A Word from the Editors

We had a wonderfully inspiring meeting of parents and parent groups in South Africa (May 23-25, 1997). It was a great surprise to all of us who joined that meeting to find more than 200 attendants gathered in the large auditorium of the Johannesburg hospital. We all were to experience a perfectly organized and extremely stimulating program about medical and psychosocial issues on childhood cancer. We were also able to visit the pediatric cancer wards of the Johannesburg Hospital as well as Baragwhanath Hospital in Soweto and saw the differences of both clinical settings. The article by Dr. Cohn makes the problems South Africa still faces very clear to the reader.
ICCCPO also held a general assembly meeting in Johannesburg, where the new board was elected (s. last page) and decisions have been made as to which tasks should be completed this and the coming years (s. annual report).

We are looking forward to welcome you at the SIOP Conference in Istanbul in September 1997, where ICCCPO organizes together with the Turkish group a parents meeting and a workshop on setting up and maintaining parent support groups, or at any other ICCCPO meeting (for more information: see Announcements).

Contributions to the next newsletter can be sent to the editors (if possible on diskette in Word 7 or WP 5.1) before 1st of October 1997. Last but not least we would like to ask your help in spreading this newsletter and in making other organizations aware of ICCCPO. 

Marianne Naafs-Wilstra 
Gerlind Bode
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ICCCPO News

Membership
ICCCPO wants to be the voice that advocates for all children with cancer in the world and therefore invites every interested country to join in order to help, learn and assist each other. We want to make sure that every child has access to potentially life-saving treatment. Together with the professionals of the pediatric oncology team, parents and parent organizations worldwide need to work together to help families throughout this most difficult period - no matter what the outcome. Thus, hand in hand, we can make a difference! Education, help and assistance is not far away. If you are not a member already, you may register to become a member of ICCCPO. 
The annual membership fee is $500 for a nation. If there is more than one group in your country, you can split this amount (however, one nation, one vote). But money, or rather, the lack of money, should not prevent you from joining the international confederation. If your organization does not have the financial means, please indicate this in your application. It is a question of solidarity that those groups who are able to pay more take care of those who cannot. 

New Members
ICCCPO has grown to a worldwide organization. At the last General Assembly five new members were accepted:
-IASO, a local organization in Thessaloniki, Greece
-Kinder-Krebs-Hilfe Dachverband, Austria (national)
-Child Cancer Foundation New Zealand (national)
-Associacion Venezolana de Padres de Ninos con
Cancer, Caracas, Venezuela
-Children's Cancer Association Japan (national)

Moreover, the General Assembly gave the Executive Committee mandate to accept the following four organizations as member once the proper documentation has been received:
-Zvoncica, a local organization in Beograd,
Yugoslavia
-Cancer Plus, Ireland
-Sanus, Croatia
-Royal Orthopaedic Hospital Bone Tumour Service, local group in Shropsire, United Kingdom

Finally the General Assembly assigned associate membership to Cancer Care Society, United Kingdom, and Pro Hope Society, Brasil.

The ICCCPO Bibliography

With the help of Candlelighters Canada, ICCCPO will prepare and distribute a catalogue of all resources by parent initiatives. Please forward your published resources to:
Candlelighters Childhood Cancer Foundation
Canada, 55 Eglinton Avenue East, Suite # 401, 
Toronto, Ontario M4P 1G8, Canada. 
Kindly accompany this resource with an annotation in the original language and in English! 

Newsletter in translation
Spanish and Italian versions of previous ICCCPO Newsletters are available at the Secretariat in Sweden. We are looking forward to receive any translations into other languages! 

Scholarships for traveling to ICCCPO meetings
Members of parent groups from less privileged countries can apply for travel scholarships to any of the ICCCPO meetings.
With the generous support of the Swedish parent group "Barncancerfonden", ICCCPO is able to provide travel scholarships for those parents who otherewise could not afford to attend the ICCCPO meetings.
This money was provided by a grant of a Swedish pharmaceutical company to "Barncancerfonden". It means that one or two travel scholarships each year can be granted.
Applications should be sent to:
Marianne Naafs-Wilstra (Vice Chairperson)
Achterdijk 85, NL 3985 LA Werkhoven, 
Fax: + 31 343 551969
The application should:
- state name and address of the person applying
- his/her function in the parent initiative
- the full address of the parent initiative and
- its founding date (number of members)
- be accompanied by a letter from the parent initiative that states the necessity of the support.
Please write clearly (type written or in printed letters) and in English!!
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SIOP- Meeting - Sept. 23-27 in Istanbul, Turkey

Preliminary Program of Parents Meeting (ICCCPO)
Monday, September 22, 1997 
Place:  Our Children Leukemia Foundation, Istanbul (Dept. of Peadiatric Hematol./Oncol Istanbul University)
15:00 Meeting of all parents 
   Get-together, introduction of ICCCPO 
   Visit of the Clinic
   Dinner
Tuesday, September 23, 1997
Room: Topkapi B 09:20 -12:00   Chair: M. Chesler, G. Nogay
09:20 The International Confederation of Childhood Cancer Parent Organizations (ICCCPO) - an introduction  (Marianne Naafs-Wilstra, Netherlands)
09:35 The establishment and role of a parent group in a less privileged country  (P.S. Gülcan Nogay, Turkey)
09:55 Activities of the Children's Cancer Association of Japan  (Keiji Iwata, Japan)
    10:15-10:45 Coffee Break
10:45 Group dynamics and leadership  (Pia Bonini Serrafero, Italy)
11:20 Camps for children with cancer  (Christine Wandzura, Canada)
     12:00 -14:00 Lunch Break
Room: Topkapi B 14:00 - 17:00   Chair: G. Bode, K. Iwata
14:00 Psychosocial support in the treatment of children with cancer - an overview (John Spinetta, USA)
14:45 Workshop: Goals and limits of parent support groups  (Mark Chesler, USA; Marianne Naafs-Wilstra, NL, Gerlind Bode, Germany)
Discussion and conclusion

The conference language is English

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