FIRST REGIONAL MEETING OF PARENT ORGANIZATIONS OF EASTERN EUROPE

St. Petersburg,
August 14, 2004

OFFICIAL REPORT ABOUT THE MEETING Katerina Kiseleva, Director of the "Children and Parents Against Cancer" organization (SPb), which hosted this meeting

The first international meeting of representatives of parent organizations from Eastern Europe was held in St. Petersburg on August 14, 2004, Saturday. It took place under the patronage of the International Confederation of Childhood Cancer Parent Organisations (ICCCPO). ROO "Children and Parents Against Cancer" and its executive director Katerina Kiseleva received the participants of the meeting in their office.
 

The foreign colleagues who visited us were Marianne Naafs-Wilstra, executive director of the Dutch childhood cancer parent organization, and Gerlind Bode, executive director of the German Leukemia Foundation. Other participants of the meeting came from Volgograd, Severodvinsk, Chelyabinsk, and Simferopol (Ukraine).

All guests told about the experience of their organizations and specificity of work in their regions. In the first half of the day, the discussion concerned the work of the organizations with parents, doctors, sponsors, and authorities, as well as associated problems. The problem of fundraising in parent organizations and recruiting new professionals and volunteers at various levels evoked a lively response and active exchange of views.

As a result of the discussion, plans for the nearest future were outlined:

1) to exchange the results of the meeting; to develop the principles of joint work;
2) to organize and implement an interregional project;
3) to create and issue a joint electronic periodical (newspaper or journal);
4) to develop the Working Code for Parent Organizations;
5) to create a Web site presenting the participants of the meeting;
6) to create an interregional network (this idea was earnestly supported by all participants of the meeting);
7) to prepare an action "Resources for Parent Organizations", which would include a number of seminars and trainings concerning fundraising, information resouces, and volunteer work (for groups of parents, doctors, and volunteers).

Our foreign colleagues were deeply impressed by the work of Russian and Ukrainian organizations. They confessed that they had encountered the same problems when creating their parent organizations 20 years ago:

 => lack of financing,
 => shortage of volunteers,
 => public opinion, which rejected open discussion of cancer,
 => lack of information,
 => poor mutual understanding of doctors and parents,
 => lack of contacts between organizations that represent the same region (the same country).

Most Russian and Ukrainian parent organizations started their work 6 or 7 years ago, but, as our foreign colleagues said, achieved outstanding positive results in this short time. This is why we can hope that together we will be able to do even more.
 

In fact, the discussion started as early as on Friday, in a bus, when our guests were going sightseeing to Peterhof and Tsarskoe Selo, suburbs of St. Petersburg. On Friday evening, there was a festive dinner, and its participants also enthusiastically spoke about their work.

 Therefore, when we officially met on Saturday morning, we instantly resumed our discussion of the topics that concerned all of us. It turned out that each region has its own problems in addition to our common problems. And, by the way, the participants of the meeting consulted each other on the possible ways of solving these problems.

When we discussed the problem of contacts with the authorities, all the participants reacted very emotionally. And everybody supported the opinion that our organizations should enjoy full rights as partners in relations with the authorities at various levels. By the way, if an association of Russian parent organizations could be created in the future, this would help us solve our problems at the highest level.

Our foreign colleagues praised this meeting very highly: according to them, our organizations showed that now they have reached a fundamentally new level in their development.

So, the two days of our St. Petersburg meeting have passed. Indeed, two days, although the program mentioned only one working day, August 14. But active and diverse work also took place during the previous day, on August 13: first during the journey to Peterhof and Tsarskoe Selo, then in the restaurant, and finally at the hotel. And I must say that the "corridor conversations" were almost as fruitful as the worktime.

The meeting was a success, no doubt about it. I'll try to sum up its results that were the most important for myself.

Firstly, I personally saw my co-workers whom I had previously known only by mail or had just theoretically known about their existence.

Secondly, our exchange of the working experience was extremely rich and helpful. In particular, we shared our ideas and practice concerning the organization of charity actions.
 

So it happened that Maria Batova, who initiated and organized the Crimean Nights series of concerts, was in St. Petersburg at the same time. The participants of the meeting invited Maria to participate in our work.

I must say that the experience accumulated by other societies was sometimes so different from ours that at first we just could not understand each other: we needed some time to clarify the meaningful details and to agree on the terminology. Actually, those assembled round the table at our meeting represented two large groups; in my mind, I called them West and East.

The "Westerners" pay most attention to individual membership in their organizations and rely mostly on themselves, without any illusions about the authorities. They help the families with whom they establish bilateral relationships, and this help is mostly individual. They exist under the conditions of information openness, where an oncological diagnosis is usually known both to the child and to the society. They actively use or try to use contemporary information technologies.

As to the "Easterners", they usually remain faithful to the traditional collectivism. They work as global organizations, which by definition include all families where a child falls ill with an oncological disease. In their work, they have to go through long and difficult fighting in order to receive recognition from the authorities - and the amazing thing is that they gradually receive it, and then also get certain help and cooperation from the official structures. The main form of assistance is not individual (although it is also present) but social: creation of rehabilitation centers, camps, workshops; help to hospitals in buying medicines and equipment for all patients; etc. They have gained working experience under the conditions where announcing the diagnosis in public is difficult or impossible. To make up for the lack of information technologies, they communicate with the press, book publishing companies, etc.

(Here I must stress that the naming of these two groups is more or less arbitrary. Actually, the work of Western European organizations combines both forms, but in our reality they are differentiated between the two aforementioned poles. It might seem that European societies are even closer to the second model, because they are trying to cover the widest social groups, retain close contact with government agencies, etc. However, the style of thinking, the priorities, the values in the West are oriented at everybody's individuality rather than at the society as a whole. A personality is by definition more valuable than a community. This was easily seen during our meeting.).

Evidently, both groups have something to learn from each other. I think that mutual visits and (planned or spontaneous) meetings would be perfect for such learning during practical communication.

Thirdly, this meeting marked the beginning of our common existence in a united Web space. We have already started to implement the decision about the creation of an information network: our Mission promised to integrate the addresses of Russian organizations that participated in the meeting into the existing information network uniting similar Ukrainian organizations (both parent and volunteer ones).

Then, we planned a joint project on resources for parent organizations. In our opinion, this is another wonderful chance to share the strong sides of our experience with each other.

At the same time, doubtlessly, the weak point of the meeting was that only several Russian and one Ukrainian organization were among its Eastern European participants. But this did not depend on the ICCCPO or on the receiving party. It is just a pity that representatives of some organizations could not participate because of their circumstances and others were not active enough.
 

The possibility to visit the Child Oncohematology Department at the Center for Advanced Medical Technologies and to see its head Dr. Margarita B. Belogurova was very valuable for me.

Thank you, Marianne and Gerlind. Thank you, Katerina Kiseleva and all our friends from St. Petersburg for this chance to meet each other!