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Minutes of the Retina Europe Youth 2nd annual meeting

in Warsaw, Poland on 26-29 July, 2001 (In parallel with Retina Europe meeting on 28-29.7.)

Present:

Markus Georg (Germany) - Chairman

Pekka Rantanen (Finland) - Secretary (participated in RE meeting on 28-29.7)

Jacek Zadrozny (Poland)

Pawel Zadrozny (Poland)

Michal Debiec (Poland)

Lise Wagner (France)

Kiki Plessa (Greece)

Pantelis Pittas (Greece)

Manuel Ott (Germany)

Simone Brucker (Germany)

Ausrine Jonikaine (Lithuania)

Lina Klimaviciene (Lithuania)

Inga Kornikajte (Lithuania)

Egidijus Rybakowas (Lithuania)

Ann Marie Houston (N-Ireland)

Jacqueline Wielromp (Netherlands)

John G. Moe (Norway) - (participated in RE meeting on 28-29.7)

Asa Gunnarsdotter (Sweden)

Caisa Ramshage (Sweden) - (participated in RE meeting on 28-29.7)

Brigitte Huebschi (Switzerland)

Contents

1. Opening of the meeting
2. Contacts with other European countries
3. Information
4. Structure and organisation of Retina Europe Youth
5. Next meeting
6. Feedback from participants
7. Closing of the meeting
Activities outside the meeting
Conclusions

1. Opening of the meeting

On the arrival date 26.07.01 we received a warm welcome from our host Mrs. Malgorzata Pacholec as president of Polish RP Society. She introduced herself and the team, which made the meeting in boarding house of school for blind pupils possible.

The chairman, Markus Georg, also welcomed the participants to the second REY meeting. He stated that REY is gaining its status, present countries have grown from 7 to 11 from the fist meeting in Athens.

All the participants then introduced themselves and told about what happens in their countries as far as the youth activities are concerned as well as their expectations from the Warsaw meeting.

The chair told about the initiation of the REY activity and gave a brief update of activities carried out since the establishment of the group.

2. Contacts with other European countries

In the last meeting it was agreed to encourage young people from all European countries to participate REY activities. Following people had been nominated to find contacts.


Markus:

Austria: some responses but situation in process (Improble)

Hungary: some responses but situation in process

Italy: no response

Portugal: no response


Pekka:

France: lot of interest among young people, Lise Wagner has joined us

Spain: strong RP-organisation in Spain, no response despite Pekka's various inquiries


Asa:

Denmark: unofficial RP group, some interest, no real contact person

Iceland: very small unofficial RP-group, some interest but no young contact person

Norway: situation is good, interested people and John Moe has joined us


Ann Marie:

UK: Lot of interest, difficulty to get funding to participate, no real contact person


Pawel and Michal:

Czech Republic: no response

Lithuania: situation is good, so many of them participated in Warsaw

Slovakia: no RP-association, no response

3. Information

REY Magazine

There was no way to find an adequate name for youth magazine. We have looked for a funny but serious name, which is related to eye, sight, view or something else. In first edition of magazine we will ask the readers for some proposal. First of all it will be named "Retina Youth Magazine" without pointing out "Europe". This enables us not to be restricted with our magazine and work only for Europe. This could be helpful for the future to get more countries all over the world involved.

It will be an advantage to learn from the experience which the German youth group made with publishing their own magazine since several years called "Durchblick" (i.e. grasp). Simone Brucker reported about her experience about editorial work and handed over a copy of latest issue.

We also discussed about the means of distributing the magazine. The group felt that it is important to make the magazine accessible for those young people in different countries who do not have the access to our website. This means that it needs to be published not only in our homepage but also in large print.

In the beginning it will not be published in audio version. We will wait for some response and if there is demand we will talk about it again. This is also a question of covering the expenses.

Collection of articles and their edition will be done by Jacqueline and her colleagues in the Netherlands. As Simone has already experience as editor of the German youth magazine, she promised to share her knowledge with Jacqueline.

The distribution will be made from the Netherlands to the domestic RP society and REY contact persons in those countries they exist already. These are responsible for forwarding to the young people in their countries. Same apples with collection of different articles and forwarding them to Jacqueline.

It was decided to make the first issue with an introduction of each country, contact person for youth and their actual work and plans. For this report we have fixed a deadline of 4 weeks (Poland and Greece 8 weeks due to summer holidays). Also comics and funny stuff should be collected in order to liven up the magazine.

Due to the fact that Germany has already such a magazine some texts from young author already exists. Some of the texts will be translated into English within 4 weeks and the editorial people from Netherlands decide if they can be used. With the magazine we can reach all the people who have no access to mailing list or Internet. The countries have to advice the Netherlands how many copies they need to receive.


REY Homepage

There are a lot of hits to the website of Retina Europe Youth from all over the world. In spite of the fact that the address is a little bit difficult. Polish people were instructed to get following address www.rey.org as official URL. However the conversion depends on the expensed for the new name. Some profiles of different members are missing (for example Lithuania). All these countries and persons were asked to send a short profile (preferably with picture) to Polish webmaster.


Mailing List

Manuel Ott reported about the result and background of the established mailing list. A lot of people subscribed to the list are only "readers" and not an active part of the list. One reason could be that most of the topics discussed on mailing list were borne by first meeting in Athens. People who did not attend the meeting are like outsiders. It must be our goal to get all the people on the mailing list involved in our topics. People complain that there is no reply if a new member signed to the list. Markus Georg was asked to welcome them officially to the list.

Furthermore Markus was asked to start some discussions about youth specific concerns. For this purpose he can also use experience report from German members to discuss for example the difference to the other countries and thoughts.

The last chat session was a good start to extend this way to get in contact. However, the existing provider is not the best solution for our requirements. Bad contrast and slow connection make a fluent conversation more than difficult.

Michal Debiec was asked to find a better provider and to explain how to handle it (URL, access, nickname, etc.). As soon as he clarifies those points he will invite on our mailing list for a chat session.

As best time for chat, Sunday night (22:00 CET) was agreed. These sessions can also be held on demand. Later it is planed to have special topics for such a chat session.


Offer from Greece

The Greek participants asked on behalf of Stratis (president of Greek RP Society) if there is interest in a meeting in Greece in beginning of year 2002. He has the possibility to invite various medical specialists who can give lectures especially about the needs of young people with RP. This meeting could be financed by some official sources. First of all the Greek organisers have to know if there is interest, when and in which special field.

Due to the fact that some questions could not be answered and Stratis was not available for this topic it was decided to make all further clarification on the mailing list.


Holiday in Skopelos

In October 2001 the first common holiday will be carried out on Greek islands Skopelos. The Greeks organise this event which was also decided at last meeting in Athens.

24 beds are already booked since several weeks. At the moment there are only 12 confirmed bookings (4xGermany, 2x Finland, 6x Greece). All the participants were asked to make much more advertising in their own country in order to get more people for this trip. Markus Georg already made a summary in German language about all the facts in order to inform German members. He will send this information also to Switzerland and Netherlands for distribution.

There is no official program for this vacation. Having fun together, adventures and sharing experiences will be the idea of the holiday. The costs are 15 EURO per day incl. breakfast. A sailing trip around the island is planed. Ann Marie asked if children could also participate. Kiki reported about more details, but she will also provide all details via our mailing list to the community. The participants are asked to send the booking form soon to Kiki in order to get everything organised.

It was proposed to have next time a combination of official meeting and holiday trip. It was also proposed to make a camp, which is easier to organise because of no need for long booking times in advance. We would be more flexible in this way.


Public relations

For this European meeting, TV and radio was invited to make a report. Both appeared and interviewed the people. Michal and Pawel reported how to get the media involved. Very important are personal contacts because we cannot offer any sensation. The participants were grateful for Michal and Pawel for this work and it was recommended to get media involved in future meetings.

It was discussed to have a small leaflet or print explaining in short about Retina Europe Youth. The history, the members and the goals. After long discussion we were not sure if there is a real need and who would be our target group. We decided that every country is responsible by their own to make Retina Europe Youth known. Rather than making our own leaflet, we decided to ask RE to mention REY in their own leaflet. This would cover the original idea under the head of RE.

4. Structure and organisation of Retina Europe Youth

It was decided that number of participants or rather delegates in REY annual meetings is restricted to maximum two from each country. However, every country should only have one vote. This enables an effective work in the meeting.

Observers are allowed to visit the meetings if chairman agrees. Of course this condition is not valid in the case of combined vacation/camp with REY meeting.

At next meeting all the participating countries should send some general information in advance in order to have all the participants on the same level of information to guarantee a good discussion.


Election of REY chairman and secretary

Suggested and voted as chairman was again Markus Georg. Suggested and voted as secretary was again Pekka Rantanen. This will apply until the next meeting.


The role of REY

A discussion on the future role of REY started. The status of REY was mentioned from "nothing" to the range of "active group with increasing number of members". The question was if we should be a formal group. This could mean to have a steering committee. The expectations of being formal are to receive some support for example from RI or European Community. Under support was mentioned financial aid and infrastructure. To be a formal REY group depends inescapable from the plans of Retina Europe. Retina Europe is at the moment also no formal group but only a sub group of Retina International. There are some efforts to be more independent but still under the umbrella of RI. This independence is required to receive support from European community.

At the moment REY has no accounts and cannot enter in any financial or administrative contracts. The running of REY will be done on voluntary basis. If needed and/or possible, activities, such as camps, meetings or other projects will be administrated (financially) by national RP-associations. This topic can not be clarified by REY alone. By the way RE made the fist step in this regard. In order to find a solution we have to prepare this point as one of the main topics at next meeting. As a disadvantage to receive support, it was mentioned increasing influence from outside and losing flexibility and self-determination.

5. Next meeting

Markus Georg asked if somebody is interested to hold next meeting of Retina Europe Youth in 2002. After discussion about Cyprus or Frankfurt it was asked to have the next meeting in August 2002 in Frankfurt/Main, Germany. The RI meeting in Tokyo, Japan in August 2-4 must be taken into consideration when setting up exact dates.

The following meeting should be combined with a summer holiday in Germany. This could be realised as follows:

Arrival on Sunday, vacation until Friday, departure on Friday. REY delegates will have a meeting from Friday to Sunday.

6. Feedback from participants

A feedback on the meeting was given by every person:

The unanimous feeling was that the participants would come again to REY meetings and learned a lot from other countries and sharing experiences and thoughts. Not so many results as at our first meeting where some basics were set out. But for second meeting, still okay.


For the next meeting following points should be kept in mind:

  • to have a clear agenda which needs to be followed without great changes
  • to have a meeting with RE delegates
  • to separate leisure time and meeting
  • to have some more scientific topics
  • to fulfil the stated expectations of each countries in any scale
  • to be open minded to problems of other countries from their point of view
  • 7. Closing of the meeting

    On Sunday noon, the chair thanked the participants for their active interest on the meeting and especially for the Polish guys for their organisation.

    At lunch time there was a common dinner with RE delegates. Dr. Rainald von Gizycki reported about the results of the RE meeting and thanked the host and all the people involved in the organisation. He also congratulated the REY for its seemingly fruitful work in offering activities to the youth.

    Markus Georg gave a short summary of topics REY had covered during their meeting. He also joined the thanks to the host and to all RE delegates for having such a wonderful chance to meet with them and show what REY is all about.


    Markus Georg

    Chairman

    Retina Europe Youth


    Pekka Rantanen

    Secretary

    Retina Europe Youth

    ACTIVITIES OUTSIDE THE MEETING

    Introduction of new Euro notes and coins

    On Thursday evening, Pekka Rantanen held a lecture about the soon coming Euro currency He gave background information on how the needs of 7 million visually impaired European citizens have been taken into consideration when designing the Euro notes and coins. European Blind Union has been active in the process since year 1993 and during the recent years concentrating on different information campaigns and their transfer to EU national blind organisations.

    Pekka has worked as a national co-ordinator in the information campaign for visually impaired in Finland. He circulated a few sets of dummy training notes and coins (for visually impaired) to be analysed by the participants. Everyone found it interesting to have a first touch of what the Euro looks like when it comes in circulation in 12 EU countries in the beginning of year 2002. He pointed out that specific information and training possibilities on Euro are available in each national blind organisation of 15 EU member countries.

    Night vision glasses

    Manuel Ott demonstrated a pair of NIVIS 2 night vision glasses during in the evenings. As a first impression they were quite unbelievable since one could see with them in total darkness. Because they were worn like regular eyeglasses one expected to see as usually but the degree of visual field was limited to only 30 degrees. For a person with loss of central vision they are not so good but for one who has about the same size of tunnel vision they work quite well.

    Visit to Warsaw old town

    Later at Thursday night, the whole happy and unique group went to see the old town by night with the guidance of Michal, Michalina, Pawel and Jacek. For some people it was quite challenging because it was really dark to move around easily in the crowd. But with help from each other we managed very well. We listened to the street artists and spend an enjoyable moment in a tavern by the Market Square.

    Meeting with Low Vision Specialist

    On Friday afternoon, there was a meeting in school for blind children with two teachers. The discussion was in a classroom of the school and we learned more about the teaching methods for visually impaired children.

    It should not be only a lecture but more an exchange of information. First of all it was clarified what "rehabilitation" really means the teacher's point of view.

    The experience of the participants in their own countries were discussed. e.g. rehabilitation is required, but when is the best time to start it? Rehabilitation means not only mobility training such as reaching new places, etc.

    After the lecture some technical aids were shown by the teacher. This could be simply aids for household, special glasses and magnifying glasses, but also assistive programs and devices for computer etc. The teachers stay up-to-date through information they receive from abroad and by Internet.

    Visit to the Central Park and picnic

    On Saturday afternoon we took a bus with RE delegates first to the beautiful and peaceful park right in the centre of Warsaw. After that we headed outside of the town to the countryside. There we had good barbecue, refreshments and we especially enjoyed discussing with RE delegates.

    We returned back to school well before midnight, leaving the RE delegates in the nearby hotel, and continued having great time together until quite late.

    Visit to automobile museum

    On Sunday morning a trip to a automobile museum was arranged. The TV was also there to make a report about REY. On the way to the museum we have had a serious and long discussion about the future of REY and the sense of be organised officially. Even if nobody can drive a car due to RP it was interesting to see the old cars with their specific history. A discussions about "given up driving", "mobility" or "public transport" had been great but there was not enough time.

    Conclusions

    All the participants thought there was enough free time between the meeting. The overall atmosphere was very friendly, relaxed and filled with humour. For such a group, all having the same cause of vision degradation, it was very easy to relate with each other right from the beginning. There was no need to explain anything, just to be oneself. Especially enjoyable and relieving were the stories about funny situations that some of us had to experience with their RP.


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