ICCCPO Newsletter       2007 - No 1

 

Index

Notes from the Editors

Childhope
IDA Foundation
Greetings from the Survivor Network
Peer support helps cancer survivors
Meeting in Bali
My Second defeat (!)
8th Rafi Memorial Painting competition
Pediatric Oncology Training in Pakistan
Fundraising for Children in Cameroon
We will meet again!
Journal for families of children with cancer established in Russia
Book Reviews
Miscellaneous
For contact details of the ICCCPO Executive Committee, click here

 

Articles in the original newsletter that are now separate

Title

Author

Link

The Unmet needs of Children with Cancer ITCC Go
The Erice Statement.  Long term survivors of childhood cancer: cure and care Go
The Clinic Nanny Project Agathe Schwarzinger & Nina. Gebetsberger Go

 

Notes from the Editors

There have been interesting developments for ICCCPO recently. The board met for three days in the family house of our associate member Click Sargent in Prestwick, Scotland. One of these days was spent entirely on strategic planning, which  resulted in an action plan for the next five years that forces the board members and the committee members to work even harder. We know, however, that among our membership there are many dedicated and experienced people who may wish to help us to do our work, e.g. by the planning of regional meetings, working in ICCCPO committees etc. If you wish to make a contribution, please contact one of the board members. Their addresses are on the last page of this newsletter.

The ICCCPO regional meeting in Bali, Indonesia, was very successful. A short report in this newsletter will give you some impressions. A more detailed report is available from the Secretariat.

In May 2007, a meeting for former Yugoslavian countries will be organized in Sarajevo (Bosnia-Hercegovina), and in August 2007, a meeting for Russian speaking groups in St. Petersburg (Russia) is on the agenda. Details are to be found in this newsletter.

We have no final programme yet for the ICCCPO-Meeting in Mumbai. But we will publish it on our website it as soon as it is available. Please keep in mind that the deadline for applying for a stipend was May 14!

What else is in this newsletter? You can read more about the recently founded World Child Cancer Foundation (WCCF), we publish some of the lectures from Geneva, and we give information about two projects in which ICCCPO is involved. In October 2006, ICCCPO representatives took part in an interesting multidisciplinary working conference in Erice, Sicily (Italy) about "Cure and Care after Childhood Cancer". The so called Erice Statement was the result of two days hard work. Feel free to translate this statement and use this in your advocacy activities, if possible jointly with doctors, nurses, psychologists and epidemiologists.

We wish you much success with your organisations and keep us informed about your activities!

Marianne Naafs-Wilstra

Gerlind Bode

 

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Childhope

The CHILDHOPE project is a new approach in pediatric cancer treatment since it brings – from bench to bedside (and back) – an innovative technology as yet never applied in children with advanced or refractory haematopoietic malignancies. ICCCPO is one of the partners of Childhope, a translational research project funded by the European Union.

    - Other partners are Centre Léon Bérard (Fr), Fondazione Matilde Tettamanti e Menotti de Marchi, Università Milano Bicocca (It),

    - The Norwegian Radium Hospital (No)

    - Etablissement Français du Sang (Fr),

    - University College London (UK),

    - Westfälishe Wilhelms-Universität Münster (De)
    - ACIES (Fr).

Leukemias are the most common cancers affecting children while malignant lymphomas – including Non-Hodgkin lymphomas (NHL) – come in third position after brain tumours. A significant number of children with leukemia/lymphomas still fail current therapies. The aim of the CHILDHOPE project is to develop a safe and efficient adoptive immunotherapy for children with advanced or refractory malignancies. CHILDHOPE particularly focuses on three paediatric tumours: Acute B-lineage Lymphoblastic leukaemia, Non-Hodgkin B-lineage lymphoma and Acute Myeloid Leukemia.

The CHILDHOPE translational research project will focus on:

    - Improving and testing the efficacy and the safety of anti-leukemia/lymphoma chimaeric T cells in relevant preclinical models in vitro and in vivo in mice.

    - Scaling-up this technology to numbers suitable for a clinical application in children with haematopoietic malignancies.

    - Based on biological material obtained from preclinical models and from children treated with these genetically engineered T cells, dissecting the interface between the host’s tumour and immune cells and use this knowledge to understand the mechanisms of anti-tumour action, validate novel targets and diagnostic tools specific to children affected with leukemia or lymphomas.

The CHILDHOPE project is built on the excellence of a network of EU-based partners with a broad experience in the field of paediatric haematology and oncology, immunology and cell & gene therapies and integrates the International Confederation of Parents of Children with Cancer and an SME specialised in the project management.

ICCCPO’s role lies in the field of ethics and the dissemination of information around ad results of the project.

www.childhope.de 

Marianne Naafs-Wilstra
Contact: icccpo@vokk.nl 

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IDA Foundation

IDA Foundation is the world’s largest not-for-profit supplier of essential medicines and medical supplies. IDA supplies quality assured products at the lowest possible price to low- medium income countries. In addition, IDA provides procurement agency services and offers consultancy and training on topics related to pharmaceutical supply management.

IDA Mission statement: To provide high Quality essential medicines and medical supplies at the lowest possible price to the not-for-profit sector in low and medium income countries.

IDA Foundation is based in the Netherlands and is ISO 9001:2000, GMP and GDP certified. The quality of IDA products is verified in IDA’s GLP-based laboratories.
For more than 30 years IDA has worked out of her headquarters in Amsterdam. The environment in which our customers operate is changing constantly and we feel that IDA needs to change in order to keep abreast of developments, which ultimately should result in better, fully rounded service to our customers. Therefore in January 2005 IDA opened its first regional NGO office: IDA Regional Office Nairobi focusing on Great Lakes and Horn of Africa, i.e. Eritrea, Ethiopia, Kenya, Malawi, Somalia, Sudan, Tanzania, Uganda, Zambia.

Products

IDA Foundation is specialised in providing the pharmaceutical products included in the WHO Essential List of Medicines. In addition, IDA Foundation supplies a range of other items needed in healthcare settings such as medical supplies, laboratory requirements, diagnostic tests and reagents. IDA can supply a lot more medicines and medical supplies. A catalogue on the IDA website gives a complete overview.

More information:

     IDA Foundation.     P.O. Box 37098, 1030 AB Amsterdam.     the Netherlands

     www.idafoundation.org  / www.ida.nl
     Tel. +31 (020) 4033051      Fax +31 (020) 4031854

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Greetings from the Survivor Network

Just a few quick reminders:

- We would love to hear from any survivor groups we don't already hear from about developments in their country, or from anyone who is thinking of starting/ wanting to develop a group and needs some advice from others who have been in your position.

- We would love to see survivors who are leaders in the survivor network in their own country, or who are leading the development of a group at the conference in Mumbai at the end of September.

- I would love to hear from anyone who believes
that they have a suitable presentation topic for the -survivor network sessions in Mumbai.

Prudence Walker-Cuttance
Chairperson
International Childhood Cancer Survivor Network
iccsnetwork@gmail.com

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Peer support helps cancer survivors

A new study, published in the December 15th, 2006 issue of CANCER reveals that the population of 15-29 year-old cancer survivors, feel that socially connecting with other cancer-afflicted peers of the same age can be more beneficial than receiving support from family and friends - contrary to what their doctors believe. Adolescent and young adult cancer patients rank support from family, friends and other cancer survivors as high priority in their healthcare needs.

Researchers from the University of Southern California conducted a comprehensive survey with oncologists, psychologists, nurses, social workers and young adult cancer survivors to better characterise the needs of this patient population and rank them in terms of importance. According to lead author Dr. Brad Zabrack: “Health professionals and survivors value highly the support of family and friends. However, meeting other young people who share a common experience becomes an opportunity for young adult cancer patients and survivors to address common concerns, such as coping with uncertainty about one’s health and future, feelings of being alone and isolated, body changes, sexuality and intimacy, dating and relationships, and employment issues.”

The study also found that this particular population prefers to be treated by physicians who are sensitive to their age-specific needs They want to see doctors who understand what is important to a young adult at this stage of life - intuitively know how they think and act and, as a result, prescribe treatments best suited for them.
Other high priority health and supportive care needs reported by health professionals and young adult survivors were having adequate health insurance and on-going surveillance and assessment of long-term effects of treatment.

Despite dramatic improvements in childhood cancer survival rates, studies show the incidence of cancer in adolescents and young adults has actually risen higher than in children and older adult patients. Moreover, the improvement in five-year survival for this population has been poorer than average.

Scientists propose that dramatic physical, psychological and social changes that occur during adolescence may contribute to the different outcomes. Therefore, understanding the unique treatment needs of adolescents and young adults with cancer may yield better understanding of cancer management. “These findings provide oncology professionals and young adult cancer survivors with insight into each others’ values and perspectives,” conclude the authors.

They add that the study also points to a need for more age-appropriate educational materials written in a way that makes sense and has meaning for adolescents and young adults.

Source: “Assessing the Health Care Needs of Adolescent and Young Adult Cancer Patients and Survivors.” CANCER; Published Online: November 13, 2006 (DOI: 10.1002/cncr.22338)

Print Issue Date: December 15, 2006

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Meeting in Bali

The ICCCPO Asia Regional Meeting was held in Bali, Indonesia on 5-7 April 2007. There were 97 participants with 22 from 12 countries other than Indonesia and 75 from 10 cities in Indonesia.

The theme of the meeting was “Keep Hope Alive Together” and the meeting provided an invaluable opportunity for all participants to share their experiences, knowledge and discuss challenges that they are all facing, from the diversity of speakers including parent groups, survivors, nurses and doctors. 

There were several participants attending ICCCPO event for the first time, including Pakistan, Malaysia, Turkey, and Vietnam. Those non-ICCCPO member participants from Vietnam, Malaysia, and Jordan showed great interest to the ICCCPO event and hopefully one day they would become ICCCPO members.

For Indonesians, it was an “ice breaking” and for the first time doctors, nurses, parents, survivors, psychologists from 15 centres all over Indonesia had the opportunity to touch base on many issues of childhood cancer from different perspective. This Meeting had given a new perspective and ideas to some centres to improve themselves. The need to have more meetings together among parents, doctors, nurses, survivors is demanded.

Another encouraging outcome is that - inspired by the meeting - the participants from Makassar and Bali of Indonesia showed the intention to set up parent groups.

The pre-meeting activity in Bali was organized on 26 March 2007 by the local organizing committee on behalf of ICCCPO as Bali has only 1 government general hospital and yet no pediatric oncology ward. It is still believed in Bali that childhood cancer is incurable and children with cancer have no chance to survive. On behalf of ICCCPO, the organizing committee offered to organize a public awareness event to the community on 26 March 2007. About 290 participants consisting of parents, doctors, nurses, primary care-givers, social workers, were attending a public awareness day with a theme “Childhood cancer is curable if detected early”.

A Meet & Greet cocktail party was held at the pool near the beach at the Patra Hotel coffee shop, a very relaxing atmosphere with some participants wearing their own traditional costumes. There was free entertainment from voluntary singers among the participants. Also a traditional Balinese dinner was held at Café Lotus in Ubud Village, a well-known village with many painters and art-shops. ICCCPO participants enjoyed very much the 80 minutes BARONG Dance show on a magnificent stage.

There were many people and organizations supported in different ways to make this wonderful meeting happen. Besides the tremendous effort of some parents, doctors and volunteers, there was great support from Dr. Achmad Hardiman from the Ministry of Health, Governor of Bali, the Dean of Medical Faculty of the University of Bali, Prof. Iskandar Wahidiyat, Prof. Moeslichan MZ and Dr. Djajadiman Gatot. ICCCPO contributed financially with stipends to Asian participants from developing countries and local parents; the pharmaceutical companies sponsored doctors to attend the meeting. The Ministry of Culture & Tourism and Coordinator Ministries for Social Welfare sponsored the Meet & Greet and Dinner!

Last but not least, thanks to everyone in the Organizing Committee, the team-work is excellent.

Ira Soelistyo
on behalf of the Organizing Committee

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My Second defeat (!)

Cancer has not ceased to haunt me even after having taken away my eleven year old son, whom we lost after eleven months of tiresome efforts to save his life. Indeed, that was the first major catastrophe in my life. As I could not take that tragedy in a normal sprit, I had to take the challenge of fighting that killer-disease Cancer by all possible means. But as ill luck would have it, that resulted in a second defeat. This time, my confrontation was not with the killer-disease cancer. Instead I fell prey to a sort of “mental cancer” infected by the malignancy of some people. My ignominious defeat this time, resulted in losing my profession, my credibility and long-time source of income. The high-rise palace of my 35 year long career as a journalist has suddenly been crumbled. The only cause of such unwanted gesture is the help given to ease the sufferings of children with leukemia which has become the guiding factor of my life philosophy. I spend a lot of time with the unfortunate cancer-children whom I come across with, help them get treatment and supply medicine for them totally free of cost. This is my fight against human sufferings. But surprisingly enough, for such dispensation of service to humanity, I had to be sacrificed on the altar of by mighty opponents infected by “mental cancer.” The assault has come upon me with such malignancy that instead of allowing me any time to defend, all of the sudden, very arbitrarily, they applied a deadly blow so that I tumbled down.

Background of the incident

As a journalist, I joined Daily Ittefaq, a major daily newspaper of our country, as an apprentice reporter in April 1981. In the short span of six months, the management became happy with my competence and appointed me to be a regular staff reporter, later in just 4 years time, I was promoted to be a senior reporter. Subsequently I was given the responsibility of chief of the Chittagong bureau of the newspaper. In the meantime, in 1998, my only son fell prey to the killer disease leukemia (blood cancer).During the 11 months long arduous process of treatment of my sick son, I gathered very pathetic experiences about the horrifying sufferings of blood cancer patients and their misfortune families. Indeed, that prompted me to work for better chances for these patients as much as possible. I set up a voluntary social organization named Children Leukemia Assistance & Support Services (CLASS) in 1999 with the support of similar unfortunate parents of the region. We rendered numerous humanitarian services to over 500 cancer children and their families through this organization during the last eight years. Unfortunately, about 90% of these children have died meanwhile.

Instead of giving a lengthy account of our performance, we will just mention one project which will demonstrate our commitment to cancer children. The first ever Children’s Cancer-ward in the region of Chittagong was set up by the initiative of our organization in the Chittagong Medical College Hospital. I find no difficulty to meet such expenditure from my own income and that of my wife who is a physician.

But event though I contributed much time to the proper functioning of CLASS, I never failed to do justice to my profession and even never enjoyed lengthy holiday. Unfortunately, instead of being supported for such worthy activities, I fell victim to the hostile mentality of some persons. Such malignancy may have its root in the fact that CLASS has, in the meantime, achieved a considerable social recognition. Activities of this organization have been given wide coverage by various media. Recently, our activities in observance of the International Childhood Cancer day got lavish coverage in print & electronic media. That might have prompted my management to think that I pass most of my time in working for children with cancer. As such, I was advised to resign from my job within a few days of the observance of International Childhood day 2007. Accordingly I did it.

So I have been defeated again. I lost my job.

Osman Gani Mansur
Chairman, CLASS (Bangladesh)

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8th Rafi Memorial Painting competition

The 8th Rafi Memorial Painting Competition 2006 was held on Thursday last amidst festive atmosphere. It needs mentioning here that the event is one of the major yearly functions of Children Leukemia Assistance & Support Services (CLASS), the parents’ organization of Cancer –Children. The event was also supported by Rotary & Rotaract Clubs of Chittagong zone.

This year’s competition was wide-spread taken part by over 8 (eight) hundred school students drawn from fifty-two schools of the Chittagong region. An extraordinary aspect of aforementioned competition was that it was participated by a number of Cancer stuck Children. From 3 pm to 6 pm Safa Arcade Auditorium, the Venue of the competition, was featured by enthusiastic presence of young participants, their guardians & jubilant family members.

Mr. Dhali al Mamoon, professor of fine arts department, Chittagong University, the prime seat of learning in this region & a celebrated painter, was the Chief Judge (Chief of selection committee) on the occasion. Mr. M. A Salam, a leading patron of CLASS & a renowned social worker, graced the occasion as chief guest & distributed the prizes.

It needs mentioning here that Rafi died of Cancer 8 years back after a prolonged treatment of 11 months in Singapore & India.               

CLASS (Bangladesh)

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Pediatric Oncology Training in Pakistan

As a representative of the Senior Expert Service (Bonn, Germany) I had the opportunity to work 8 weeks in Lahore, Pakistan. It was a challenge to work in the Number one cancer institution of Pakistan, the Shaukat Khanum Memorial Cancer Hospital & Research Centre, which has been certified in 2003 as an Associate Member of the International Network for Cancer Treatment and Research. I was, in particular, impressed how this institution is kept up by donations, and that over 70% of the patients (including many from Afghanistan) are treated free of charge.

As a visiting consultant to the Department of Paediatric Oncology (headed by Dr. Alia Zaidi) I had the opportunity to work with the junior staff in the Outpatient clinic (seeing up to 46 patients a day), also in the 30-bed Inpatient Ward (shared with the Adult Oncology Department), and in the 10-bed paediatric chemobay where the chemotherapy is provided. With 250 – 300 new cancer patients every year this Paediatric Oncology Department was the largest I have seen in my professional career. And I was never before confronted with such a large number of advanced cases, e.g. in bone and brain tumors, retinoblastoma’s, sarcomas, Hodgkin’s and Non-Hodgkin’s lymphomas and leukaemia’s.

A need for more institutions like the SKMCH in this country is clearly established. I also saw many cured patients, but also desperate cases (the tears, the sorrow and the pain are the same all over the world in Paediatric Oncology).

I was very impressed by the enormous manpower of this institution (over 1.000 employees) and the ample space for research laboratories on the third floor. The high technical standard of all the equipment (CT, MRI, FC, CLINAC, DNA-Sequencer, PCR-Systems, the hundreds of computers etc.) should also be mentioned. Also the Hospital Information System on-line (including CT and X-ray images). Patient management and therapy application including supportive care are absolutely up to the state-of-the-art, following the newest European and U.K. protocols. The SKMCH doctors were not only highly qualified and competent, but also very caring and sympathetic with their patients.

Teaching and Training in the Department was excellent. I was happy to contribute with a few lectures on Childhood Leukaemia: Cells, Genes, and Therapies; Genetic Aberrations in Leukaemia Cells; The German Childhood Cancer Registry; Protocol Review.

Now, what could be improved?

1.    As treatment of children with cancer begins with an absolute requirement for the correct diagnosis (including subtypes), the cellular diagnostics should be supplemented by Cyto- and Molecular Genetics (I left laboratory guide lines for conventional cytogenetics and FISH with Dr. Usman). Furthermore, tumormarkers like MYCN-amplification is an absolute must for risk-adapted treatment in neuroblastoma.

2.   I wonder if it could be possible to train the paediatric oncologists in cytomorphology, especially in doing the microscopic bone marrow readings of their patients themselves in order to prevent delay of starting the chemotherapy.

3.   Participation of this outstanding institution in international mulicentre, prospective, randomized trials will be the option for the future. Not only the staff will profit but also the patients will obtain the worldwide best. In Paediatric Oncology there is already a world-wide trial (EURAMOS) for osteosarcomas and an Intercontinental Randomized Trial for the Management of Childhood Acute Lymphoblastic Leukaemia (ALL-IC-BFM 2002).

Highlights of my stay were the hospitality and the friendliness of the people in the hospital. My only “lowlight” was, being run over by a motorcycle, however, no broken bones, only bruises.

Fritz Lampert, M.D.
Gießen (Germany)

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Fundraising for Children in Cameroon

In Norway most children with Wilms Tumour survive, because of proper care and access to medicine. In Cameroon most children who get this type of cancer die, because of lack of the same!

In Norway the International Childhood Cancer Day (ICCD) was marked on February 10. This year the Society for the Support of Children with Cancer (in Norwegian SKB) wanted to focus on children with cancer in Africa. We got in touch with professor Peter Hesseling, former leader of the children's clinic at the Stellenbosch Hospital in South-Africa, who is about to start a project in Cameroon, in cooperation with the Cameroon Baptist Convetion. He wants to educate the medical staff in local hospitals, and with simple means and cheap medicine, he claims, that this program will prevent many kids from dying of cancer. This projekt can also provide a standard for other developing countries in the future.

Hesseling has earlier  succeeded with similar programs in Malawi, Namibia and Ghana and presented his results at the SIOP conference in Geneva last autumn.

Professor and specialist of pediatric cancer Sverre O. Lie from Norway is also taking part in the Cameroon project.

To put the project into practice, Hesseling and his team needs money. SKB has already donated 50.000,- Nkr, and many local groups gave their contribution from fundraising on ICCD. 

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We will meet again!

In May, 2005, an international meeting of teenagers (cancer survivors) was held in Estonia. The Estonian Association of parents of cancer children invited teenagers from the Baltic countries, Finland and Russia to the camp. Survivors (13-17 years old) met in a fine place under the name "Klooga Camp" and very fast have got acquainted and made friends with each other.

One year had passed... In the morning of August, 25th, 2006 participants of the second international meeting of cancer survivors arrived in Saint-Petersburg.

The program of the meeting started with the presentation of the participants’ homelands.

Children from Saint-Petersburg as a home team set the example for the others. Then Finnish participants took an initiative being followed by teenagers from Lithuania and girls from Latvia. Afterwards we continued to introduce each other in person. Then all participants were divided into several international groups to play team games. There was a lack of translators, but children managed to use all possible and impossible means of communication. In short, it was fun!

One of the tasks was to make the longest “rope” out of pieces of clothes they were wearing. After listening to the task, participants seemed to be confused for a minute, but soon solutions were found, and every piece was put to use: T-shirts, sneakers, jackets, badges, watches, wallets, necklaces, summer slippers, rings … Everybody enjoyed it!

In the evening the adults gathered to discuss the events of the first day and to exchange impressions. Certainly, we kept thinking about teenagers and their plans for the evening. And what a surprise it was when we found out that they got together in one room to chat.

The next morning we decided to receive more information about their “evening party” and how they had rubbed shoulders with each other. It turned out to be true: in fact they had been talking up to late night, all of them in one room. «What language did you use? » - we were puzzled. «Five (languages)! » - the teenagers responded.

We were glad that from the first day boys and girls from four different countries were able to find a common language.

The second day began with visiting a swimming pool. Then everybody went to the museum "Penates". After dinner the most difficult part of the meeting was scheduled: discussion groups. It had been prepared by our Finnish colleagues. They have been carrying out that activity for several years already, but for us it was the first experience of that kind. Teenagers formed several groups, and received the same task. They had to think about their future. But at first it was necessary to clarify their attitude to the present situation and to the cancer (disease) they had survived from. At first children tried to joke and laugh. But moving from one task to another their frivolous moods were disappearing, and boys and girls started to reflect on themselves and their future. “Here I am - in a year, two, three years. And in five years - who am I? And ten years later? What will happen to me?”

At the end everybody was asked to write a letter to him/her self after ten years. The youngsters were captivated by the task and scribbled messages with high concentration and excitement. And for "dessert" our Finnish colleagues offered to play all-prize lottery.

In the evening we summed up and congratulated each other for the successful carrying out of the second international meeting. There were a lot of warm words and gifts. «We certainly should meet again! » - participants spoke. In conclusion we offered to leave memories on a long paper roll and soon it was covered with drawings, warm words, wishes and messages.

We will ALL TOGETHER meet again in Finland!

Katerina Kiseleva
Executive Director, CAPAC
St. Petersburg (Russia)

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Journal for families of children with cancer established in Russia

Our Russian voluntary organization (NGO) ‘Children and Parents against Cancer’ (Saint-Petersburg, Russia) started to publish a monthly information leaflet ‘Hello!’ in 2001. However limited size of the leaflet does not allow us to highlight all vital problems and the necessary information for the members of the organization and other interested parties. Having studied the experience of our foreign colleagues we came to the conclusion that it will be more effective to publish our own journal. This way we can inform and help families of children with cancer to solve their medical, psychological and legal problems. Further more, we intended to include materials for raising the spirits of the children and their relatives, which is very important for recovery. The main purpose of this project is to give good information to our target groups: families of children who have had cancer or who are in treatment now, parental and charity organization, specialists in different spheres who deal with pediatric oncology and the interested public.

We were able to publish the first issue of the journal ‘Together’ in January 2007 thanks to the financial support within the framework of the Support Program for Socially Significant Activities of Non-for-Profit Organizations ‘Charity Run - Rally of White Nights’ conducted by CAF (Charity Aids Foundation) and also with financial support of Charity Fund ‘Happy World’. The edition of 1000 copies was distributed among families who participate in RVO ‘Children and Parents against Cancer’, in hospitals of Saint-Petersburg where children are being treated. We also have made a direct mailing to parent and charity organization, hospitals and medical organization of Russia and countries of the former USSR: Ukraine, Estonia, Lithuania, Latvia, Armenia, Belorus.

A conference devoted to the establishment of the journal ‘Together’ took place on February, 12 2007 at the information centre ITAR-TASS. The press conference was timed for the International Childhood Cancer Day (ICCD) which is traditionally celebrated all over the world on February, 15th.

This project is really unique as all countries of the former USSR do not have anything of that kind, whereas nearly all parent organizations in other countries of the world have their own journal. We hope that our journal ‘Together’ help to end the lack of information for parents whose children suffer from cancer in Russia. It will be one more step for improving life quality of families with sick children.

Now we start working on the second issue. The position-finding layout of the third issue has been prepared already.

Olga Semenova
Anastasiya Gulyaeva

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Book Reviews

Why Rich People Give

by: Theresa Lloyd:

(Association of charitable foundations, 2004)

Everyone who seeks partnerships with the wealthy and wishes to see a strengthening of their commitment...should read this book. Lord Joel Joffe

“Why Rich People Give” is the result of the first major research into the attitudes of wealthy people in the UK to money - how they create it, keep it and spend it. The book provides an in-depth analysis of the motivations of the rich to support the charitable sector - or not - by giving money, time and expertise. It covers attitudes to faith, family and community, early experiences of giving and motivations, incentives and rewards. It examines relationships with recipient charities, how people give and feelings about wealth and responsibility. The research provides invaluable insights into the perceptions of wealth in the media, the experiences of fundraisers and others in asking wealthy people for money, and the views of professionals such as lawyers and accountants offering them advice. It considers how UK major philanthropy compares to the US and concludes with an enlightening analysis of the implications of the findings and key recommendations.

Why Rich People Give is essential reading for all charities, organisations and institutions aiming to improve the effectiveness of their relationships with major donors, and for those wishing to strengthen the culture and practice of giving among people with substantial means

About the author

Theresa Lloyd is a leading consultant in strategic planning, fundraising and governance for the non-profit sector and also advises families on the development of their philanthropic strategy. She was Director of the Philanthropy UK project, a 3-year initiative set up in 2001, and is now a member of the Philanthropy UK Advisory Board. She wrote the first edition of A Guide to Giving in 2003. Theresa can be reached at www.theresalloyd.co.uk

How to order:

Why Rich People Give     Association of Charitable Foundations, 1st edition, 2004, 368 pages.    ISBN 1 897916 11 6

Copies can be ordered for £15 plus p&p through the Directory of Social Change:  www.philanthropyuk.org/why_rich_people_give.asp

CLIC Sargent recently published:

Chemotherapy, Cakes and Cancer. 

An A-Z for living with childhood cancer. 

The book was written by 14-year-old Megan Blunt, who was diagnoses with osteosarcoma when she was twelve. She wrote it because she could not find any material in the UK suitable for children her age. 

“Chemotherapy, Cakes & Cancer” is available free of charge through treatment centres in the UK. If you like some copies of the English version contact CLIC Sargent or download your free version: www.clicsargent.org.uk/Publicationsandresources/CLICSargentpublications

Cassie Davis

CLIC Sargent.  Griffin House.   161 Hammersmith Road, London, W6 8SG.    Tel. +44 20 87522890

Cassie.davis@clicsargent.org.uk

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Miscellaneous

Donation in memory of Naoki Kojima

Mr and Mrs Kojima, both member of the Childhood Cancer Association of Japan, have donated 1.000.000 ¥ (the equivalent of 6.312) to ICCPO to commemorate their son Naoki’s 21st birthday, in Japan an important event called “Coming of Age”.

His mother, Shizue, whom many of you may know from the ICCCPO conferences, writes the following:

“It is nice to share our feelings toward our son Naoki with other parents and families who have experienced similar loss. I believe most of the parents who lost their child will live with the sorrowful experience and the memories of the child, days, and moments spent with the lost child, rather they would count the ages of the child and imagine how s/he would grow up to be.

When Naoki left us, he was 10 years old and in the fourth grade of the elementary school. Ten years from then has a special meaning for us. He would have celebrated Coming of Age Day this January, and his younger brother will be 20 years old in August this year, which is legal adult age in Japan. Our three boys will be all grown-ups this year.

Naoki is still with us at home, which means we have been keeping his ashes in the urn in the living room. My husband understood my feelings, so he didn't insist to bury Naoki's ashes right away. I now think it is the right time for Naoki to leave us, he is old enough to be independent.”

Shizue Kojima

Chair of International Committee of Children's Cancer Association of Japan

 

LÖSEV, the Turkish group for leukemia in children, again invites for a week long family gathering in Turkey:

From May 26 to June 1, 2007

Participants arrive in Ankara and leave from Antalya.

More details: www.losev.org.tr

 

Interesting Websites:

www.childcancure.org.hk/english/about/   (English Website of the Little Life Warriors Society (Hong Kong)

www.siop.nl                                                    www.siop2007.in gives current information on the SIOP-Conference in Mumbai (India)

 

For changes of addresses (which occur frequently) please check this website: go here

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