A note from the editors

Through My Eyes ... was the title of a very successful project of this year's International Childhood Cancer Day (ICCD). The patients in hospital were asked to take photos of their environment, such as their hospital rooms, their beds, their toys, their favourite nurse, etc. and to send those pictures to the organizing committee of the Vancouver SIOP conference. The pictures will be presented at the SIOP/ICCCPO conference in Vancouver, Canada (September 19-24, 2005, see also program on page 11). Many, many children participated. In Germany alone, about two hundred from more than thirty clinics were involved. As far as we can tell already, the photos are wonderful and demonstrate what these children consider important. The German parent initiative will be celebrating its 25th anniversary this fall and plans to present a great number of those photos taken in German hospitals (some are shown here).

Reactions such as the following show the importance of the International Day in the specific countries:

I am glad to tell you that this year our ICCD will take place at Los Pinos, the official residence of our President. This year, our First Lady agreed to have our reunion of more than 500 people at their residence. We are going to have 3 youngsters who have survived their disease and live happy lives to talk to the media. We are going to have full coverage about AMANC and ICCCPO. I am very happy to tell you that after 22 years of struggle, finally this government is accepting childhood cancer as a public health problem and is working out a plan to have full coverage of all leukemias to start with... Bless you, Lupita (AMANC, Mexico).

Surviving and thriving was the theme of the ICCD 2005. Even when properly treated, childhood cancer can often have serious side effects and long-term consequences. Children have the right to qualified rehabilitation after treatment - the right to thrive. This is a very important issue for parent initiatives, since many times the former patients face numerous problems as young adults, e.g. in school, in finding jobs or getting accepted for health and life insurances.

These are some of the issues addressed at the survivors meetings which have become part of the ICCCPO annual meetings. This year again, survivors from all over will join to attend their own program in Vancouver as well as participate in lectures and workshops presented by ICCCPO. This has added another dimension to the ICCCPO meetings and is gratefully appreciated.

Better care for children in Europe

In October 2004, ICCCPO joined the board of SIOP Europe in a lunch debate with members of the European Parliament in Strasbourg, France. "Europe should take all possible measures to enhance the existing collaboration between paediatric oncologists both in the treatment and research of childhood cancers. There is a great concern that current and proposed EU legislations threaten this collaboration, and as a consequence, children," this was the warning given by SIOP Europe and ICCCPO. At the debate we discussed the organisation of care, the need for collaborative international clinical trials, the draft Regulation on Medicinal Products for Paediatric Use, and what Europe can do to address these issues.

Gerlind Bode

Marianne Naafs-Wilstra

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The International Childhood Cancer Day 2005:  A Report from Singapore

CCF applied for membership to be part of the ICCCPO in 2004. Hence, 2005 was the first time that we celebrated the International Childhood Cancer Day in Singapore.

We took the opportunity to highlight the situation of childhood cancer in Singapore and the work that we are committed to - enhancing the lives of children with cancer and their families. Thus, our main objective of ICCD 2005 was:

To raise awareness of childhood cancer in Singapore by introducing the gold ribbon which is the official ribbon for childhood cancer around the world.

Our secondary objectives are:

-  To create a memorable event for our stakeholders.

-  To share more information on childhood cancer and how this illness has affected the lives of our clients.

-  The healthcare situation in Singapore for children with cancer.

As this was the first time that ICCD was marked in Singapore, we wanted to involve as many Singaporeans as possible to participate in our gold ribbon campaign which ran from end Dec 2004 to end Feb 2005.The public was encouraged to show their solidarity by wearing the gold ribbon pin on 15 February 2005, the actual day of ICCD and submitting their pledge online on our specially-created ICCD web-site. Our target was to reach out to 100,000 Singaporeans who will pledge their support for our children.

Target audience

-  CCF children and families

- Regular CCF donors

-  Childhood CARE schools

-  Employers of parents of CCF children

-  Staff from the pediatric oncology wards  in KKH and NUH

- CCF regular volunteers

-  Employees of corporate sponsors

-  General Public (Adults)

About the gold ribbon pins

The gold ribbon is the official ribbon of children with cancer worldwide, supported, recognised and promoted by hundreds of organisations and treatment centres related to childhood cancer. It was inspired by the life of Kelsey Nicole Thorsen, 1989~1996.You can read about her story at http://www.goldribbons.com/kelsey.html  

Internationally, the gold ribbon represents children with cancer in these and other ways:

-  It is a precious metal, as our children are precious;

-  It is the purity of our children's hearts;

-  It is the flame of hope.

To us, the gold ribbon also represents the strength of our children and their families who have fought a brave battle with childhood cancer. This source of strength is "cast" from the support of many people who have contributed in their various capacities: the medical team, our social workers, sponsors and donors, volunteers and schools.

Pin distribution

Staff at the CCF main office was split into two teams to distribute the pins at two venues: Orchard Road (with The Body Shop staff) and Shenton Way (outside Raffles Place MRT station with two other ad-hoc volunteers). Staff at National University Hospital also helped to distribute the pins at the hospital lobby, while the pins were left the clinics at KKH Women's and Children's Hospital for visitors to pick up.

We planned to distribute the pins to the public through various channels, mainly:

-  online orders (for more than 100 pins)

-  placement of pins at different distribution points at the shops

-  bulk orders from corporate employees

-  public call enquiries (from our various communications channels)     

Many companies supported us as well as schools (in total: 43 companies, 13 schools, 3 healthcare organisations, 3 community organisations). Our CCF volunteers also helped to coordinate some of the distribution to the restaurants and shops.

Public awareness

A lot of media coverage supported us. We created our own ICCD website with information for the public on what the event is about, what they can do to help, where to get the pins and stories of our children (with a message board). It proved to be an effective form of communication to the public. Three email alerts were sent out as well to inform our contacts about the event (end Jan, 7 Feb and 14 Feb). So far, it is the most effective "call-to-action" channel.

About 120 posters were produced and given out to all shops and companies, 14,000 Bookmarks were produced and placed in taxis and other distribution points. We also sent letters to past donors and CCF parents, with an enclosed employer survey form to gather feedback from CCF parents on current employment situation for them.

Ward activities for children staying at KK Women's and Children's Hospital

A group of undergraduate students volunteered to organise and execute a ward activity for the children with cancer at the hospital. They played bingo in the morning and the healthcare professionals who worked with the children, joined them for a lunch reception thereafter. We also organised a CCF lunch-time workshop on "Long term side effects of cancer treatment: what you need to know" for parents.

Conclusion

Despite the intensive tsunami appeal in late December 2004 to mid January 2005, Singaporeans continued to show their support for local causes and orders for the gold ribbon pins poured a few weeks before ICCD. It was heartening to see the support from different individuals, volunteers and companies, in helping to raise the awareness of childhood cancer through the pin distribution.

All in all, we met our objectives for the event and distributed 100,000 pins to the public. However, more can be done in the area of raising childhood cancer education in Singapore. Hence, we aim to include more awareness fringe activities and implement a more effective communications strategy for ICCD 2006.

Evangeline Goh

Public Education Officer.  Children's Cancer Foundation, Singapore

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ICCD in Bangladesh

We are very pleased to inform you that Children Leukaemia Assistance & Support Services (CLASS) observed the International Childhood Cancer Day '05 with due solemnity. In observance of the day in a befitting manner, CLASS drew up a two day long program on the 15th and 16th February. On the first day, medicine and gifts were distributed to the cancer stricken children under treatment at Chittagong Medical College Hospital. A counseling and discussion program with related physicians and parents and amusement programs for the children was also organized on that day.

On the second day, a colorful rally was brought out from Circuit House Premise. Over 500 students of various schools of the city, Rotarians, Rotaractors, Boy Scouts and Girls Guides participated. The rally paraded through the main through-streets of the city. Leaflets, banners, festoons having awareness slogans were distributed among the public. This unparalleled and colorful rally could caught the attraction of city dwellers which was led by the honorable vice chancellor of Chittagong University, Professor A. J. M. Nuruddin Chowdhury and the principal of Chittagong Medical College Professor Dr. Chowdhury B. Mahmud.

In observance of the day, CLASS published colorful posters and leaflets in corporate public awareness issues which were distributed among the students and guardians. CLASS also organized publications of articles focusing on the topic of childhood cancer in local newspapers to raise the public awareness.

Osman Gani Mansur

CLASS, Chittagong

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News from SIOP

The focus of our attention in the SIOP Scientific Committee and the Board right now is on review of the abstracts submitted (deadline March 1st 2005) for the 37th Congress of SIOP to be held in Vancouver between September 21st and 24th 2005.  One of the exciting features for myself as President and of course the Board of SIOP in general is the way in which increasingly we are working closely with parents and survivors to develop complementary programmes at our annual meeting.  This year has been an even more close joint effort because of the Through My Eyes photographic competition and a number of the symposia at the meeting, which are really held jointly between SIOP, The International Nursing Group affiliated to SIOP and ICCCPO. 

Of particular interest to all of the groups is the development of outreach to the estimated 80% of children worldwide that don't receive adequate care for their tumours or any treatment at all.  As a joint effort we have been developing twinning programmes focussing very much on how parents organisations can influence local populations and politicians much more effectively than ever we can.  Hence the huge strength of our collaborative activity. 

SIOP has signed up to in the production of a mission statement trying to persuade WHO and all other relevant regulatory authorities to put cancer drugs, particularly for children, on the essential drugs list with a consequent reduction in costs, regularisation of supply throughout the world. Our desire is that therapy should be used in locally produced relevant protocols in specialised units to reduce the risks of inappropriate therapy and the waste of precious agents. 

There is a huge amount left to do with reference to both population and professional training and education.  For 2005 the Board have commissioned a sub committee of the Scientific Committee chaired by Bharat Agarwal to look at the whole issue of an education and training programme starting with our annual meeting but moving on from there to address the whole aspects of our contribution to training worldwide.

To achieve everything we want to do will cost more money than we currently have available or indeed are able to raise as any form of profit from our annual meetings.  So I have started a process of looking firstly at what the vision for SIOP is as seen by its committees and membership in general.  When we are all agreed on what we want to achieve in the long term we will produce a mission statement and then start to raise the appropriate funds in a variety of ways in many different countries to try to deliver on our aims and objectives.  So we are living in exciting and difficult times but if we don't face up to these challenges we will not move forward and meet the needs of children worldwide.  ICCCPO and the continental SIOP branches must begin to work more closely together to deliver a coherent activity worldwide. 

I personally look forward to meeting as many members of ICCCPO who are able to come to Vancouver.  In the meantime can I pass on to all of you through the newsletter all the very best of wishes for a successful 2005 and to thank you on behalf of the SIOP Board for all that you are doing to advance the cause of the best care for children worldwide.

Professor OB Eden,

Chair SIOP

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ICCCPO affects ASHIC activities

ASHIC Foundation has been operating since 1994 - started by the bereaved parents of Ashiq Choudhury, who passed away when he was only three.  Its main goal has been to serve children living with cancer in Bangladesh, in any way possible.  Social awareness, private and public sources of funding for childhood cancer are limited in Bangladesh and as such ASHIC activities have been growing steadily but slowly.

Mrs. Salma Choudhury, Chairperson of ASHIC Foundation started attending ICCCPO conferences in 1999 and ASHIC became a full member of ICCCPO in the same year.  Through her experiences and the contacts Mrs. Choudhury has made over the years, the range and quality of the ASHIC programs have improved.  Also, through increased joint promotional opportunities on ICCD and at the SIOP conference held in Bangladesh in 2004, awareness about ASHIC activities is now higher both locally and internationally.  This makes implementation of new projects easier.

Another exciting door that has opened for ASHIC through ICCCPO is the potential of a twinning program to eventually offer palliative care to cancer-affected children in Bangladesh.  ASHIC has been working with Geoff Thaxter of the Lisa Thaxter Trust in UK, another ICCCPO member, to jump-start this program, and both parties have made forward progress.  This will be a wonderful development for the children living with cancer in Bangladesh because currently there is no form of medical comfort that is available to the terminally ill.

Since its association with ICCCPO, ASHIC has gained momentum in its work, developed an incredible network of people who are willing to help the children in Bangladesh, and formed some lifelong friendships that transcend cultural and geographical differences.

Salma Choudhury

Chairperson, ASHIC

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4th International Week for Children with Leukemia

Children with leukemia from different nations have been gathering in Turkey for the last three years at the International Week for Children with Leukemia (IWCL) pioneered by LOSEV, an organization that works worldwide.

We, as LOSEV-Children with Leukemia Health and Education Foundation, wished to bring together children with leukemia from different nations, in order to emphasize the reasons for leukemia, to increase the success rate of treatment and attract people's attention all around the world to leukemia disease. Children who share the same faith and face the same obstacles, embraced each other to show that "They are not alone".

Previous International Weeks for Children with Leukemia had given us the opportunity to bring children with leukemia from 25 different nations to our country. Children shared their stories, cultures, experiences and the problems they face in their own countries, and worked together to create solutions to these problems, while having a great time and visiting popular tourist, historical and entertaining places in Turkey.

This year the event will take place between 29th May - 3th June 2005. It will start in Ankara and finish in Antalya. Accommodation, nutrition, transportation and all other expenses for the programme will be refunded by LOSEV. During the week, our guest children will be accompanied by a hematologist and a nurse with a fully equipped ambulance. Required health checks and treatment will be provided by LOSANTE - our Hospital for Children with Leukemia. 

Aims of IV. (International) Week for Children with Leukemia

Throughout the IV. (International) Week for Children with Leukemia we aim to:

-  Increase the world's public awareness on the rapidly growing childhood leukemia cancer incidences

-  Provide a platform to enhance the solidarity amongst all children with leukemia and to establish a fusion between cultures

-  Put common problems that leukemic children and their families face on the world agenda

-  Bring about permanent solutions to the problems our children with leukemia and their families experience

-  Stress that leukemia is a curable but an exhausting disease

-  Emphasize that drug therapy is not sufficient to overcome this disease; nourishment, hygiene and especially psychological support are as important as the drugs for succeeding

-  State that more emphasis should be given to educational studies to avoid leukemia, our children should be spared environmental risk factors and doctors and other medical staff should always be supported to achieve these goals

-  To lay the groundwork for the recognition of  IWCL by countries all around the world and for making it available for the event to be hosted every year in another country

With the increasing participation of children from all around the world we are getting closer to our foremost important goal which is:

-  TO INCREASE THE TREATMENT SUCCESS TO 100% AND TO GIVE OUR CHILDREN A HEALTHY AND PROSPEROUS FUTURE.

One of the most important aims of the week is to develop the cooperation between such organizations and make it available for us to create common solutions and policies which also fall within the objectives of the ICCCPO "to improve access to the best possible treatment and care for children with cancer everywhere in the world". We have a dream, a world without leukemia. This dream can only be realized through the co-operation of people and institutions from all around the world.

The documents and required forms are sent through the Turkish Diplomatic Missions to organizations for children with leukemia almost all over the world. Information about organizations, requirements and application forms can be also obtained from our web site (www.losev.org.tr). All institutions may also contact us directly (international@losev.org.tr)

Pediatric Hematologist Dr. Ustun EZER

Chairman of the Executive Board

LOSEV - Ankara Children with Leukemia Health and Education Foundation

Resit Galip Cad. Ilkadim Sk. No: 14 GOP. Ankara/TURKEY

Tel: +90 312 447 06 60.  Fax:+90 312 447 68 33.  Email: international@losev.org.tr.  Web: www.losev.org.tr

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Letter from Ukraine

Dear Editorial Staff:

I would like to say a few words about the role of my participation in ICCCPO-conferences.

Since I am engaged in the activities dedicated to the problems of cancer children and their families, I listened to all lectures of ICCCPO-conferences with great interest. I had the honour and pleasure to attend three conferences. I pay extra attention to and have a special interest in the work and experiences of my colleagues who work for children with cancer all over the world. It's a good chance for me to meet and talk to them, not only obtaining important information about their work, but also having the chance to hear various opinions and different attitudes regarding very specific projects for children with cancer and their families. All this encourages me and my colleagues in the Ukraine and gives us new strength in our work.

It's a great honour for our Charitable Fund "Viden" to be an associate member of ICCCPO - the best confederation in the world which dedicates its activities to the struggle against paediatric cancer. We spread the knowledge and experience of ICCCPO and support all its initiatives in the Ukraine!

I want to express my special gratitude to all my ICCCPO colleagues and to our reliable partner, the  Austrian Kinder-Krebs-Hilfe which makes my participation in the conferences possible and shows great understanding and support of Ukrainian patients and their families.

Yours faithfully,

Svetlana Shut

Ukraine, Sumy region

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Urgent request from the Secretariat

We kindly ask our members to inform us of any change of address, e-mail, website, telephone and fax. It is hard to keep in touch when our contact list is not updated, and staying in touch is what ICCCPO is all about.

Could you also inform us of new parent organisations in your region? They may be interested in joining ICCCPO and we could send them the necessary information and documents.

Thank you for your help!

Marianne Naafs-Wilstra

icccpo@vokk.nl

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