EAMDA is the European Alliance of Muscular Dystrophy Associations and was formed in 1971. EAMDA is made up of a small number of delegates from each member association, and the number of member associations is growing, including some former East European countries. EAMDA is primarily an information network, providing contacts in different fields in various countries.
EYO is the EAMDA Youth Organisation. Conceived in 1989, the EYO regulations were approved and the committee members were elected at the first congress in 1992 in the Netherlands.
The EYO is made up of delegates, normally from the National Youth Group (NYG) of their own country. They represent the young people in their asssociation, and it is their responsibility to form the link between their association and the EYO.
The EYO is managed by a committee of five people. Each is elected for a term of two years. Election takes place at the Annual Meeting of Delegates (AMD) which is held in conjunction with the Annual EAMDA conference. The EYO committee internally elects of a chairman, a treasurer and a secretary, and meets three times a year to discuss and develop ideas and projects.
These are some of the ideas in the EYO Activity Plan for 1996.
At the moment, the EYO committee is: the chairman, D.Cochius (Netherlands), the secretary & treasurer I.Wallis (United Kingdom), L.Maccione (Italy), S.Kessler (Switzerland), J.Kuorikoski (Finland)
The first and foremost aim of the EYO is to provide assistance and support for young people with neuromuscular disorders. EYO is there to provide contacts and links between young people and to develop the establishment and work of the NYGs through the delegates, to provide help with aspects of these disorders such as quality of life, self image, medical intervention, and to include as many young people as possible in this.
Ongoing projects include:
EYO Exchange Programme
Each summer, an exchange programme is set up by a member association. Young people are invited from other member associations to spend two weeks in activities, games, sightseeing, socialising, etc. It is a mixture of leisure and education. More information on the Exchange Programme.
Workshops/seminars on different subjects
Workshops are arranged in various places in Europe on various themes - organising NYGs, communication, respiratory support, independent living, etc. You can view the EYO Ventilation Seminar Report and the This is some of the latest newsletter.
Holiday Exchange Project
The purpose of this project is to put young people who would like to travel in contact with each other, to arrange trips abroad by exchanging homes.
This research project involves a detailed examination of provisions for physically disabled young people in higher education in Europe.
Video Project
This involves producing short videos illustrating quality of life, opportunities and social support available to physically disabled people in Europe.
Eastern European Countries
These countries are now becoming an important part of EAMDA. The EYO is paying special attention to the inclusion of their delegates in all projects. In 1996, two seminars are planned. One is about the organisation of an NYG, the other a course in English.
Documentation Project
We are trying to "translate" documents and leaflets with a medical theme into language which is less difficult to follow.
With an organisation such as EYO, the members can
or
E-mail Sebastian Kessler at gprior@di.epfl.ch
or Ian Wallis at 101655.345@compuserve.com
EAMDA is a registered charity, registration number 285412.