The League was founded in 1953 in order to provide an integral support both to the patient suffering from Epilepsy and the family.

The birth of such entity was motivated by the restlessness willingness of a group of physicians supported by voluntary ladies. These women were searching with great enthusiasm, for a way to improve the life conditions of epileptic patients, who suffer from limitations partly due to their disease but mostly due to social, and especially labor prejudices.

There is a medical directorship and a volunteering, working for the organization and growth of this entity gratuitously, but there are also many professionals from different fields working on salary, this not implying a lesser mystic towards the epileptic patient.

Through the years, this has motivated the creation of different new benefits; among those intended for youngsters are:

• Ambulatory Encephalography Laboratory and Clinical Laboratory with differential fees according to economical status.
• Drug bank: featuring medicines priced lower than in the market, available to any patient, irrespectively of his/her economic status.
• Informative courses
• Medical care service composed by specialists including Pediatric Neurologists, Adult Neurologists, Neuropsychologist, Psychologist and Nurse.
• Pre-university Course, to enhance the knowledge acquired during the last school years and to prepare youngsters to take the examinations to access higher education.
• Printed Matter available
• Psychologist in charge of work counseling to the youngsters in pre-university course.
• Psychopedagogy Workshop to provide support in study methods applied to children with normal intelligence but slow in learning.
• Self-Aid Groups (from which the Pre-university course idea was born).
• Special partial gratuitousness, for patients with socio-economical problems
• Students Welfare Program for university and technical students with epilepsy. Includes medicines, exams and medical treatment throughout their studies. Exceptionally, poor students also receive a scholarship to face textbook expenses, pay for their food, clothing, transport, etc.
• Work counseling provided by the League’s Social Workers to youngsters wishing to find a job.
• Workshop school for youngsters with Epilepsy and Mild to Moderate Mental Retardation.

In my condition of being immersed in the medical activities of the medical service - I have taken part in several studies to assess the impact of Epilepsy on youngsters - I had to design the medical program for the care of epileptic adolescents of League medical service and I have supported general physicians and self-aid groups with educational talks.

I have always considered of major relevance the work with the group of youngsters among our patients, since our intervention is able to generate radical changes in the way they face their disease and life in general, avoiding stigmatization and over-protection, which are more limiting conditions than the disease itself.

Unfortunately, it is more difficult to induce changes once growth has been driven through the wrong path.

In view of this, I found Doctor Carlos Acevedo’s invitation to organize the First Meeting of Youngsters suffering from Epilepsy and to screen and support the future youth monitors, extraordinarily interesting.

The great initial motivation was the interesting invitation from Doctor Chaplin to take part in the European meeting of youngsters suffering from Epilepsy. But since only a limited group of youngsters will attend this activity, I considered more compliant to their expectations, to invite them to take part in the training of monitors, who will work to improve their own conditions, and thus, in the future, the conditions of other youngsters.

The initial goal will be the preparation of the First National Meeting of Youngsters to take place in Santiago in January 2002, with the possibility of taking part in further international meetings.

All the youngsters of the Pre-university course were invited. The youngsters related to the League through previous workshops or those having accessed any of the benefits provided by the League were also invited, by means of a mailed written invitation. 40 youngsters attended, and the attendance to the fortnightly meetings averaged 30 persons. The decision of not excluding any person was taken, and therefore, youngsters with intellectual disability also attended. Some of them withdrew because of difficulties in integrating to the activities, but many others, in view of their outgoing personality, haven’t given away, and are receiving great acceptance and support by the rest of the group.

I have permanently received the stimulating support from other members of the League, to whom I have asked their collaboration. There has been a special participation of the League’s social workers, whose members support me during the meetings with the youngsters by means of monitoring the progress of their activities.

Once the phase of presentation and information was completed, the formation of working groups was initiated, with the objective of organizing tasks according to preferences and abilities.

I suggest the formation of four areas or groups:

• Artistic
• Computer Science
• Research and development of related topics
• Work Counseling

A democratic debate in which everybody took part was carried out. After the debate, I struggled to maintain the enthusiasm and to prevent its disintegration, as well as to preserve inclination to work, and finally, four groups were created:

• Artistic cultural

• Consultants in Computer Science (to the rest of the group)

• Scientific or in charge of Research in topics

• Recreational

The members of each group determine the group’s immediate objectives, and the required program to put them into practice is initiated. Part of this work will take place in-group meetings but progresses will be reported in plenary fortnightly meetings:

• This group will modify the lyrics of a known song in order to replace it with a topic allusive to Epilepsy. This will be edited on video and the resulting production will be shown during the National Meeting.
• Others will create a dramatic work libretto referring to Epilepsy in youngsters and will present it during the National Meeting

• Creation of a Website, as a link of the ANLICHE website (http://www.anliche.cl)
• As primary features of the Web, they suggest fun, happiness, many games and places to participate by means of sending written opinions.
• Surveys and data prepared by scientific group will be integrated to the Website.
• The games featured will be created by the group in charge of recreational activities.

• This group will work in the Epilepsy and Sexuality topic; this will include Web site surveys and preparation of information to be debated during the National Meeting.
• Risks related to the use of medications (drugs) in women, gestation, offspring, etc. will be included among the topics to consider for discussion. Also, there is great concern in discussing the impact of epilepsy when relating with youngsters not suffering from the disease.

• The group will prepare different dynamic activities and games, which will be supplied, to the Computer Science group to be inserted in the Web site and to the rest of the Monitors, to be used during the Meeting.
• They will be the leaders of large-scale recreational activities during the National Meeting.

Also, in order to achieve basic communication in a first phase, English lessons are being scheduled for the complete monitor group.

We are aware that the above project is ambitious, nevertheless, we have the enthusiasm of the youngsters. The guidance of such enthusiasm into useful channels will carry this first phase through to a happy conclusion and will allow to lay the foundations for an annual meeting with enrollment of new monitors from other cities of the country, and for a permanent communication via internet.

Looking forward to count on your valuable presence in Chile during the Meeting,

Sincerely yours,

Dr. Verónica Fernández

Project Coordinator

To take place on January 10^th, 11^th and 12^th 2002, in Santiago, Chile.

It will congregate 80 youngsters aged between 15 and 25 years with representatives from all the province seats.

Regional seats will assume the travelling costs. The cost of the Meeting, accommodation and food (for province participants) will be the responsibility of the League from Santiago plus the support from private pharmaceutical laboratories.