Some words from the editors …

Those who attended the annual congress in Vancouver will agree with us: it was an excellent meeting, with a record of attendants and a record of countries present. Thanks to the donations from members to the Parents helping Parents Fund and sponsoring of the conference by Clic Sargent and the Lance Armstrong Foundation we were able to provide scholarships to many representatives from parent organisations and survivors’ groups. This Newsletter offers a variety of articles about and from the conference and we hope to publish some more in our next number. Survivors have a special place in this newsletter as they had at the conference. Unfortunately we cannot share with you the beautiful play that Dan Mornar and his survivors’ group had prepared for the Meet & Greet.

Elections for the Executive Committee were held and Anita Kienesberger from the Austrian parent organisation and Benson Pau from the Hong Kong parent group were elected to the board.

Mark Chesler and I (Marianne Naafs) will not disappear; we have committed ourselves to several tasks, like so many of our predecessors have done. After all, the work has to be done by all of us together.

ICCCPO is still growing in numbers and now has 81 members from 58 countries. Membership is not our main goal, our confederation is all about sharing and working for better chances and a future for children with cancer worldwide. Therefore ICCCPO is collaborating more and morewith the doctors through SIOP (international and continental) and with organizations such as UICC, WHO etc. We cannot change the world in a day, but one can move a mountain by moving it shovel by shovel.

We hope that all our members will participate in the next ICCD on February 15, 2006, and will contribute to the continuation of the Through My Eyes Project, which was a great launch at the Vancouver conference.

And of course we wish you a successful year!

Marianne Naafs & Gerlind Bode

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ICCCPO launches three new programs at the Vancouver Meeting

The ICCCPO introduced three new exciting projects during this year’s SIOP/ICCCPO conference. The first program was the Developing Countries Working Dinner. This evening was a three-hour working dinner that explored important issues and needs of groups from countries that do not benefit from state-of-the-art treatment and care. The outcomes from this evening have now been circulated to the participants and our hope is that it will have a lasting impact on the programs provided by the participants from over 20 developing countries.

Also featured for the first time was the Pre Education Day Workshops. Topics included fundraising, volunteer management, program evaluation and marketing and were delivered in an interactive, insightful and informative workshop format.  It is this kind of information that children’s cancer agencies from around the world come to learn from at these forums. 

Delegates from parents' groups then took part in four full days of conferencing and networking including a social program, which included the very popular Meet & Greet which featured food and beverages supplied by the participants and the ICCCPO annual dinner.

Perhaps the highlight of the conference for all the participants was the launch of a three-year project entitled: "Through My Eyes" A Day in the Life of Children with Cancer Around the World.  This first ever international photo exhibition, sponsored by Roche, was organized and managed by the Kids Cancer Care Foundation of Alberta and featured photos taken by children in 91 cancer clinics from 33 countries.  Conference attendees were provided a glimpse of what childhood cancer looks like in other countries through this impressive exhibition. 

Next year, the theme will be childhood cancer in the classroom and more details of the project will be sent out to all SIOP members early in the New Year. This exhibition is an important way of giving children with cancer a voice to tell their stories! For more information you may contact: throughmyeyes@kidscancercare.ab.ca

Chris Wandzura, ICCCPO-Board (Secretary)

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ICCD – 2005

The International Childhood Cancer Day on 15th February was observed by a growing number of ICCCPO members. This year the main theme was the programme “Through My Eyes” which encouraged children to take photographs of what childhood cancer meant to them on that particular day.

As well as “Through My Eyes” members celebrated the day with a range of events. In Mexico, the ICCD took place at Los Pinos, the official residence for the Presidents. This year, the First Lady provided a reunion of more than 500 people at their residence. Three young survivors talked to the media.

In India, Sahayta organised a painting competition and distributed gifts to children and survivors. Also in India, one of the CanKids events was a day at an amusement park where children were able to release prayer boxes attached to helium balloons.

In the UK a poster campaign was used in hospitals to encourage children to take part in “Through My Eyes”. An international edition of Contact magazine was produced and distributed to celebrate ICCD.

In New Zealand there was media and radio coverage with an on-line auction of donated items.

In The Netherlands there was a survivors conference, a drawing competition and “Send a Card” where children were invited to send a card to other children in Eastern Europe.

In Iran, MAHAK supports over 5,000 children through its outreach programs and produced yet another wonderful poster.

In Singapore, gold ribbons were distributed to raise funds and awareness. In Russia, CAPAC took 140 out patient children to a restaurant and held three parties in the hospitals. In the Ukraine, the member Viden organised media coverage and a tea party for children in hospital.

In Serbia, there was good media coverage and posters produced. In South Africa, there was a sponsored golf day to raise funds, a party for 250 children, and visits to 19 schools to raise awareness.

In Bangladesh, CLASS organised the distribution of medicines and gifts, and a rally supported by 500 school children.

This year, the event was supported by José Carreras who has his own international Leukaemia Foundation.

Geoff Thaxter

For more information and plans for ICCD-events in 2006 contact: info@lisathaxter.org

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From difficulties to solutions for the rare-disease community

From June 21 through 22, 2005 the Government of Luxembourg supported with the participation of the European Commission a conference of EURORDIS on the topic of rare diseases. EURODIS is the European Organization for Rare Diseases. It is a patient-driven alliance of patient organizations an individuals active in the field of rear diseases.

The conference covered a wide variety of problems connected to those diseases which are relatively unknown as they occur only very seldom. Though cancers in childhood is also rare – when compared to the incidence in adulthood – it occurs much more frequently than a whole number of genetic disorders. Thus, a great number of problems unique to the group of rare diseases are in many countries of the European Union already solved in the field of pediatric oncology, such as registries and cooperative treatment protocols.

However, there is the still the problem of the orphan drugs. Many medicines applied in treating malignant disease in children are not approved for the use in children, though used successfully over many years. And this is a common goal to fight together with all the other self help groups, who gathered in this meeting with the aim of better care for people living with rare diseases.

G.B.

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Share Your Story of Survivorship with the Lance Armstrong Foundation

The Lance Armstrong Foundation (LAF) believes that in your battle with cancer, knowledge is power and attitude is everything.  In an effort to help cancer survivors, we have created LIVESTRONG(tm) - Resource for Cancer Survivors (http://www.livestrong.org).

LIVESTRONG(tm) is a resource program of the LAF, created to educate cancer survivors and their friends and family about topics of survivorship. LIVESTRONG(tm) offers you an opportunity to learn about topics that may affect your life after treatment ends by providing resources that can help you understand some of the physical, emotional, and practical topics that are part of survivorship.

An important part of LIVESTRONG(tm) are videos of survivors telling their stories and identifying issues they have faced as part of their post-treatment and long-term survivorship experience. Survivors from all over the United States have already contributed to LIVESTRONG(tm) by sharing their stories of survivorship.  We are excited about filming stories from an international perspective at the ICCCPO Parents and Survivors Conference.  We would love to film your story of survivorship in Vancouver, BC.  We are looking for survivors or their caregivers who can share experiences from various perspectives (ethnicity, socio-economic status, age, etc.).  We ask that survivors provide us with their cancer type, date of diagnosis, age at diagnosis, ethnic background, city and country of residency, and contact information (mailing address, email address, and phone number).

If you feel you may be interested in sharing your story, please call or email me, and I will be happy to answer any questions you may have.  Please respond by 4pm on September 14th, 2005.  Thank you for your commitment to help others learn how to live as a cancer survivor and learn how to live strong.

Nancy Tran

LIVESTRONG(tm) - Resource for Cancer Survivors

Lance Armstrong Foundation

512.236.8820 x183    nancy.tran@laf.org    mailto: tiffany.galligan@laf.org

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Finnish Survivors Visit Austria

SYLVA has trained over 50 young survivors to provide peer support for children and adolescents who are hospitalized because of cancer. The program has become a great success. The hospitals and the patients liked the visits of the young support persons, who are on average 18-25 years of age. Finnish survivors were invited to Austria to tell others more about this activity:

We were 11 young Finnish survivors who flew to the flowering Vienna in the middle of April. We were invited by the  Austrian survivors and, of course, were very excited about the trip. The purpose of our journey was to talk about the Finnish patient support activity we have been carrying on in Finland.

Our hosts had made a fabulous schedule for us in Austria. First we spent one night in Vienna. Then we travelled to Linz for two days to meet with the local survivors. On our trip, so much was happening and we enjoyed everything! Marvellous meals at traditional Austrian restaurants, sightseeing, museums and shopping. But what was most important, we had a great time with our new friends and got to know each other.

It was a great pleasure for us to introduce our patient support activity. We presented the main points by acting out drama, and told the Austrians what it means to be a support person. Everyone got the idea of what we meant, and it was a funny way to learn about it.

We survivors had an excellent trip with good company. We hope to meet our Austrian survivor friends in the same spirit in Finland soon! Heli Vikeväinen

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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.

Some e-mail addresses seem to be incorrect. So, if you don’t get any information from the ICCCPO secretariat over a long period of time, make sure to send a short note with your e-mail address to be compared and – if necessary – corrected.

Could you also write us if you know of new parent organisations in your region? They may be interested to get known to ICCCPO and we could send them the necessary information and documents.

Thank you for your help!

Marianne Naafs-Wilstra

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Rafi Memorial Painting Competition

The Rafi Memorial Open Painting Competition for Children and Adolescents was held at local Safa Arcade Auditorium on 28th July 2005 with a lot of enthusiasm and gaiety. It was sponsored by the Children Leukemia Assistance and Support Services (CLASS). Over three hundred children and adolescents drawn from about twenty primary and secondary schools of the Chittagong region took part in the event. Subject of the competition was “Environment and Family”. Guests attending a pompous prize-giving ceremony arranged on the occasion, asked enthusiasts present to ensure more care for the children. They also stressed preventing children from taking food items mixed with chemicals, colors and preservatives. The speakers also emphasized developing awareness about meeting the menace of childhood cancer and taking preliminary preventive measures. Eminent painter Prof. Sabiul Alam, former Lions’ Governor Nader Khan and CLASS Chairman Osman Gani Mansur graced the occasion as guests. Rotary and Rotaract Club of Islamabad extended all-out cooperation in the arrangement of the event.

It may be mentioned here that a number of children with cancer were invited to view the event, some of them also participated. Local media highlighted the program in detail.

Osman Mansur

CLASS, Bangladesh

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New developments help children and parents

More than one year after Valencia, I write to you. During 2004 - 2005 we had a big effort to build the Radiotherapy building, which was inaugurated last September 30th. We are very happy because our poor children (80%) will no longer have to use the Cobalt bomb. A new technology with Linear Accelerator will be operating next December. Now, we are involved to raise US$ 1,2 million dollars to buy an MRI equipment. This image technology is of the utmost importance, mainly for the children with brain-, bone- and soft tissue tumors. Today we are “allowed” to do only two MRI per month with public support. However our demands are 30 to 40 MRI exams. So, it will be very important to have this equipment functioning in the new building.

On the other side, since January 2005 we have a transport support for the children who live far from Campinas. As they have to wait many ours to go back home, a beautiful building was constructed. There they play, have school support, have some food /lunch, and there is also a heair-dresser for the mothers. On the second floor, there is a place for parents, where they can sit and talk and get information from other parents who have had a child with cancer.

Concerning SLAOP activities, we had an administrative working groups since Jan 2004 and the Annual Congress in Brazil was held in April 2005. During this year it was possible to rescue the economic health of SLAOP’s finances. Also it was possible to define our work in a LATIN INFANT program, that is connected with LATINCARE for all of South America and the Caribbean, for a survival registry of pediatric cancer (below 15 years of age). It will start to collect data in May 2006. The period of study was defined from 1996-2001. When we will know our reality in different cities and countries, we can delineate future strategies.

You see, a lot has happened since we met in Valencia.

Silvia Brandalise, MD
Director of Boldrini’s Hospital, Campinas, Brazil

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Children with Leukemia meet in Turkey

The fourth International Week for Children with Leukemia in Turkey from May 28th to June 3rd has been a huge success with great participation. During the week, which aimed to increase public awareness on childhood leukemia and other cancers in children, children from almost 30 countries and 300 children from Turkey with their families met, thus providing a platform to enhance the solidarity amongst all children with leukemia. This week was also celebrated with various activities in other countries such as Jordan and Bosnia Herzegovina.

The week started with a kite and balloon festival. The kites painted the sky of Ankara with different colors symbolizing all the children with leukemia around the World. The “NO to Leukemia March” on the second day turned into a carnival with the participation of thousands of people in Ankara. There were several shows performed by our children, volunteers and professional artists. During the week participants had the chance to get to know traditional  Turkish culture and also shared aspects of their own cultures.

On the last day there was a cocktail organized in Ankara with the participation of high level executive officers, heads of the diplomatic missions and international organizations. A play performed by the children was applauded for minutes.

After the program in Ankara the participants flew with a private plane to Antalya in order to spend a joyful holiday. They stayed at one of the best hotels in Turkey and had a great time enjoying the sea and beautiful nature. At the experience sharing meetings, parents and children had the chance to tell their stories in order to take strong steps to realize a much more fruitful cooperation [so that they would have a clearer idea of how to improve cooperation in the future]

Children made trips to historical and touristic localities in Antalya such as the ancient city of Aspendos, Naturland Ecopark etc. As special guests with other children with leukemia from Antalya they watched the show of dolphins and whales.

The yacht tour on the blue waters of the Mediterranean was one of the best moments of the week. All these children from all over the world on the same ship with that big smile on their faces. Even though they didn’t know each other’s languages at the end of the week they all had become very close friends. At the farewell festival everybody was sad because they had to leave their new friends but at the same time they were happy to have experienced such an event with all the others. They returned to their countries feeling much stronger in the fight against childhood leukemia.

All the events were promoted via mass media in Turkey and also in the participants’ countries. Throughout the week we informed the public about the facts of childhood leukemia and other cancers.

LOSEV aims are to make children happier all around the world without any discrimination based on race, ethnic, religion, national origin, gender and social, economic or any other status. All our efforts are for a healthier world and to see the smiling faces of children.

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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Parent associations hold a key role in rehabilitation

Associations founded by the parents of cancer children can act as efficient interest groups to improve the conditions of the patients. This was confirmed at an international seminar in Vilnius, Lithuania, last May. The topics of the seminar included children’s cancer treatments, rehabilitation and social security. Among the participants were parents of children with cancer as well as health care professionals from pediatric oncology wards from three countries around the Baltic Sea: Finland, Lithuania and Estonia. The two-day seminar was arranged by the Finish association of children with cancer, SYLVA, and the Lithuanian association PAGUODA.

“We need mutual cooperation to make the needs of cancer children and their families better known in society. This also helps to develop the social security system and legislation,” said Mrs. Leena Vasankari, executive director of SYLVA. “We must, however, remember that parent associations can only contribute to the development through persevering efforts and work. Parent associations are experts in matters concerning their children.”

“Parent associations should have close contacts with the families of the patients, for whom they should offer rehabilitation of the best kind,” SYLVA’s Board member Mr. Veikko Heikkinen emphasized. According to Mr. Heikkinen, we also need close contacts with decision-makers and regular cooperation with the health care units which treat cancer children. “Legislation as well as social services is not planned only for children with cancer. This is why it is wise to cooperate with organizations working for the children with other long-term illnesses or handicaps,” Mr. Heikkinen continued.

Attention to the quality of life

In Lithuania, about 100 children get cancer every year, most of them blood cancers. Over 80 per cent of the childhood leukemia cases can be cured with effective treatment in the country.

“It is our aim to improve the conditions of cancer children and their quality of life in Lithuania. The anxiety of the parents and child patient is decreased, if they are provided with sufficient up-to-date information about the child’s cancer", said Mrs. Vilija Zapalskiene, chairwoman of PAGUODA from Lithuania.

According to Mrs. Zapalskiene, it is important to prevent cancer children dropping out of ordinary society. PAGUODA has a 3-year programme of rehabilitation and social integration support for the families of cancer children. They also offer a helpline for cancer children, parents and relatives who get free psychological consultation on the phone. 

Mrs. Kirsti Sirkiä, Doctor of Medicine working at the University Hospital of Helsinki, outlined the present situation of children’s cancer treatments in Finland. About 150 children get cancer every year in Finland, most of them being blood cancers. In recent years, the results in children’s cancer treatments in Finland have also improved greatly, and they are now European top level. 

Moreover, Professor Lina Rageliene from the University Hospital of Vilnius gave a detailed presentation of children’s cancer treatments in Lithuania. Mrs. Marje Oja, executive director of the Estonian parent association talked about cancer treatments in her country.

Common interests advanced by regional cooperation

The cooperation of Finnish SYLVA with Estonian child cancer organizations began already in the early ‘90s. After that, SYLVA and the Estonians together arranged together special camps for  teenagers with cancer, so that either the Estonians have come to Finland, or vice versa.

Latvia and St. Petersburg in Russia joined later in cooperation, and the latest newcomer is Lithuania.

Chances for closer mutual contacts were also investigated in October 2004, when a seminar was arranged in Helsinki for the parent associations and health care professionals working with cancer children in St. Petersburg, Estonia, Latvia, Lithuania, and Finland.

- We want to improve the quality of life of cancer children and adolescents, and offer them better rehabilitation. In our view, rehabilitation should be tailored to the individual needs of various cancer patient groups. We believe that cooperation between parent associations and health care professionals helps improve the conditions of cancer children and adolescents, Mrs. Vasankari said.

An international camp for adolescents from 13 to 17 years of age was also arranged near Tallinn, Estonia, in May 2005. The participants came from Finland, Estonia, Lithuania, Latvia, and St. Petersburg. A second camp for adolescents from these countries will take place in St. Petersburg May, 2006.

Tuula Virkkunen

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Help for children with cancer

We are glad to inform you that recently we carried out a solemn opening of the spiritual rehabilitation center of our group “Help to children with cancer”. On this occasion sponsors gathered, mothers of children under treatment and of those who have already died, the assistants, the survivors and representatives of the press. Everything was just wonderful. The newspapers reported remarkably about a holiday. Survivors and some parents went with me to the hospital, where they arranged a party for the children. We gave them presents and celebrated with fruits and pies. The faces of the children glowed with happiness, which was the best gift of this day!

Tatyana Stankova.  Wolgograd

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Annoucements

February 15, 2006    International Childhood Cancer Day

Theme: Childhood Cancer in the Classroom

Patients will be asked to take photos from their schooling situation

For information contact: throughmyeyes@kidscancercare.ab.ca.

March 1 – 4, 2006        7th Continental Meeting of the International Society of Pediatric Oncology in Africa

Marrakech, Morocco.     Contact: smhop@menara.ma.    For details see www.smhop.info  

April 6-7, 2006            ICCCPO Asia Parents Meeting

In conjunction with SIOP Asia Congress.  Shanghai, China

15 scholarships for participants from developing counties or for regional participants are available for application.

Deadline Dec. 20, 2005 

For more information and the program contact:  Benson Pau (Co-organizer)

Tel: +852 2796 1331 or +852 21486743        icccpo-asia2006@pkwfoundation.org 

September 17 – 21, 2006        ICCCPO Parents Meeting and Annual General Assembly

Geneva, Switzerland

The ICCCPO Annual Meeting will be held in conjunction with SIOP (International Society of pediatric Oncology) in Geneva.  Further details will be published on the website: www.icccpo.org as they become available

The organiser for the parent / survivor program is Christine Wandzura. Contact her on: wandzura@kidscancercare.ab.ca  

For SIOP-information contact: www.siop.nl 

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Books and booklets

“Bradford and the Journey to the Desert of Lop”

Dawn Van Zant (text).  Alexander Levitas (illustrations)

Our new hard cover book will be available the first week in November. The new line of children’s non-violent toys and books produced by Wild Heart Ranch empowers children with cancer and raises awareness for the endangered wild Bactrian camel. 

We are donating a limited amount of these books to Children’s hospitals and oncology wards. Please notify us if your department is interested and contact:

Toll Free: +1.888.889.9213. Kim Baker Kim@wildheartranch.com

“Bradford and the Journey to the Desert of Lop” has been awarded Dr. Toy’s 100 Best Children’s Products for 2005. (ISBN: 0-9761768-2-3)

These new booklets are available at: UKCCSG (The United Kingdom Children’s Cancer Study Group)

For more information contact: www.ukccsg.org.uk

Brothers & Sisters:    A guide for parents of children and young people with cancer

My Brother has Cancer:    For children up to age nine.

When your Brother or sister gets Cancer:    For older children

Grandparents:        A guide for grandparents of children and young people with cancer

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