deutsch tschechisch ungarisch

P r o R e t i n a Deutschland e.V. Selbsthilfevereinigung von Menschen mit Netzhautdegenerationen

Euro-Tandem-Tour 2004

from 07th June until 17th June 2004

Project description of the ETT 2004 - Berlin-Pragueue-Vienna-Budapest -

1. Short description of the project

Euro-Tandem-Tour 2004 - Berlin - Prague - Vienna - Budapest - from June 7, 2004 until June 17, 2004.

30 Tandems, with seeing pilots and partially-sighted or blind co-pilots plus some individual cyclists (substitute pilots) are cycling, in the course of the EU expansion and the existing city partnerships, under the sign of the European flag from Berlin (GER) via Prague (CZ) and Vienna (A) to Budapest (H). The aim is to introduce the Western European self-help organizations to the two Eastern European countries Czech Republic and Hungary, especially directed at people concerned with retina degenerations (RP - Retinitis Pigmentosa, Usher syndrome, juvenile macula degeneration and other RP forms) and to initiate, develop and support joint research and therapy approaches.

The starting signal will be given on June 7, 2004 in front of the Reichstag in Berlin by the President of the Bundestag, Wolfgang Thierse, and the current mayor of Berlin, Klaus Wowereit, besides other patrons.

(The participants will take a message from the mayor for both partner cities Prague and Budapest and will hand those to the cities' respective mayors.)

2. Applicant

PRO RETINA Germany e. V. (regional unit of the Retina International), with headquarters at Aachen

- see self-portrait of the Pro Retina Germany e. V. (4 pages).
Responsible contact for the project ETT 2004 is:
Mr. Horst Schwerger, Manager Association Communications, 73765 Neuhausen/F., Strohgäustraße 9.
The Pro Retina Germany e. V. is a self-help organization of patients diagnosed with retina degeneration.

Aims of the self-help organization are, among other things, to support and counsel the patients on coping with everyday life, to organize patient symposions, to support research, to publish research results and eventual therapies, to maintain contact to national and international retina organizations (for ex. DBSV), to organize international sports events for handicapped people.

3. Foreign cooperation partners

Retina interest groups

Czech Republic:
1. Prague: the Ophthalmologic Hospital of the Charles University.
2. Pro Retina Interest and Cooperation Partner Dr. Zora Dubska.
Other contacts: Dr. Hana Langrova, Director Prof. Dr. Filipec.

Hungary:
1. Budapest: the Ophthalmologic Hospital of the Semmelweis University.
2. Pro Retina Interest and Cooperation Partners: Dr. Agnes Farkas and Dr. Rita Varmas.
Other contacts / cooperation partners in Hungary:
Miklós Arpásy, President of the Paradicsom Cultural Association and Ildiko Somogyi, Hungarian RP Association

Austria:
1. Vienna: The University's Ophthalmologic Hospital, eye specialist Prof. Dr. Susanne Binder.
2. Vienna Association for the Blind, Ms. Liliana Prerowsky.

Note: The University's Ophthalmologic Hospitals are currently serving as first contact points in order to reach the people concerned, the patients with retina degenerations and their relatives, as they are recorded there.

4. Date for signing the cooperation agreement for the project ETT 2004:

The cooperation agreements have been prepared and are currently being checked by our partners. They will need some more time for gathering the consent of their bodies and/or for implementing the necessary infrastructure (such as Retina Czech Republic in Prague). (For this, we are asking for prolongation of the deadlines for the project agreements.)

5. Other foreign project partners

Besides the three named project partners (Czech Republic, Hungary, Austria), there will be tour participants and helpers from the following organizations / initiatives (see list of participants): Association des Aveugles d'Alsace et de Lorraine, Belgische Confederatie voor Blinden en Slechtzienden (BCBS) and Confèderation Belge pour Promotion des Aveugles et Malvoyants (CBPAM), Retina France, Retina Swiss, umbrella organization Retina Europe, umbrella organization Retina International.

6. Details on support for the project from official authorities of the destination country (non-material, material, financial)

Receptions and discussions at the town halls / parliaments with delivery of the petition (see petition paper) and the request for enlargening the rights of handicapped people, for developing social models and so on.
City sightseeing tours (transport association) at Budapest, Prague, Vienna.
No financial promises have been established so far.

7. Background and justification of the project

During the European Year of Disabled People 2003, the Pro Retina Germany e. V. together with its European partners, the Association des Aveugles d'Alsace et de Lorraine, the Conféderation Belge pour la Promotion des Aveugles et Malvoyants (CBPAM) and the Belgische Confederatie voor Blinden en Slechtzienden (BCBS), organized a petition tour from Strasbourg to Brussels. With this petition for the European political institutions we wanted to demonstrate which deficits/discriminations the approximately 10 million partially-sighted and blind people in Europe have to face in everyday life. The representatives assured us investigations, controls and remedies.
After the EU enlargement in June 2004, the Czech Republic and Hungary will become the first Eastern European EU member countries. Together with them, we intend to put into practice our tandem symbol for a successful "togetherness" within Europe. We will cyle from Berlin via Prague and Vienna to Budapest from June 7, 2004 until June 17, 2004. The Pro Retina Germany e. V. is going to prove once more what disabled, handicapped and underprivileged people can achieve when experiencing the society's solidarity. As we bring together seeing people (pilots) and partially-sighted/blind people (co-pilots) from Belgium, France, Luxembourg, Austria, Czech Republic, Switzerland, Hungary and Germany to become successful sports teams, we wish for political, institutional and social tandems to be established in everyday life.

8. Projekt aim

Set up retina self-help organizations - concerned people working for concerned people. Demonstrate the contributions and achievements of self-help organizations: Discuss social, professional and private issues in regular meetings; exchange information; counseling / advising and practical help for concerned people, especially in the social and professional areas. To call on all social groups, institutions, associations, organizations and public facilities to discuss the situation of disabled people (here: people with retina degenerations). Suggest handicap-friendly usage of all public areas and support barrier-free access to all public facilities, ensure barrier-free usage of all information and communication facilities. Suggest requirements for a European-wide network of patients / people concerned and university hospitals all over Europe.
Promote a European social model based on tolerance, understanding and integration instead of exclusion.
Draw the public attention to the right of disabled people to participate unrestrictedly in public life and to discrimination protection.
Develop and agree on basics for joint congresses, symposions and meetings with responsibles of the organizations.
Enjoy international sports events for disabled people (here: tandem tours) in multicultural groups; encourage other or similar projects within Eastern Europe and all European countries. With the aid of the media and representatives from the political and economic public, we are aiming at informing a broad public about eye diseases caused by hereditary retina diseases and presenting strategies for coping with said diseases.
A further aim will be to enlargen and tighten the Western European network of doctors, scientists, patients and their relatives, which has been existing for more than 20 years now. and to expand it towards the Czech Republic and Hungary, in order to press ahead with the European and worldwide research on eye diseases and their cures.

Due to the countries' individual border regulations, the activities throughout the past years were limited to Western European countries like Belgium, Germany, England, France, Italy, Luxembourg, the Netherlands and Switzerland.

Through the enlargement of the European Union towards the East and with the integration of the Czech Republic and Hungary, new perspectives present themselves for the retina organizations in the fields of self-help, honorary posts and the joint mastering of the fate between the people concerned.
German aid manufacturers (they support our tour through sponsoring) are organising an aid exhibition with their modern technical, optical and electronic devices. People concerned will have the opportunity to test various products personally during the events (at Prague and Budapest).

We are, simultaneously, using the big chance and answering the big challenge of offering support and know-how to the people concerned in the Czech Republic and Hungary to enable them to reach the same level in the treatment, care and support of handicapped people within a very short time.
We hope to acquaint us with the connecting points between politicians and responsibles / representatives from the handicapped people during various discussions. We further intend to inform the people interested about the current standards in the Western Europan policy for handicapped people.

9. Target group of the project

The people concerned with retina degenerations and their relatives;
Eye specialists in A, CZ, GER, HU;
Help diminish the worries of normal sighted people when confronted with handicapped people. Responsibles of all administrative bodies and institutions shall be informed about partial sightedness and blindness, obliging them to ensure the facilitation of everyday life for the people concerned through legal steps;
Responsibles of politics, sciencs, industry and research shall co-ordinate and intensify retina reseach through Europe and the world and work out efficient therapies;
The public/The society shall be informed during the Tour and sensitized towards hereditary retina degeneration and its consequences - partial sightedness and blindess.
From the responsibles of the universities (Prague and Budapest) patients counseling offices need to be established, modeled on the successful ones at the Regensburg University (Ms. Prof. Dr. Birgit Lorenz) and the Tübingen University (Mr. Prof. Dr. Eberhart Zrenner). These counseling offices need to offer the patients medical counseling as well as psychological and social care.
(These new counseling offices incur costs which need to be borne by the hospitals and the state institutions, therefore, some clarifying discussions will be necessary.)

10. Implementation

Berlin is partner city of Prague and Budapest.

A retina organization does not yet exist in Prague but personal contacts have been established during the past two years with Ms. Dr. Zora Dubska and Director Prof. Filipec - both working at the Ophthalmologic Hospital of the Charles University.
A strong regional group of the Pro Retina Germany e. V. exists in Berlin. Their chairwoman, Ms. Hannelore Schmidt, and her committee members intend to strengthen the city partnership Berlin-Prague together with the members of the Retina Czech Republic which will be founded during the tour and to encourage and maintain mutual visits.
The following events are scheduled for Prague:On 10 June 2004 we will cycle with our tandems to a reception at 09:00 a.m. at the Prague town hall with the mayor Dr. Pavel Bém where we will present our petition, followed by discussions with both the mayor and representatives of the municipal council about the situation of partially sighted and blind people in Prague. Other organizations for handicapped people will be invited to participate in these discussions as well.
At 11:00 h there will be a reception at the National Chamber.
We will cycle to this reception as well. At the parliament, after the reception with its president, Mr. Dr. Lubomir Zaoralek (patron), we intend to conduct a discussion with the members about the situation of partially sighted and blind people in the Czech Republic.

At 13:00 h, the Open Day will start at the Ophthalmologic Hospital of the Charles University (see program draft), an information event which is being supported by the specialists Dr. Hana Langrova, Dr. Zora Dubska and Director Prof. Dr. Filipec.

After the reception at the parliament, the first chairman of PRO RETINA Germany, Mr. Kurt Schorn, as well as some responsibles from the Tandem-Tour, will be present at the Open Day in the university lecture hall for the whole duration of the event.
At 14:00 h the transport association Prague invites participants of the tour to a two hours' sightseeing trip around the city. Afterwards, the participants will join the event at the Charles University to participate in the discussions.

There is already an interest group at Budapest, the Retina Hungary. Written contacts have been established with Mr. Miklós Arpasy (himself partially sighted), President of Paradicsom Cultural Association and Ildiko Somogyi, Hungarian RP Association.
(President Arpásy confirmed the Hungarian teams' participation in the ETT 2004 with an e-mail at the beginning of November, mentioning their difficulty to come up with the full participation fee for those two teams. Therefore, we promised him a reduction of 50% on the participation fee for the Hungarian teams.)

Sightseeing day at Budapest on 16 June 2004:
We intend to organize this day similar to the Prague event. The Retina Hungary already confirmed that they are prepared to take over the organization at Budapest. The Hungarian eye specialists, Ms. Dr. Agnes Farkas and Ms. Dr. Rita Varmas from the Ophthalmologic Hospital of the Semmelsweis University Budapest, have confirmed their participation in the event. And Prof. Dr. Zrenner from the Tübingen University has also offered to be part of the event. We will arrive at the town hall at 09:00 h and continue to the parliament before 11:00 h. The "Open Day" events at the Semmelweis University are scheduled to start at 13:00 h. One of the visiting speakers during the events will be Prof. Dr. Eberhart Zrenner from the Ophthalmologic Hospital of Tübingen University.
A two-hours city sightseeing tour is planned for 14:00 h.

The Vienna event day will be supported by Vienna's mayor Dr. Michael Häupl, patron of the Austrian team. Agreements on the reception have not yet been made. The same applies to the arrangements with the President of the Austrian parliament, Dr. Andreas Khol (patron). The Austrian Chancellor, Dr. Wolfgang Schüssel, has promised the participation of Ms. Maria Rauch-Kollat, Federal Minister for Health and Women. She will organize the program (Ms. Kollat has a blind daughter herself).
We have also contacted the second chairwoman of the Vienna Organization for the Blind, Ms. Liliana Prerowsky. She has confirmed her commitment and support.

11. Time frame

Time frame for the project planning: From 25 June 2003 (date of the submission of the application at the Paritätische Wohlfahrts-Verband Frankfurt) until 31 May 2004;
Definition of the itinerary (itinerary as stipulated in the logistics paper, seven daytime stages, total distance approx. 1,060 km;
Fitting in (3) sightseeing/event days (Prague, Vienna, Budapest) to visit the cities and get together with its people;
Write to and invite the tour participants and contact auto service companies to hire minibuses; Win patrons and sponsors (for every participating team, a public figure each has agreed to act as a sponsor for said team);
Set up the sponsoring and win sponsors; Set up contacts to the political and municipal institutions like town halls, presidencies, embassies and authorization authorities of the countries for the authorizations concerning transport and communication.

Contact the ophthalmologic hospitals / universities as well as the people concerned with RP and MD in the Czech Republic and Hungary;
Implement and update our website;
Produce national translations (CZ, H);
Win supporters and helpers who will be in charge of / looking after the participants and organising during the Tour.

12. Tasks of the people working in the project

Planning of and organization for the whole tour through honorary members of the Pro Retina Germany e. V., Communications Division.
The 30 tandems and individual cyclists (replacement pilots) will be accompanied by approx. 15 helpers in 7 minibuses (care/supply, maintenance, baggage, ambulance) and 4 interpreters (Czech, Hungarian, English, French) plus a mobile internet station.

13. Use of the directly assigned materials for the implementation of the project

Full board and beverages during the tour, overnight stays, travelling expenses (rent and operation), fees, compensations, additional nutrition (vitamins), insurance, fees for transport authorizations and so on (see detailed cost planning).

14. Planning for lasting effects and influence of the project

An active exchange between the Czech Republic, Hungary and Germany shall be established, including invitations to symposions and information events.
The exchange of information and public relations shall be supported via our websites www.tandem-pro-retina.de and www.pro-retina.de. Furthermore, we are offering our know-how, our technical knowledge (for ex. about devices and aids) and information material like flyers and brochures as well as the transfer / exchange of structures in setting up self-help organizations (see Pro Retina guidelines).
Our greatest concern is to win the traditional associations and organizations for the blind and the partially sighted for cooperation, for ex. for statements during receptions or participating in small stretches of the tour distance. From the tour effects of the ETT 2004 and its group dynamics we intend to derive new international projects with firm agreements (for ex. for 2005 in Hungary / Czech Republic or here in Germany).
For example, a "Tour of Germany" from Flensburg to Konstanz is being planned by Pro Retina Germany e. V. for June 2006 on the occasion of the ETT's 10 years' jubilee. This jubilee tour can be realized with similar logistics as the previous ETT's (with exception of the ETT 2004). The most important aim of the Tour ist to strengthen and enlargen the new contacts in the same way as done with the Western European countries in the past. Also with the Western European countries, we started from scratch 20 years ago. In the past two decades we have established exceptional relations and a constant information exchange on all levels of the challenges for handicapped people. One example for this is the joint commitment to the sports for handicapped people - Tandem-Tours - which we have successfully organized eight times in the past. The ETT 2004 is going to be the 9th International Tandem Tour. Another important angle is to create a basis for the two Retina organizations (Czech Republic and Hungary) to enable them to become a member of both Retina Europe (14 member organizations, co-ordinator: Dr. Rainald von Gizycki of the PRO RETINA Germany e. V.) and Retina International (40 retina organizations worldwide , president: Ms. Christina Fasser from Zürich, Switzerland).
Both Retina Europe and Retina International are umbrella organizations and mainly concerned with the research work of international scientists, whose results are published by Retina Europe and Retina International. The Hungarian and Czech members will also have the opportunity to participate in the world congress of Retina International, taking place every two years. The next congress is scheduled from July 1 until July 3, 2004 at Nordwyk, Netherlands.

Neuhausen/F., set up Nov/09/03 / updated Nov/14/03 / translated Dec/16/03
Horst Schwerger/Gerda Weyhreter/translation: Julia Kloes