Notes by the editors and the board

As we came home from a very good meeting in Luxembourg on a new high with a sense of how well we are doing as an organization, we all were called back to a totally different reality: the terror attacks in New York and Washington shocked us all profoundly and leave us with the question: what effect will it have on the world and all our actions? 

At this point we all hope that the sense of solidarity expressed all over the world right after the terrible attacks is the same genuine feeling of solidarity which supports all our actions within ICCCPO - across cultural and religious boundaries. 

The conference in Luxembourg was such an example of solidarity and it was the first international parent meeting that also involved a survivors meeting. Young people, former patients, from many different countries came together for very intense sessions of their own, topped by the arrival of 25 cyclists from Germany. The cyclists are a group of survivors who unite once a year to go on a bicycle tour which takes them through different parts of the country, stopping at all the hospitals along the way which treat children with cancer. It is their way of encouraging those presently in treatment with their appearance - the positive reinforcement they all wish they would have received themselves. 
The survivors plan to keep on meeting at a regular basis (in connection with the ICCCPO meetings) and have started to establish their own network. They elected an informal board which will do the planning and coordinating:

They can all be contacted through their respective national parent initiatives and will give us their specific email addresses soon. Pictures of the meeting can be found on from the Swiss website: www.SwissCCS.org (Swiss Childhood Survivors). 

The election for the ICCCPO board brought only a very minor change: Julian Cutland (already responsible for the website) was elected as board member at large as Sadie stepped down still remaining to be actively involved in ICCCPO business. The position of Rogelio Araujo remained open as no nomination was received prior to the meeting. We would like to encourage all those who wish to be involved in ICCCPO's business or who know of suitable candidates to think about the nomination in due time. 

Plans for the meeting in Porto have already started. We hope to see many of you there as well as new faces from all over the world.

Gerlind Bode, Pia Bonini, Marianne Naafs-Wilstra

New address for the ICCCPO Secretariat

For several years Candlelighters Canada (CCCFC) has hosted the ICCCPO secretariat and they did this at no costs. Candlelighters' support and efficient work has been a great support for ICCCPO during a period of relatively rapid growth. We especially thank Janet Evans for the kind and effective co-operation. 
At this moment Candlelighters Canada is in the midst of a huge reorganisation and no longer able to host the secretariat at no cost.
The financial position of ICCCPO is not stable enough to have a paid secretariat. Therefore the General Assembly has decided to divide the various tasks among several members. All "tasks" will be portable - ICCCPO is a "virtual organisation". By taking the loads from the shoulders of one organisation, we hope to guarantee continuation and to diminish the risks.
The physical address of the ICCCPO Secretariat has moved to the Netherlands: 

The financial administration is with Simon Lala, New Zealand.
The newsletter will be in the hands of the German Leukemia Foundation
The website will be managed by Julian Cutland, South Africa.
The resource centre will be hosted by Kids Cancer Care Alberta.

New members

At the AGA the following organisations were adapted as new members: 

Kids Cancer Care Foundation of Alberta, Canada - associate member
L'Envol, France - associate member
Fundacion Natali Dafne Flexer - Buenos Aires, Argentina - associate member.
CLIC (Cancer and Leukemia in Children) - United Kingdom -associate member

International Childhood Cancer Day

At the Luxembourg Conference (Sept. 7-9, 2001), ICCCPO declared the first International Childhood Cancer Day (ICCD). The purpose of the day is to raise awareness of childhood cancer and help ICCCPO member organisations raise funds for their work within their own countries.
The ICCD will take place on 15th January in 2002, although we expect some members will organise events over a period of weeks around 15th January.
ICCCPO encourage all members to take part in some way - the more we all take part, the more our voice will be heard, and our needs understood and addressed. To help you, ICCCPO will be sending out a briefing pack so that you can make the most of the event. The pack will include: 

• Lapel stickers with the ICCD logo to help basic fund-raising

• The ICCD logo so that you can create your own material

• A media briefing pack to give hints on how to raise awareness

• A fund-raising checklist with ideas on fund-raising events 

To find out more and to register for the ICCD pack email: thaxter@lttrust.freeserve.co.uk 

Annual Meeting 2002 in Porto

The Annual General Assembly of the ICCCPO has chosen the site for their next meeting. Together with SIOP, the ICCCPO will meet in Porto, Portugal in September, 2002. Although the exact dates of the conference are still to be confirmed, the meetings will begin either one or two days prior to the beginning of the formal SIOP meetings which are to be held September, 18 - 21, 2002. 

In order to be as responsive as possible to the parents groups and individuals that are planning on attending, the planning committee is looking for your input into the types of workshops, lectures and sessions you would like to see offered. Please contact the planning committee of the 2002 Porto, Portugal Conference through Christine Wandzura, Planning Committee Chair at: wandzura@kidscancer-care.ab.ca We would appreciate your comments and suggestions and hope to see you in Porto!

Sponsoring children with cancer in developing countries

At the conference there was a presentation about how parents and professionals from developed countries can work together to support children with cancer in developing countries.
We heard about how professionals in Italy have helped to establish centralised childhood cancer treatment in Nicaragua. Instead of treatment dissipated in general hospitals, it becomes specialised. This makes support by external professionals easier to provide, and raises survival rates because treatment is dedicated to cancer.
The difficulty then arises that families have to travel further to get to the specialist centre. This is where the parent organisations in developed countries can help. By providing sponsoring, families can then bring their children to the specialist centre.
ICCCPO have set as goal to work with SIOP to develop programs like this in other countries. Discussions are already underway with SIOP in Europe where we have to establish a program between two European countries in the coming year.

ICCCPO Business Plan 2002
ICCCPO recognizes that its members have collective but differing needs. All members are seeking information, emotional and social support. But the priorities of members differ depending on the outcome of the disease. In developing countries, we need to see improved diagnosis and better access to existing treatments. In developing countries where most children now survive cancer, we need improvement in survivor support and programs to help reintegration into society.
The business plan for 2002 has set goals that will put effort into supporting this wide range of needs, and to help ensure that the activities of ICCPO are inclusive. The main goals for 2002 are: 

• The International Childhood Cancer Day - 15th January 2002

• Early Warning Guidelines - improving awareness of cancer signs 

• Sponsoring children with cancer - a twinning program in Europe

• Supporting the development of an International Survivors network

• Setting up a Developing Countries committee (parent version of PODC)

• Working with SIOP on Guidelines for Care, psychosocial committees, and developing -countries committee (PODC)

• Increasing membership.
  

Developing a group of SURVIVOR ADVOCATES

ICCCPO is planning to submit a proposal to the European Committee.
Many survivors of childhood cancer represent a unique resource, a cadre of potential "experts" on the ways in which young people can cope with cancer, on how parents can best respond, on what schools and community agencies can do to help these young people, on how medical staffs can better serve this population, and on the need for healthy lifestyles among survivors. When appropriately trained, these young people can participate actively in educational campaigns designed to help ease the psychological pain of children and families in treatment. They also can reduce "at risk" behaviors of young people surviving cancer (e.g., smoking, sun overexposure, dietary excess, sexual risk-taking) and promote their healthy lifestyles, thus potentially helping to prevent second cancers in this population. And they can help educate the general public about the "psychosocial normality" of most children with cancer, the special needs some of them have, and how everyone might best respond to them.
Thus, ICCCPO and its participating national organizations plan a threefold pilot program to create and utilize a group of sophisticated CANCER ADVOCATES. We will:
1. Gather information of the service needs of childhood cancer survivors and on the existence in different EU nations of programs designed and operating to meet these needs.
2. Train a group of survivors of childhood cancer in the age range of 18-25 to be peer-counselors and health advocates to young people in treatment for cancer and for other survivors of childhood cancer. 
3. Further prepare this group of survivors to work with schools, medical clinics, community agencies and cancer charities to be public spokespersons and advocates for the best possible care for children with cancer. 
European groups, interested in this programme can contact Pia Bonini pia.bonini@tiscalinet.it or Gerlind Bode dlfhbonn@t-online.de

Letter to the Chairperson

Dear Ms. Marianne Naafs-Wilstra
We apologize for our late answer. For a long while we still had hope that we would be able to take part in the meeting of parents' organizations in Luxemburg, but unfortunately we were not able to raise any money for our representatives to go there. But we think the money we have now is more needed for the treatment of the children, which, praise God, goes quite successfully now. 

In Kiev, the capital of the Ukraine, they've started performing operations of bone-marrow transplantation, and we are getting ready to send some children there for the operation. 

Fortunately, we are not completely isolated: this spring we had a chance to take part in a Russian-French seminar in Moscow on helping children with difficult forms of diseases. Now we know personally and keep in touch with parents' and voluntary organizations from Moscow and St.-Petersburg and some other cities who help children. 

A few days ago we have received from you by regular mail one more bulletin by ICCCPO. Thank you so much! We hope to keep updated by you on other meetings, and on your current news.

With deep respect,
Eugene & Marina Novitsky,
coordinators of "Parents' Initiative"
hemato@simfi.net

"Hope" Holiday in Chelyabinsk

The public association "the Hematologists of the World to Children", joining together doctors and parents of children, suffering from oncology diseases, is going to conduct a holiday for those children, who have won in fatal gripper with illness. 

We invite you to take part in a celebration, which is to be held on November 16, 2001 at 12.00 a.m. in the Center of business cooperation.
We hope, that you will share with us our common joy.

Chelyabinsk area, unfortunately, is not most favorable for life of the person because of a heavy ecological situation. The payment for a civilization are the human lives, including our babies. 

The awful illness tried to steal the most precious belongings of the parents: their children. But, joining our attempts, children, their parents, doctors, the medical sisters, have stood. 
Now more than 500 children celebrate their second birth.

We want to give hope to those people who still struggle and require support. Due to successes of modern medicine, it became possible for the majority of sick children.

Rita Galipova,
454076,. Chelyabinsk, Medgorodok,- ODKB, Cancer and Hematological centre. 
Ph. (3512) 34-03-01, 65-80-19.    Fax (3512) 60-89-90
E-mail: mopob@chel.surnet.ru

Note: Rita Galipova was announced women of the year for her district in 2001.