A word from the editor

At every General Assembly Meeting we have the duty and the opportunity to have one half of the board members up for (re-)election. This has given the board the possibility to have at a regular cycle new members enter with their perspectives and ideas while at the same time keeping the necessary stability and consistency needed for good reliable work. It is a very democratic rotating system which we believe has worked very well over the years. 

As one of the very few members still "left over" from the very beginning it was a natural process and "about time" for me to step back into the second row, to have another generation grow into the responsibilities we have prepared for them. As much as this was a rational decision for me it was emotionally a very hard one to make, as I personally can look back upon a number of very intense working years with a group of people that have become very good friends and whom I would not like to miss. But, as I will still be involved in the well fare of this organization as one of the editors of this newsletter, I am not "out of the picture" yet.
However, while our organization is growing every year with plenty of new members it also seems appropriate for me as one of the founding members at this point in time to lean back and give a brief overview of its history - realizing that many people cannot be aware of it: 

When we (the German group) started in 1992 with the SIOP meeting in Hannover (Germany) to invite people from organization similar to ours in Germany, we did not know yet that this was the onset for an international group of parents of children with cancer. We simple had wanted to get together and talk about what was our common interest. I do not quite remember how many groups were present in Hannover but there were certainly a lot of people in the room, parents, doctors, psychologists who showed much interest in this sharing. It was still a relatively informal setting (mentioned only with a paragraph in the program) with a couple of presentations from several countries such as Sweden, Italy, Holland, ... We brought our informative materials with us and invited each other to "steal" the ideas if they were good and worked. It was then that the Danish group introduced the little booklet "Chemo Kasper and his fight against the cancer cells" (Danish: "Kemomanden Kasper" to us. The simple - yet working story was quickly adapted by many other groups and got translated into so many languages by now (see under Miscellaneous for the most recent list) - one of the very easy ways of sharing ideas. 

The idea of forming an international body was in the air, and the Spanish group invited everybody for an international meeting in Valencia (Spain) in the Spring of 1993 where they had already prepared a set of statutes for such an organization. However, meeting as an international group and working together are two separate things - and as easy as the first one is, the second issue is a lot harder. It took some time to find a common language for the rules and regulations of an the international working group until they could officially be ratified in the Spring of 1994 in Valencia. 18 member nations signed the statutes and elected a board consisting of nine representatives, chaired by Jesús Maria Gonzales Marin from Spain. 

The early request for two major meetings each year - one in Spring for the General Assembly Meeting and one combined with SIOP, the international pediatric oncology meeting, could not be carried out over a long time as it became clear that it would be much too costly for every participating organization (let alone for ICCCPO itself which has only very little funds). Thus it was decided in 97 to concentrate on only one meeting per year which should combine the AGA with the meeting at SIOP. As we realized the impact we could make on the group of physicians, nurses, psychologists attending SIOP it became more and more clear that this would be "our place". In turn, for all parent members it is a great opportunity to take part in the scientific program offered by the professionals and thus be in close contact with the care givers of their children. 

Over the years (and with some tough lobbying on our side) the SIOP board has recognized the importance of the parents' input at their meetings and we are very happy now to see that this is acknowledged in all respects, e.g. we are given room and time for our sessions which have become largely shared sessions with the other professionals.

Again due to our financial resources it became necessary, however, to "compromise" in those situations where SIOP meets in very remote places - remote to the present majority of our members which are located in Europe and North-America - such as Japan in 1998 or Australia in 2001. We decided to arrange our General Assembly meeting in a central European setting (thus we met in Frankfurt in 1998 and will meet in Luxembourg in 2001). At the same time we will send a delegation of board members to be present at the SIOP meeting in those far away countries. This offers a very good opportunity for parent organizations in that particular part of the world to get together more easily. The success of the meeting in Yokohama insures us that this setup will work as well for Brisbane, Australia. 

And most likely, as the membership is growing, we might have to change these arrangements again to meet the needs of all organizations in the future. As we always say: We are flexible ... 

Gerlind Bode

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A note from the chair

On behalf on the Executive Committee we want to thank those who were present at the ICCCPO meeting in Amsterdam. Over 125 parent representatives from 42 countries met for three days and learned from informative lectures, posters and workshops. They shared their experiences, renewed friendships and made new contacts. We will publish some of the outcomes and presentations of the conference in the newsletter to inform those who couldn't attend.

The General Assembly ratified the application of 11 new member organizations (8 full and 3 associate), which brought our membership to 53 organizations from 43 countries. 

Gerlind Bode felt it was time for her to give up her seat in the Executive Committee. Gerlind is the one who stood at the very beginning of the international confederation. In 1992, on the occasion of the SIOP in Hannover, Germany, she invited parent groups from several countries in Europe. That is how it all began.

We can't thank Gerlind enough for the tremendous work she has done over the years. She organized several international parent meetings, most of them by "remote control" (Paris, Montevideo, Istanbul, Vienna), has been editor of the newsletter and supported ICCCPO with her expertise as a "networker" between parent groups and physicians from all over the world. Her contacts have been very valuable for ICCCPO. We are very happy that we will not loose Gerlind. She will stay committed to ICCCPO by remaining on the newsletter committee.

The Executive Committee welcomed a new and enthusiastic member on the board, Geoff Thaxter of the National Association of Childhood Cancer Parent Organizations (NACCPO) from the United Kingdom. 

The Annual Report 1999-2000 will not be included in the newsletter but can be obtained from the secretariat. It gives an impression of the activities of ICCCPO. It goes without saying that the Executive Committee cannot do all the work by itself. The support of the Secretariat in Canada is tremendous. But there remains a lot to be done, for which we need your help, input and ideas. The Confederation is not the Executive Committee but is you, the members. Write, e-mail, fax us, tell us about your successes, your problems, your needs. This newsletter, and hopefully very soon, our eebsite, are great media to share - so go ahead and use them. Also try to keep in touch with other member organizations, for instance by e-mail. If you would like to receive a list of e-mail addresses please turn to the Secretariat in Canada.

Together we can make a change!
Marianne C. Naafs-Wilstra,
Chair ICCCPO

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Membership fee and Solidarity

As you may well know the ICCCPO membership fee is $ 500 US per year per nation. This means: if there is more than one organization in your country, you can split the fee. You will also have to decide who will vote at the General Assembly for your country, because the ICCCPO bylaws say: one country, one fee, one vote.
There are organizations from less wealthy nations that cannot afford to pay the full fee. Therefore we created the possibility to apply for a reduced fee. 

At the same time, however, we make a strong appeal to our wealthy member nations and organizations to support other members by paying their annual fee. Some countries - Italy, The Netherlands - already pay for others, thus making it possible for them to be an active member of the Confederation and to retain their voting right.

We trust we can count on you!!! 
Solidarity is and will remain a key word in an organization like ours.

Marianne Naafs-Wilstra

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Miscellaneous

Chemo-Kasper Goes International:

The little booklet, The Chemo-Kasper - originated in Denmark - is now translated into these languages and available at the different parent initiatives of those countries, except for those set in ( ).

Radio Robby is available in the following languages:

Dutch, German, Portuguese
Do you know of any more? If so, let us know.

Matthew's World

At the SIOP Opening Ceremony "NKT Theaterproducties" performed the musical Matthew's World. NKT is a theater company comprised of young people who, under the leadership of experienced theater makers, perform successful family productions, most of which have a social theme. The theme of Matthew's world is "the forgotten child". All the songs from the musicals of NKT have been released on music cassette or compact disc in Dutch and English. 
For information:
NKT Theaterproducties
Ged. Singelgracht 16, 
1441 AP Purmerent
The Netherlands
Phone (31) (299) 434325, Fax (31) (229) 435297
e-mail: nkt@worldonline.nl

International Year of Volunteers 2001

The united Nations General Assembly proclaimed the year 2001 as the International Year of the Volunteers (IYV). This global recognition will allow countries the unique opportunity to highlight the achievements of generous and caring citizens. We encourage every group to consult the following websites for updates:
International Year of Volunteers: www.iyv2001.org

Now available from the Secretariat

The ICCCPO Bibliography, an annotated resource list of all publications by parent groups
Handouts of the various workshops
SIOP Guidelines for the organization of a Pediatric Oncology Unit and European Charter Child in Hospital
SIOP Psychosocial Guidelines, written by SIOP together with ICCCPO members (education, communication at diagnosis, therapeutic alliance, long term survivors, siblings, terminally ill children)
To keep the costs low, we prefer to mail these publications by e-mail!!

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Theme and Variations

is the subtitle of this year's SIOP-program

The theme is: our efforts towards the child - not only the child but the child suffering from life-threatening disease, from cancer.
One could also say: The theme is cancer.

But as true physicians we would not be satisfied by saying: we are treating cancer. 
We have the ambition not to treat the disease but to treat patients as individuals suffering from a disease: and this makes a big difference.

We are also aiming at curing patients and not only diseases. Children cured from cancer should be able to live a normal life, have families and have - if possible - a normal life expectancy.

So, the theme is the child. What are the variations?

The variations, for instance, are the different conditions under which the children live and can or cannot be treated. The differences between the conditions are considerable.
In May 2000, I attended the regional meeting of SIOP Africa organized together with CHOC, the South African parent organization. Hans-Peter Wagner, the chairman of the SIOP-committee PODC, was also there and presented figures about access to treatment. In the developing - or if you prefer the term - emerging countries, only about 15% of children have access to modern treatment which offers the option of cure. Many of the affected children are never seen by a doctor and die, undiagnosed and untreated. 

In September, just a few weeks ago, we celebrated in Germany the 20th anniversary of the foundation of the German leukemia research aid. This was for me the opportunity to give a review of what has been achieved in our country with the help of parents. With their help we were able to improve the conditions for treatment, care and research dramatically. 
Here we have again variations of the theme.

Variations mean that we are dealing with a spectrum of variables and that - like a composer - we have the opportunity and the power to put the variables together according to our needs and imaginations. This can be a process - and it will be a process - that takes time. But if we combine our efforts "Parents and Physicians against Childhood Cancer" we will be able to improve the variable conditions for our children which are at present still far from satisfactory for the majority world wide.

Let us be composers: We all know the theme and everybody should make his contribution in creating variations to the benefit of children with cancer.

Prof. Günter Henze
President of SIOP 
Chief of Pediatric Oncology, Charité, Berlin (Germany)

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