll learn the history of the CEA/ACE and about their ongoing work to improve the lives of Canadians affected by epilepsy.   Canadian Epilepsy Alliance/Alliance Canadienne de L’épilepsie (CEA/ACE) was formed in 1998 to address issues of national importance to people living with epilepsy, to share resources and leverage partnerships to help improve the overall quality of life for Canadians living with a seizure disorder. Our goal was to fulfill a need that wasn’t being met for those living with epilepsy and for the Canadian Epilepsy Alliance to become the voice representing the needs that clients conveyed to us from coast to coast. When we formed in 1998 we developed a constitution, bylaws and applied for charitable status so we could become a national charity for Canadians with epilepsy. Representatives from epilepsy organizations from across the country met at the City Hall in Trois Rivieres, Quebec to officially launch the new Canadian Epilepsy Alliance/Alliance Canadienne de L’épilepsie. We believed that as an alliance and working together would make us stronger than we could ever be alone in our efforts to enhance the quality [...]

  Epilepsy Association of Sri Lanka (EASL) is a not-for-profit charity established in 1989 with the aim of striving to improve public awareness of epilepsy and to facilitate medical and social support for patients and families with epilepsy in Sri Lanka. Sri Lanka is a low- to middle-income country in which myths and misconceptions about epilepsy are rampant among the community. Education, employment, marriage and social functioning are often adversely affected in individuals afflicted with epilepsy due to the social stigma that is prevalent in Sri Lankan society. These reasons often form a barrier that prevents patients from seeking medical attention. Over the years, EASL has tried to quell the misconceptions and stigma associated with this disorder through various public awareness programmes using different media. Members of EASL (who mainly comprise of medical professionals who treat patients with epilepsy and carers of patients with epilepsy) use print media, electronic media such as television and radio, and social media to reach out to the community and spread awareness of this disease. Recent examples of such programmes include a national short film festival on epilepsy and an awareness campaign for public health midwives in the Galle district on the South coast of Sri [...]

AVANCE , the school and association for children with epilepsy and special needs was founded in Lebanon in 1997. The association was founded by Arlette Honein. AVANCE is recognised by the Lebanese Ministry of Interior (NGO Decree # 67) and recognised by the Ministry of Education as a specialised school. The Association’s mission is to promote personal development and foster the learning abilities of pupils with epilepsy whose needs exceed the services available in the so-called regular schools with the aim of achieving social, school and / or professional integration. AVANCE aims to educate and care for children and adolescents with epilepsy. It has two Branches: Beirut and Mountain. There are 486 students registered at the school for the year 2018-2019. The school aims to re-integrate pupils into a regular school, and adolescents towards socio-professional integration. Further aims are to help the beneficiary (child or adolescent) gain autonomy to become an active member of society, to reconcile the pupil with the school by promoting his development and the realization of all his intellectual, affective and social potentials, to prepare the student for (re) integration into a regular school or for a vocational or technical apprenticeship, to guide and accompany the families [...]

Community Development and Epilepsy Foundation (CODEF), in Cameroon, was founded in 2002 by Nsom Kenneth Ninying, - community health nurse, whose relatives have epilepsy. His maternal uncle had five children, three of whom were tragically killed in a fire due to epilepsy. His school guardian had a son called Ephesians who had epilepsy and died by drowning in a stream. Kenneth has two nieces who each have a child with epilepsy, while his cousin also has a daughter with epilepsy. On several occasions Kenneth has witnessed negative behaviour perpetrated against persons with epilepsy undergoing seizures. For instance, Kenneth came upon a scene one day where a girl had a seizure inside a car. The driver pulled her out of the car, beat her and abandoned her unconscious on the road. Nobody in the car protested. The driver continued to insult the girl saying “Who is this wizard that wants to bewitch my work for the day?” After observing such improper treatment and preventable injustices, Kenneth called a meeting for persons with epilepsy, persons living with HIV/AIDS, women/girls, health personnel and sympathisers. This meeting resulted in the formation of CODEF to fight against epilepsy and HIV/AIDS and its social injustices. Its mission [...]

The Croatian Association for Epilepsy was established in 1998 with the aim of promoting, developing and improving the quality of life of all persons with epilepsy, as well as their families, and enabling a better understanding of the nature of epilepsy and the needs of people affected by it. The group’s activities include monthly meetings (lectures givend by doctors or self-help groups), counselling (via email, phone or in person), organisation and celebration of International/ Croatian National Epilepsy Day and Purple Day, preparing and publishing booklets and educational materials (including First aid for epilepsy, Women and epilepsy, Living with epilepsy and Epilepsy in children), collaboration with other professional associations and societies, organisation of conferences and appearances in media. The Croatian Association for Epilepsy is especially proud of founding our educational and recreational camps for children with epilepsy (now held 7 times), where children with epilepsy have the opportunity to improve their knowledge of the condition and lifestyle issues such as socialising, employment, and driving. The children are encouraged to reach their full potential in life and to feel equal to their peers in every aspect. This year we have arranged special workshops for kindergarten educators and staff, giving them an opportunity to learn [...]

In this edition of IBE's Meet the Chapter series Robin Pinkston introduces the Caritas Malta Epilepsy Association Caritas Malta Epilepsy Association was set up in 1996 and is run completely by volunteer workers.  Our mission statement is “a better life for people with epilepsy in Malta.“ We provide free training sessions in many different venues to promote increasing local awareness about epilepsy and to reduce stigma. There are about 300 members on our mailing list who receive regular informative newsletters and the public is invited to a bi-monthly support group meeting.  There are also social events designed to encourage interaction and foster community. Presenting copies of our new Epilepsy Toolkit (available in English and Maltese) to Mr Oliver Scicluna, Commissioner for the Rights of People with Disabilities in Malta and members of the Commission, B'Kara Malta; February 2019 Recently Caritas Malta Epilepsy Association (CMEA) has launched an epilepsy toolkit in English and Maltese in conjunction with International Epilepsy Day on 11 February 2019, which is celebrated worldwide on the second Monday in February. The toolkit was funded by PEKTUR, a funding scheme by the Commissioner for the Promotion of the Rights for Persons with Disability (CRPD). Mr Frank Portelli, [...]

In this week's edition of IBE's Meet the Chapter series, Max A. Bangura, Executive Director of the Epilepsy Association of Sierra Leone (EASL), introduces us to the work of his organisation. The Epilepsy Association of Sierra Leone (EASL) is an Indigenous community Based Non-Governmental Organization (NGO) that was formed in 1999, registered with the Sierra Leone’s Ministry of Social Welfare Gender and Children’s Affairs (MSWGCA/112/19) in 2000 and joined the International Bureau for Epilepsy (IBE) on the 31st of August 2005. EASL was established to debunk the myths attached to epilepsy by creating a society where everyone understands epilepsy, where attitudes towards the disease are based on facts rather than fiction, and to respond to the desperate need for medication, social care and reintegration of people living with epilepsy that face exclusion and isolation in Sierra Leone.   PROGRAMMES AND ACTIVITIES: The Epilepsy Association of Sierra Leone (EASL) supports programmes at national and local levels to improve quality of life of persons with epilepsy. Since 1999 EASL has provided regular services to patients with epilepsy and their families in the area of Information and Referral services, Information and Education, advocacy programmes and livelihood promotions for their independence. The National office of [...]

In this edition of IBE's 'Meet the Chapter' series we are introduced to the Mauritius-based Edycs Epilepsy Group. Edycs Epilepsy Group is the leading, voluntary non-governmental organisation founded on 24 December 1997 by a group of volunteers, patients and health professionals, whose aims are to assist people with epilepsy through advocacy in accessing quality health care, provision of free medication, diagnosis assistance, training in epilepsy care, campaigning for changes in attitudes and behaviors - just some issues Edycs Epilepsy Group addresses everyday in the Republic of Mauritius. Our Mission The mission of Edycs Epilepsy Group is to promote lifelong access and opportunities to people who have epilepsy and their families, to become fully included and participating members in the community. Our Key Objectives Promote epilepsy awareness and understanding in the Republic of Mauritius including Rodrigues islands Promote epilepsy health care services via Edycs Epilepsy Health Service Centers Mauritius and Rodrigues islands Provide inclusive education for children with epilepsy via Edycs Help to Grow SENS Schools in Mauritius and Rodrigues Work in close collaboration with stakeholders in particular Government bodies, Corporate Sector and Civil Society at large Develop a mid- and long-term Strategic Plan to address epilepsy Network with key local, regional [...]

The Spanish Federation for Epilepsy (FEDE) was founded on April 1st 2006, with the cooperation of 15 regional Spanish associations. Today we represent 20 associations. Our aim is to improve the quality of life for people with epilepsy and their families. To do so we inform society about epilepsy, we fight to achieve rights for people with epilepsy, we encourage people to join the regional associations or to create new ones if they don't exist, we search for real data about epilepsy and we help researchers who are working on treatments for a better comprehension of epilepsy. This year is the second time that an epilepsy Research Fair takes place, at which basic science researchers, medical researchers and technical developers will present their work to patients, families, other researchers and students to improve diagnosis, treatment and the daily life of people with epilepsy. The "Conocer la epilepsia nos hace iguales" (knowing epilepsy makes us equal) campaign with UCB Laboratories has translated facts about epilepsy for more than 100,000 children, improving the future generation's understanding of the difficulties faced by people with epilepsy. This is the eigth year of this campaign and FEDE are very grateful to UCB for their help. Further information [...]