Letter from the Chair

It has been a great pleasure to meet so many of you - who found their way to Montreal to attend the ICCCPO Conference and General Assembly Meeting. Both informative lectures and workshops provided opportunities to representatives from many nations to share ideas and programs, problems and opportunities. Holding this ICCCPO meeting along with the SIOP Meeting was a very important way of ensuring that the voice of parents continues to be heard by clinicians. 

The last Annual General Assembly reflects the rapid growth of ICCCPO: nine organizations were accepted as full members, two organizations as associate members, representing Bangladesh, Brazil, Bulgaria, Egypt, India, Israel, Lithuania, Luxembourg, Russia (2), and the United Kingdom. Currently ICCCPO has 39 members and 6 associate members from 38 nations all around the world. 

The Executive Committee underwent some changes. Barbro Eriksson (Sweden), and Johan Sandal (Norway) both retired, Barbro after serving for five years, Johan after two years. Barbro and Johan, it has been a privilege to work with you and we thank you for dedicating so much of your time and energy to the international cause. We are delighted that with the election of David Orren (Israel) as member and Mokhtar El Harras (Morocco) as deputy member the Middle East and Northern Africa are represented on the EC. 

At this place I would like to acknowledge the indispensable contribution and support of the national organizations of the members of the former EC to the Confederation. These organizations (USA, Netherlands, Canada, South Africa, Sweden, New Zealand, Spain, Germany, Norway) have made considerable donations in kind (time, traveling and housing of EC members), and as a consequence of these and other factors we are able to run the Confederation more and more effectively, to grow in membership, to expand our programmes and services and to develop closer collaboration with SIOP.

The expanded membership presents ICCCPO with new challenges. Although the feelings and emotions of parents of children with cancer are universal, it has become evident that the problems faced by parents in different parts of the world show a vast difference - from the total lack of drugs on one end to the psychosocial needs of survivors on the other. No wonder that there is a broad variety of parent support groups and programs. The EC has identified several area's that need special attention: 1) communication systems with member organizations and organizations that have expressed an interest in joining ICCCPO; 2) financial support of organizations with limited resources to join the confederation and attend ICCCPO meetings; 3) financing ICCCPO's operations and programs; 4) collaboration with SIOP; 5) more focus on the problems in countries with limited resources.

There is a lot of work to be done and we are very pleased that at the AGA so many of you responded to our call for volunteers. We established a number of working committees - some of them already existed - each of them chaired by a member of the EC: Membership (Mark Chesler), Newsletter (Gerlind Bode), Fundraising (Simon Lala), Website & PR (David Orren), Strategic, Marketing and Business Plan (Christine Wandzura), Organization and Communication (Marianne Naafs) and Elections (Sadie Cutland). 

We need your help in other ways too! 
- The EC will meet February 10-12, 2000 in Barcelona. You are kindly invited to put forward items for the agenda. 
- Perhaps your organization would like to host the next mid-year meeting of the EC (Feb/March 2001). It is an excellent opportunity to meet the EC in an informal setting and to learn more the ICCCPO.
- Recently the Dutch Association, that hosts the coming ICCCPO Conference and General Assembly in Amsterdam, October 2000, in a letter has made an appeal to the solidarity of the financially stronger ICCCPO members and asked them to sponsor an attendee for the Amsterdam meeting. We strongly support the initiative of the Dutch group that is in the best spirit of the ICCCPO effort.
- As I mentioned earlier, we need more money, not only to run the organization and its programs, but also to financially support groups with limited financial means. Any ideas to find sponsors are welcome.
If you would like to lend a hand, don't hesitate to contact us!

Marianne Naafs-Wilstra
Chairperson of ICCCPO

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Annual General Assembly Meeting of the 
International Confederation of Childhood Cancer Parent Organizations

Wednesday, September 15, 1999
Palais Des Congres de Montreal.  Montreal, Canada

Member Countries Present: 
Austria / Canada / Finland / Germany / Greece / Italy / Morocco / Netherlands / New Zealand / Norway / Portugal / Romania / South Africa / Switzerland / United States America

Welcome and Introductions
The meeting was called to order at 10:00 hours.

Roll call of attendance (and membership status)
Austria / Canada / Finland / Germany / Greece / Italy / Morocco / Netherlands / New Zealand / Norway / Portugal / Romania / South Africa / Switzerland / USA
All the above are full members, are paid-up in their dues and are therefore eligible to vote at this meeting.

Minutes of 1998 AGA in Frankfurt
A review of the minutes took place and no errors or omissions being made they were passed.
Moved By: Johan Sandal, Norway
Seconded By: Rosanna Lupieri, Italy
All in favor

Officers' Reports
Chair
Mark Chesler reviewed the state of the Confederation. He identified the following issues facing the members of the ICCCPO: (1) Membership recruitment and sponsorship of poorer nations; (2) Internal operations and moving of the secretariat and the contribution of the Candlelighters Canada; (3) Enhanced communication via email and newsletter to bring information to the members; (4) An excellent program was put together for this year's parent's meeting - thanks to Marianne Naafs; (5) Working even closer with SIOP, through education of physicians and sharing their meetings (third time in the last five years of our existence); (6) Relationships are improved with member nations - Executive Committee members of ICCCPO have visited other countries to share and learn, and we have provided $12,000 USD for scholarships to nations with fewer resources to attend these meetings. ICCCPO invites wealthy countries to sponsor poorer nations and encourage sharing of invitations to other countries when having a meeting.

Vice Chair
Marianne Naafs-Wilstra reviewed activities of the year beginning with SIOP - Japan attendance and how they increased the awareness of activities of ICCCPO and CCAJ in Japan and Asia. There also were good learning opportunities for the Asian parents and improved working relationships with SIOP, their secretariat and the PODC committee. She is beginning to work with the Local Organizing Committee of SIOP for the meeting in Amsterdam.

Treasurer
Sadie Cutland reviewed the 1998 Financial Statements as attached to these minutes. No scholarships were given out of the ICCCPO funds for the German meeting as these were generously raised by the German Parent's Association. She then reviewed how the membership revenues are comprised. More details on the financials concerning the membership fees were requested.

Newsletter
Gerlind Bode advised that three editions have been created this year. In the future it will be used more for information about the business of the ICCCPO, minutes and upcoming events.

Secretariat
Eleanor Pask reported that it was both an honor and challenge to house the secretariat. Invitation to members to make suggestions concerning the smooth running of the secretariat, housing, visa, travel arrangements, etc. during meetings. Communication is sometimes difficult. Membership fees are due in January and reminders will be sent out then.

ICCCPO By-Laws
The following changes to the bylaws were suggested and accepted by a majority vote of the members:
Fourth: C) 3) - all in favor
Fourth: II: Member Nation - all in favor
Portion removed from this section - all in favor
V: Loss of Membership - all in favor
Sixth: General Assembly 
1: Composition - all in favor
1: General Posers and Duties E) - all in favor
Portion removed from this section - all in favor
Seventh: Executive Committee 1: C) - all in favor
Seventh: Executive Committee 1: F) - all in favor

Budget for 2000
Simon Lala and Sadie Cutland reviewed the proposed budget for 2000.
Accepted by a majority vote of the members to accept the proposed budget for the year 2000.

1999 breakdown of dues paid by the 31 member countries:
17 paid full dues
5 paid partial dues
9 have not paid any dues
(Several other organizations have not paid dues because they are the second member in one country)

Committees:
The members were asked to assist with the following committees:
Fundraising
Recruitment/Ambassadorship
Elections
Newsletter
SIOP 2000

Plans for AGA 2000
The AGA was advised of the plans for the following EC and AGA meetings to take place in the next three years:
EC - 2/00 Spain
AGA 10/00 Amsterdam - approved by AGA to meet in Amsterdam
EC 2/01 to be decided
AGA 10/01 Australia (SIOP) Ireland (ICCCPO)
EC 2/02 to be decided
AGA 10/02 Portugal

Recommendations and action on membership applications
Recommended by Executive committee to be full members:
Egypt, Alexandria - approved by AGA
Russia, St. Petersburg - approved by AGA
Russia, Nadeshda-Novosibirsc - approved by AGA
Israel, Hayim - approved by AGA
Lithuania, Paguoda - approved by AGA
Bulgaria, Tashko - approved by AGA
UK, NACCPO - approved by AGA
Brazil, NACC - approved by AGA
Bangladesh, ASHIC - approved by AGA

Recommended by EC to be Associate Members:
Luxembourg - approved by AGA
India, Sahayta - approved by AGA
This brings the total number of countries within the Confederation to 38 with 45 members.

ICCCPO Officer Elections
The AGA elected the following officers to the EC for two year terms.
Marianne Naafs - President
Mark Chesler - Vice President
Sadie Cutland - Member at Large
Christine Wandzura - Member at Large
David Orren - 1st Deputy
Mokhtar Al Harras 2nd Deputy


Other/New Business
Web Page: Ofer Even of the Israeli Parent's Association described the page that is being created by volunteers from his organization. All members' pages can be linked to the ICCCPO page, a planned children's page, and a parents forum.

Republication of a book: Attempts are being made to republish "Childhood Cancer in the Family" (by Chesler & Barbarin), in a format more readable by parents. A form was passed out to assess whether there is a market for a new English-language version of this book.

Evaluations
Participants were encouraged to fill-in and return their evaluations at the end of these meetings.

The meeting was adjourned at 13:10 hours to be reconvened in Amsterdam in October of 2000.
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Letters to the Board:

A letter from Yugoslavia:
Dear Parents,

We are asking you for your help. In spite of our situation, we believe that somewhere humanity still exists and believe that all people in the world are the same regardless of political, religious, national and race belongings.

In the war, those who are innocent - and those are the children - suffer most and bear the heaviest burden. Our children - along with the sounds of sirens, air planes and bombs - fight against a more terrible war and that is the war against cancer!

They have no weapon in their fight except courage and, unfortunately, it is insufficient to win the victory. Due to the shortage of drugs, food, electricity and water, our children are condemned to death and they have nothing done to hurt anybody.

We, the parents of the children with cancer, cannot change the world, stop the wars and troubles of innocents, but we can help each other. On these principals ICCCPO is based. We deeply believe that the parents all over the world will do everything that our children recover and live as all other children on this planet.
Thank you very much for your attention.
Sincerely, 
Irina Ban (secretary of Association "Zvonica")
(Sept. 1999)


A letter from the president of the Dutch parent group to the ICCCPO board:
Dear friends, 

Already a long time ago we met in Amsterdam during your board meeting. I was very pleased to hear that our country will host the ICCCPO/SIOP meetings in 2000. Of course, our association is looking forward to meet all of you again and other parents to share ideas and experiences.

To be a good host we started brainstorming about our role. In the Netherlands we have a good tradition to be internationally oriented and specifically very much concerned about people in less developed countries. This is why the Dutch association, the VOKK, would like to pay special attention to parents from less developed countries with regard to the seminar in October 2000.

In the past our 'sister'- associations made it possible to invite a number of people to attend the yearly ICCCPO/SIOP seminars bearing the costs for the people who could not effort themselves to come. For the year 2000 we would like to challenge all of the ICCCPO associations to accept a nice target. We would like to call for a special action to jointly invite at least 25 to 30 people from less developed countries and paying their costs. VOKK now commits itself to at least invite 5 people on its costs. We will try to raise more funds to increase this number if possible. 

Soon, we will send a letter to the other ICCCPO associations to support our initiative and to commit themselves for a challenging number of invitees.
We would like to ask you to strongly support this initiative and hope to hear from you soon, thanks for your cooperation in advance,

Best regards,
Marc Zwaaneveld
Chairman Dutch association.   Amsterdam, 21-10-1999

Egypt
Dear Chairman of the ICCCPO,
I was very glad and indeed honored to learn that the AGCCC has been accepted by the executive committee as a full member 1999 of the ICCCPO.
I would like to inform you that we are enthusiastically working in Alexandria for the benefit of our group. Thus, I am happy to inform you that we have founded a home for cancer children and their parents to live in during receiving their chemotherapy as a treatment in the hospitals. This home is now under preparation and renovation. It was sponsored by the Red Crescent and Mrs.Al-Fayed and its renovation will be undertaken by the Rotary Group. Quite soon hopefully it will be opened to house children ...
Looking forward to seeing you at one of the upcoming ICCCPO conferences.
Sincerely yours,
Dr.Yasser Saad El-Dil
Chair person of Alexandria Group Of Childhood Cancer Care (AGCCC).
300, Port Said St.- Sidi Gaber.  Alexandria, Egypt
E-mail: ysaad_eldin@yahoo.com

Subject: Membership
Dear Ms. Naafs-Wilstra,

We are very pleased to receive the letter from ICCCPO informing us about the decision of the General Assembly to accept the Lithuanian Society of Children with oncohematological diseases PAGUODA as a Full Member of ICCCPO. We appreciate the recommendation of the Executive Committee and are very happy.

We have send a message of thanks to the ICCCPO Secretariat and are glad to correspond with You, Ms. Naafs-Wilstra. As you mentioned in your letter it is very important that this activity joins many nations and much various experience. We are looking forward to receive the ICCCPO Newsletter and information regarding dues for the year 2000. We hope to meet you in the Netherlands in October.

We would like to wish you health, success and happiness in the year ahead.
Sincerely Yours
Marijana Chmeliauskiene
Society PAGUODA
Gelvonu 58-40
LT-2010 Vilnius, Lithuania

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Announcements

SLAOP Meeting (Latin American SIOP)
3-6 April, 2000, in Havana, Cuba
A parent meeting will be organized for the Latin American Groups of Parents of Children with Cancer
Information:  Rogelio Araújo Gil, fenic@bitel.es
=======
Meeting the Challenges of Pediatric Oncology in Asia
1st SIOP-Asia Congress.  26-28 April 2000  Singapore
Information:  Simon Lala: simon.lala@xtra.co.nz
=======
Challenges in Pediatric Oncology for Africa in the New Millennium
5th Continental Meeting SIOP in Africa
12-17 May 2000..  Sun City, Pilanesberg, South Africa
A Parent Meeting will be organized by ICCCPO and CHOC 
Information:  Sadie Cutland: cutland@icon.co.za
=======
ICCCPO Conference and ICCCPO General Assembly Meeting *
and 32nd Meeting of SIOP: Embryonal malignancies, theme and variations
Oct. 4-7, 2000  Amsterdam, Netherlands
Information: Marianne Naafs-Wilstra, mcnaafs.vokk@wxs.nl
* a limited number of scholarships will be available, please contact the secretariat for more information. 
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"Understanding Childhood Cancer"

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