Present:
Markus Georg (Germany) - Chairman
Manuel Ott (Germany)
Pekka Rantanen (Finland) - Secretary
Noreen Power Waldron (Ireland)
Ann Marie Houston (N-Ireland)
Asa Gunnarsdotter (Sweden)
Pawel Zadrozny (Poland)
Michal Debiec (Poland)
Brigitte Huebschi (Switzerland)
Stratis Chadzicharalabous(Greece)
Kiki Plessa (Greece)
Fula Axipolity (Greece)
At the beginning of the official meeting the host and president of Greek RP Society Stratis Chadzicharalabous welcomed everybody and explained how the idea of starting a European Youth Network was first discussed in Retina Europe’s meeting in Berlin in 1999. He also told about organising and hosting this first youth meeting in Athens.
Markus Georg was announced to the chairman of the meeting.
Pekka Rantanen was announced to be the secretary.
Pekka Rantanen (Finland)
Member of the board in the Finnish RP Society. 550 members in the society. Approx. 40-50 youngsters. He is trying to activate young people and hopes that more countries get involved.
Expectations: Important beginning of youth work. Grow much bigger and build up contacts and camps.
Manuel Ott (Germany)
20 years old. Webmaster of homepage of German youth group. Regional contact person for young people former in Berlin and now in Marburg.
Expectations:
Asa Gunnarsdotter (Sweden), 25 years old
Expectations: To meet other young people in Europe and to see how they live with RP.
Michal Debiec (Poland) 19 years old
Since April 2000 in Polish RP Society. Glad to be appointed to take part of this meeting.
Expectations: To hear more about treatments. To learn from other countries. Want to arrange next meeting of youth in Poland.
Ann Marie Houston (N-Ireland)
150 RP people in Northern Ireland. Work together with Republic of Ireland.
Altogether 650 members.
Pawel Zadrozny (Poland), 24 years old
Started RP Society in Poland with 20 members. Now 150 members. Very familiar atmosphere.
Noreen Power Waldron (Ireland)
At the moment no youth group in Ireland. But it is planned to establish one together with Northern Ireland.
Brigitte Huebschi (Switzerland)
Member of managing committee of Retina Suisse. There is no youth group in Switzerland, but there are interests to build one.
Kiki Plessa (Greece)
Diagnose of RP since 1 months
Fulla Axipolity (Greece)
32 years old, member of council
Netherlands Youth Group (Jacqueline van der Wiel and Muriel Stokhuyzen) offered by email on November 1st to Markus Georg (Germany) to issue a youth magazine. They promised to publish a Retina Europe Youth Magazine, starting from the beginning of year 2001 two times a year and if possible, four times a year in 2002 onwards. This would mean for example two pages from each country interested. The language would have to be English. The deadline for material for the first issue is January 15th 2001.
Every country interested is requested to either e-mail or post articles and possible photos on youth activities or stories written by young RP-people to our (The Netherlands (wielromp@casema.net or murielstokhuyzen@hotmail.com)) address. The Netherlands Youth Group will then take care of lay out and publishing etc. and send two hard copies (one for the office and one for photocopying) of the Retina Europe Youth Magazine to every country that has participated and/or is interested. The Athens participants were very exciting about this proposal and will support them.
Each country has to ask for programs for youth work and some domestic or European funds in order to secure further activities on European level.
A list of problems of younger people has to be specified.
Special needs such as: appropriate after-diagnostic information
career-planing, support for university/schools, leisure time (sports),
relation + environmental + independence, self-reliance + esteem, exchange of knowledge,
family planing, health insurance, exchange of experiences (in form of interesting stories etc.)
The participants of the meeting felt that it is important to encourage young people to become active players in their national RP-associations’ councils and working groups. Including young people in decision making process, more emphasis and attention can be given to the young members who need support but feel outsiders with older members. Exchange of experiences between young and older RP-members should not be avoided but considered as useful information for both age groups. In European level, this would be an advantage of a combined meeting between Retina Europe and the youth representative in Poland in 2001. The youth group stated very clearly that it does not want to be in competition with Retina Europe but as an active age group working towards the common goal of the European and national RP-organisations and telling them the specific needs of future generations.
It is important to improve the exchange of information and contacts among young people both at national and European level. For example, there are a lot of young people in Greece but they do not know each other. Meetings of young people in all European countries are recommended. Encouraging also sighted friends to participate these activities is helpful in order to familiarise the others with our every day problems.
How can we do the work? Only 2-3 people make all the work. What can we do to motivate other youngsters? Suggestion: Involve them by giving them small responsibilities in organising activities. This would encourage more people to join the youth groups.
In order to evaluate the situation of young people in different countries and to get background information for our future work, it was decided that a questionnaire be sent to RP-association in each country. This questionnaire would include quantitative data of young members in associations such as distribution of youth by age and sex and other information on current activities that include young people.
Establishment of E-mail List. This should mainly work as a communication system for our plans. The list should be opened to all members of Retina Europe Societies up to 35 years. Responsible for this list will be Manuel Ott (Germany).
It was decided to establish the Retina Europe Youth Homepage. Manuel Ott (Germany) and Pawel Zadrozny (Poland) will take care of this subject. It should be an independent URL with links from and to Retina International and the members of Retina Europe. Pekka Rantanen (Finland) will have a look for specific guidelines for accessible homepage designs for visually impaired.
Homepage of Retina Europe Youth is in relation to youth magazine published by Netherlands.
It is important to find reports from psychologist in each country for recommendations to young people with RP. These reports should be published to the young people. Germany for example has a special work group of psychologist with RP who offers their help. This could be helpful for this project.
Other European countries must be invited in youth work and be informed about details of meeting and further plans. The countries that are not participating in the meeting and not announced contact persons for youth work will be contacted as follows:
Pekka Rantanen (Finland): France and Spain
Michal Debiec + Pawel Zadrozny (Poland): Lithuania, Slovakia, and Czech Republic
Asa Gunnarsdotter (Sweden): Norway, Denmark, and Iceland
Markus Georg (Germany): Italy, Austria, Hungary, and Portugal
Ann Marie Houston (N-Ireland): United Kingdom
We also had the possibility to learn about the different information material published in different countries such as specific material for young RP-people in Germany and a video tape on retinal degenerations from Finland.
A lecture on topic “Mobility and orientation problems for young people -
how can I approach new places” was given by Aggeliki Verikokaki. She is a mobility instructor with education in Denmark. Mobility issues are quite new in Greece because the work has started in Greece in 1994.
Topics:
A List of every day life tricks and solutions could be collected for young people to help them to overcome the problems they face in studies, mobility etc. More information about specific rehabilitation for young RP-people in different countries should be collected and shared
There are a lot of different cultural possibilities in order to get in contact between young people with RP.
It was reported that Switzerland has a theatre group. On European level this seems to be not so practical because of several reasons.
However, a cultural meeting of young musician with RP was appreciated. It could be like a festival. Time, place and financing are uncertain at the moment. First we have to clarify if there is enough interests by the European members. Other details will be clarified step by step. Finland and Germany know already of some contact persons and they will be contacted. Responsible and contact person for this project is Kiki Plessa from Greece.
Stratis suggested arranging a possibility for making holidays of young people with RP.
This should be separate from the annual meeting of the Retina Europe Youth contact persons. This holiday would not have a special agenda but still some kind of recreational activities program. In the first place it would be a chance to get to know each other.
Stratis recommended a hotel on a Greek island, which is cheap outside the normal travel season.
Other possibilities of camps should be checked. In order to prepare for this holiday/camp and to publish it in each country, all details must be provided to Markus Georg by beginning of March 2001.
Another way of getting in contact with others would be establishing a host network for young RP-people travelling in Europe. Increasing number of young RP-people travel around the Europe. Often times they also travel alone. It would be helpful to have a friend sharing the same problems in those places one travels to. The host, a young RP-person and/or his/her family could provide local guidance or accommodation depending on the needs. At the same time, personal friendships across the borders are established. For this purpose, a list of voluntary hosts in different countries needs to be collected.
Pekka Rantanen told about the project called “European Cities within the Reach of the Visually Impaired” carried out by RNIB in UK for easy access to places in few European cities. He promised to find out more about the project.
A geneticist Mirto Papaioannou gave an interesting lecture about her work in the field of family planning and genetic counselling. She reported on the current situation of research and the future possibilities of treatment. There is a close cooperation with other scientists in Europe.
A survey of the different forms of hereditary retinal degeneration was given including the percentage of the probabilities of giving a birth to a child affected by RP in different circumstances. 127 genes with mutations are already detected. The results of the discovery of the human genome are useful but it will take a lot of time to work with this fact.
After Mirto’s lecture the participants had a lot of questions which she kindly answered in detail.
Mrs. Reini, a pedopsychiatrist, gave an emotional lecture on relations between sexes and on sexuality of low vision young people. The facts were based on a study done with the adolescents with low vision. Very important are the experiences of the first years in their life. These early experiences can affect the person’s behaviour and identity again in age of puberty and even later on. However, the same pattern applies also to sighted people excluding the effects of reduced visual ability.
She spoke very openly about the things that low vision at early development stage might have in later years in a person’s sexuality. This subject is often taboo for most of the young people. A lot of them are not aware of this situation.
It is hard to admit that people with visual problems look for partners with same situation because there is no need for long explanations and the relationship is based on the personality and not on the health condition.
The lecturer, Mrs. Risiar introduced herself to the participants. She mentioned four important facts, which should be taken into account when talking about young visually impaired people:
A young person with visual impairment should be open minded to work with computers. This is the fist step. Unfortunately there are no benefits in this regard in Greece. A high self-esteem is required and it can be trained. The skills of “selling one’s strong qualities” should be reinforced. The people should ask themselves: What is the need of the market? What are my skills? This is essential. Another important issue in her work is to press the government to have the equipment for the work. Afterwards she answered the numerous questions in this regard.
Director of athletic events of Athens, Stephanidis Dimitrios introduced himself and Stratis translated him during his lecture. Mr. Dimitrios learnt the problem that people with RP are afraid to quit their sports. They are unsure what to do.
He reported his experience in section of disabled sports. His close contact to the concerned people gave him a good knowledge in this regard. In his opinion, the other European countries are not doing enough for the needs of disabled athletes. He was interested to receive more details about the experiences of the participants in their own countries.
It was suggested that the planned camps could include certain sports activities that could give the feeling of “still being able to do it my way”.
The participants agreed that the group is called “Retina Europe Youth”. It was difficult to set any age limit to the youth wanting to participate in the activities but it was decided that the maximum age would be 35 years.
It was decided that no official board should be established to coordinate the activities of the Retina Europe Youth. Annual meetings would include the young representatives from each country. These representatives should be in close contact with the councils of their national RP-associations as to better be able to inform and connect the European activities to the national activities of the young people.
It was highly recommended that all European countries could participate in our work to activate the young RP-people. For this purpose, it is important that a young link person is appointed in each country in order to disseminate the information to others in his/her country and back to European level.
Equally important is to engage those countries in Europe and in Central Europe, which do not have an official RP-association.
Markus Georg from Germany was appointed as a chairman of Retina Europe Youth and Pekka Rantanen as a secretary. The group will not yet have an official secretariat but Markus Georg as a chair and having a wide experience in organising youth activities in Germany will be the primary contact person in all correspondence concerning the Retina Europe Youth.
The next meeting of Retina Europe Youth will be held in Poland on August 1 – 3. Since the meeting of Retina Europe is held at the same time in Poland, it was suggested that these two meetings could have parallel session for exchange of information and ideas.
Persons responsible for organising the Retina Europe Youth meeting in Poland are Pawel Zadrozny and Michal Debiec.
On Sunday afternoon, the chair thanked the host Stratis for excellent organisation of the meeting and all the participants for fruitful work and closed the meeting. The combination of four days meeting sessions and leisure time was considered a successful way of having such a meeting, which gave enough time to get to know each other and discuss the common things of young persons caused by retinal degenerative diseases.
Markus Georg (chairman of Retina Europe Youth)
Pekka Rantanen (Secretary of Retina Europe Youth)