Members of the CMEA committee (left to right)
Mr Manuel Camilleri – Committee member; Prof Janet Mifsud – Committee Advisor; Mr Leonid McKay (Director, Caritas Malta); Mr Frank Portelli – President; Mr Matthew Attard- Secretary; Ms Caroline Attard – Treasurer; Mr Mario Dimech – Committee member; Ms Adriana Soler – Youth Officer
It is estimated that there are more than 4,000 people suffering from epilepsy in the Maltese Islands. The Caritas Malta Epilepsy Association (CMEA) was set up by voluntary workers in 1996 and now lists almost 300 members. In May 2001 the Association was accepted as a Full Member of the International Bureau for Epilepsy (IBE). One of our members is Vice President of the Executive Committee of IBE (Prof. Janet Mifsud) and another member (Ms Victoria Dimech) was previously a member in the European Region Executive Committee (EREC). In 2011 the International Bureau of Epilepsy together with the International League Against Epilepsy worked very hard to push forward and have a written declaration on epilepsy (0022/2011) in the European Parliament approved.
The Association is for persons with Epilepsy and their families. It aims to promote education and local awareness about epilepsy, especially because of the stigma suffered by people with this condition in society, particularly in employment. Our campaign is aimed at improving health care services, treatment and social acceptance of epilepsy, as a serious yet treatable brain disorder. Raising public and professional awareness and dispelling myths about epilepsy is one of our key objectives. Over the past years our promotional and educational campaign of the various aspects of epilepsy, includes talks on T.V. and radio, lectures at schools and parishes, articles in the local papers, a production of a video/DVD on epilepsy in Maltese and distribution of flyers translated into Maltese. Patient diaries and patient identity cards were also launched specifically for the use of those having epilepsy. This campaign is part of a worldwide campaign called Epilepsy Out Of The Shadows by IBE, ILAE and WHO. The statute of the association can be found here.
To date, we have held various national conferences as can be seen on the national and international conferences page. An interactive meeting held with general practitioners in alliance with the College of Family Doctors was also very fruitful and it was felt that this initiative will enhance the treatment and the management of people with epilepsy even further. In fact, this led to our fourth national conference held in February 2008: “Epilepsy – A Multidisciplinary Approach”. In 2010 the conference took on a general overview of the condition and it was entitled “What is Epilepsy? Improving our Knowledge”. Seeing that stigma is still a very important issue especially with regards to employment, the 2012 conference delved into the problems faced by people with epilepsy when they are looking for work. The title of the conference is “Epilepsy – How do we overcome stigma? See the national and international conferences page for more info about CMEA conferences.
We were successful in attracting IBE to host their biannual conference i.e. the 9th European Conference in Malta which was held in March 2004 entitled “Epilepsy and Society – Focus on Change. In 2004 CMEA also co-ordinated an EU funded Grundtvig project together with Germany and Hungary the aim of which is to create a curriculum with regards Epilepsy for Professionals Allied to Medicine.The 3rd and final phase of this project was held in April 2007 in Malta. The Guide Book which will be used as a guideline for trainers who want to cover the curriculum formulated is being translated into German, Hungarian and Maltese. Between 2012 -2104 CMEA also took part in a Leonardo da Vinci EU project MOTION: The Promotion of a Good Transition of Disabled Young Persons from School to the World of Work and Adult Life with partners from Turkey and Germany.
A very important step was taken when in conjunction with the Education Department we started organising an in-service course for teachers and facilitators every year in July. These courses are a very important means to disseminate information in schools all around Malta about what epilepsy is and how to manage it effectively.
Our activities also take us to various foundations, special schools and other entities wherein we give talks/discussions/lectures with regards to epilepsy. We also give talks during induction courses for Learning Support Assistants.
We endeavour to send representatives of our association to various seminars and conferences abroad in order to gain more insight about epilepsy and its’ management and meet other organisation to broaden our knowledge and experiences. In fact, several representatives from our youth section took part in another EU program (Epilepsy Youth in Europe). During their stays these youths worked with other youths from all over Europe, they work on I.T. projects, socialise, organise cultural activities and also share their experiences vis a vis epilepsy and how they cope with this condition in their respective countries.Through our counterparts in Europe we were also successful in sending one of our members for a full year Training Course. During this course, the needs of young adults with epilepsy are addressed in order for them to be able to access meaningful employment. They cover areas in career planning and development and personal development in a holistic manner.
Meetings for members are held every two months (see news section for exact dates). During these meetings, professionals in different areas are invited to give talks about their respective subjects. Sometimes these meetings are a means of experience sharing and support seeking. All that is shared during these meetings is treated with the strictest respect and everyone pledges to uphold confidentiality. For young persons, we have a dedicated closed Facebook page which is moderated by Adriana Soler.
The Caritas Malta Epilepsy Association has a mailing list where we send out information about meetings, TV programs, and other useful information which may be helpful. If you wish to subscribe to our mailing list just send a blank e-mail with the word Subscribe in the subject field to firstname.lastname@example.org. Your e-mail address will be kept confidential and will not be used for any other purpose. This e-mail address account is not monitored, e-mails sent to this address will not be read or replied to.
The current committee members are:
Frank Portelli – President, email@example.com
Noel Portelli – Secretary, firstname.lastname@example.org
Caroline Attard – Treasurer
Matthew Attard – PR
Adriana Soler – Facebook and youths
Manuel Camilleri – Member
Robin Pinkston – Member
Advisor – Prof. Janet Mifsud, email@example.com