A note from the editors

This is the first edition of our international newsletter, which we plan to send around the world twice a year. We hope to reach as many parents as possible to start the international network. 

Please help us by making photocopies for all those who are interested in this newsletter. For practical reasons, this newsletter will be written in English, and we ask you to get your own translations done if necessary to reach all parents in your country. We would like to ask you to send us your translation because it might be helpful for others, too. 

We will start this edition with two lectures from the recent parents meeting at the SIOP Conference in Paris in September 1994. The other lectures will be printed in future newsletters, as we think this information is valuable for all parents. It has become a tradition that parents meet together with the physicians of the International Society of Pediatric Oncology (SIOP), and we are happy to announce the next meeting in Montevideo, Uruguay in October 1995 (see announcements), which will give the South American groups a fair chance to attend. In 1996, the SIOP Conference will be held in Vienna.

We here include the invitation to the next General Assembly meeting of the ICCCPO which is followed by the 25th anniversary of the Candlelighters in Washington (July 9-12 and 12-16, 1995). We hope to see you there.

If you have any contributions, suggestions or whatever you think others should share with you and should be published in this newsletter, please send it to us. Also keep us informed about change of addresses or of any organization that does not receive the newsletter yet.

We hope that this newsletter will become a link of ideas across the borders. It can be more valuable and more colorful if we can include contributions from all over the world. The deadline for the next edition will be April 20, 1995. Make sure that your contribution will be sent to either of the two editors' address:

Marianne Naafs-Wilstra Gerlind Bode
Achterdijk 85 Joachimstraße 20
3985 LA Werkhoven, Netherlands 53113 Bonn, Germany
fax + 31 3437 1969 fax + 49 228 218646

We wish you all a wonderful holiday season and a happy New Year!

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A Word from the President

Love and affection for children with cancer has promoted parents to found the International Confederation of Childhood Cancer Parent Organizations (ICCCPO).

The first of May 1994, nineteen organizations from Europe and the America's have signed the founding deed of the Confederation, and until today many organizations have applied for membership.
This newsletter is our first expression of working together, and by this we hope to increase the social awareness and solidarity for cancer sick children and their families.

Why did we found the ICCCPO?
* united we can guarantee our children's rights to live and mature in psychological, social, educational and spiritual terms,
* as an International Confederation we are a pressure group, that can deal with international agencies which decide on health policies concerning pediatric oncology,
* we wish to promote the exchange of opinions and experiences among the existing parent organizations and help to start parent groups in those countries where such initiatives are not yet existing,
* as a group we also want to support parents and siblings of sick children. 

In the international "Fight against Cancer" childhood cancer is often left out or not mentioned. However, survival rates of the most frequent types of childhood cancer are at almost 70% if these children are treated in specialized Pediatric Cancer Units, which are able to apply the optimum care. The survival rate drops dramatically in centres where the level of care is less then optimum. That means too many children that could be saved still have to die of cancer.

Pediatric Cancer Units should be run by pediatric oncologists with specialized nurses, including surgery, radiotherapy, rehabilitation and bone-marrow transplantation facilities as well as teachers, psychologists and social workers. The units should treat enough patients, thus optimizing their experience and providing the best care.

We, the parents, are experiencing the pain of having a child with cancer. Thus we wish to help saving all children with cancer with all our means. 

Both the Executive Committee, formed by representatives of the United States, Sweden, Italy, the Netherlands, Germany, Venezuela and Spain, and the entire International Confederation want to listen and to be listened to. We wish to collaborate with everyone and have everyone collaborating with us. We are willing to help, and we need help. We believe that our existence is necessary for the development of pediatric oncology worldwide.
We wish to work together with professionals in the field of pediatric oncology and the society at large in order to obtain:
- the establishment of a sufficient number of well equipped Pediatric Cancer Units,
- the acknowledgement of pediatric oncology as a specialization for doctors and nurses,
- the enhancement of national and international childhood cancer registries and data banks for bone marrow donors,
- a positive integration of parents and siblings in the therapies and integrated care teams in order to prevent distress and anxieties caused by the life threatening disease,
- an atmosphere of affection, solidarity and support surrounding each child, so that he may feel his life and personal development is important, not only for him and his family, but also for the society.

As a Worldwide Confederation we want to achieve that all children with cancer have the same chances not only to survive the disease but also to become "healthy" again psychologically and physically and to grow up to mature adults and productive citizens.

Jesús Maria Gonzalez Marín, Chairman

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ICCCPO News

Membership

We hope that the newly established International Confederation of Childhood Cancer Parent Organizations will stimulate cooperation among different groups in the countries as we are all working toward the same common goal.

Any parent group who wants to apply for membership in the ICCCPO should ask the secretariat in Stockholm, Sweden, for sending an application form!

It was agreed by the Executive Committee that the annual membership fee should be $500 per nation. If your organisation wants to join but does not have the financial means, please notify this in the application. As an appeal to solidarity, nations willing to pay more thus help others who cannot afford this amount to join the international confederation. 

In this context we would like to thank AMGEN for the financial support of ICCCPO, which gave us a good working start.

Please notify the secretariat if your address is incorrect or incomplete.

Permanent Secretariat

The International Confederation needs to have a stable reference structure. That means we need a permanent address. 
And thus we would like to ask all groups wether any of them would be willing to host the Secretariat, provide office space and equipment and an English speaking secretary (part-time).
For more information write or call the provisional secretariat in Stockholm, Sweden.

Logo

We are still looking for a catching logo. Who has an idea? Who can help? Kurt Hansen (executive committee member) will coordinate all information coming in.

Addresses

If you would like to receive a complete list of parent groups known to us, write or call the secretariat.
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Miscellaneous:

The Barretstown Gang Camp 

In 1988, actor Paul Newman founded The Hole in The Wall Gang Camp in Ashford, Connecticut, USA, which every year enables over 800 children with cancer or serious blood diseases to enjoy a nine-to-ten day holiday with excellent but unobtrusive medical supervision. The camp is widely acclaimed by members of the medical profession by parents and friends of the children, and others who have visited it.

While the majority of the children have been Americans, groups of seriously ill children from France, Germany, Great Britain, Scotland, Ireland, Wales and Russia have also traveled to the camp, bunking with their American cohorts, the language and cultural barriers hardly mattering. The idea of having fun ... whether it be swimming, catching fish, horse-back riding, making a fool of yourself on stage or meeting a friend you will never forget .. was something that did not need any translation. When these foreign campers returned home, the change in many of them, their positive attitudes, their increased confindence, so impressed doctors and parents that Ireland and the United Kingdom became keenly interested in developing a similar camp to serve Europe. And so, in the summer of 1994, The Barretstown Gang Camp opened in Ballymore Eustace, Ireland, 128 children had a safe, fun-filled holiday of a lifetime.

The Barretstown Gang Camp at Barretstwon Castle in County Kildare, Ireland is a non-profit organization that provides a similar experience for children aged 7-15 from Ireland, the United Kingdom and Europe, located in the foothills of the Wicklow Mountains, 25 miles from Dublin and its international airport.

Children are referred by and or apply through their hospital. We are currently looking for parents and social workers who would be interested in helping to coordinate groups of children attending from their respective hospitals. It would be best if one person or group per country would be responsible for the coordination of all children wanting to attend from that country.

Please contact for more information:
Bev Moore, Camp Director
Barretstown Gang Camp
Ballymore Eustace, Co. Kildare, Ireland
Tel.: +353 45 64115 Fax: +353 45 64197
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L'Envol

L'Envol will open in Spring 1996 in the Forest of Fontainebleau. L'Envol is a European leisure and holiday camp conceived to entertain boys and girls between the age of seven to fourteen who have cancer and any other serious disease to give them an opportunity to enjoy themselves and regain hope. 
This wonderful project is inspired and will be executed in collaboration with The Hole in The Wall Gang Camp created by Paul Newman.

For more information, please contact:
Prof. D. Alagille
75, av. Denfert Rochereau
75014 Paris, France
Tel. +33 1 43543458 Fax: + 33 1 43542590

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