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Message from the Chair

Hong Kong Conference, September 2013

In parallel and at times in conjunction with the SIOP Conference, ICCCPO successfully held its Annual Conference 2013 from 25th to 27th September in Hong Kong, China.

Since our last communication many significant events have happened, some really exciting and something to look forward to, and another, a sad episode in the history of ICCCPO that needs to be put behind us.

So let me get the sad news out of the way first. You may recall the debate around World Child Cancer (WCC), the vote you took as members and the subsequent letters that followed. The situation as it now stands is as follows:
The association between ICCCPO and the organization ICCCPO founded, called WCC, has come to an end after a decision taken by the majority of the trustees of WCC. These trustees voted to transfer all the assets, operations and staff out of WCC to a charity chaired by Mr Gordon Morrison, called World Child Cancer UK (old names for this charity were Gordon Morrison Charitable Trust and The Gordon Morrison Family Trust). The trustees also transferred the branding and licencing rights of WCC to a company called World Child Cancer Global Limited, at the time headed-up by Professor Tim Eden. The result of all these decisions is that ICCCPO was left the sole member of an empty shell called World Child Cancer that is still controlled by the trustees of WCC according to UK law.*

The ICCCPO members present at the AGA voted to no longer have any official partnership or association with WCC-UK and WCCG Ltd for as long as the trustees and directors who were responsible for the actions above remain associated with these charities and /or WCC in any way whatsoever.

And now to the exciting positive developments that have happened

Amendments ICCCPO Articles of Confederation

The proposed amendments to the ICCCPO Articles of Confederation as circulated to members, were accepted by the AGA. The most significant changes are that ICCCPO is now able to raise funds in collaboration with member nations, that survivors are mentioned more prominently, the name of the Executive Committee has changed to Board of Trustees, and certain duties and responsibilities of the AGA and Board of Trustees were amended or elaborated upon.

Excellence conference in Hong Kong

You have all read the recent ICCCPO newsletter and so know of the excellent conference that was held in Hong Kong. Allow me an extra special thank you to the local ICCCPO host, Pau Kwong Wun Charitable Foundation and their team. Under the excellent guidance and leadership of Benson and Ammy Pau they did an outstanding job. What stands out about the team is that nothing was ever too much trouble and all problems were resolved with a smile and with typical Hong Kong efficiency.

Memorandum of Understanding

It was at this meeting that ICCCPO, represented by myself, and SIOP, represented by the president, Dr. Gabriele Calaminus, formally signed a Memorandum of Understanding (MoU) thereby formalizing the relationship between our two organizations and bringing us even closer together than before. The signing was witnessed by Dr. Oleg Chestnov, Assistant Director General of  WHO, Prof. Giorgio Perilongo, President-elect SIOP and Mr Benson Pau,  vice-Chair of ICCCPO as well as all those who attended the ICCCPO dinner.
Briefly the areas of collaboration agreed to in the MoU involve: (a) advocacy of regional and international childhood cancer issues; (b) regional and international awareness creation; (c) activities around annual global childhood cancer awareness events; (d) twinning projects between developed and developing regions; and (e) raising the required resources to fund these activities. The last two points are particularly significant as they are two areas where ICCCPO will now play a more prominent role.

As regards point (d), now that ICCCPO no longer has any formal ties with WCC and its affiliates, ICCCPO decided to establish a partnership with SIOP to enable us to directly support twinning operations between ICCCPO and our members and members of SIOP. This also means that ICCCPO members can now fund twinning operations directly through the ICCCPO-SIOP partnership should they wish to and no longer need to do this through other third parties.

Point (e) now makes it possible for ICCCPO to raise resources keeping in mind the relevant clauses regulating this in the ICCCPO Articles of Confederation. To this end it gives me great pleasure to share with you that at the Hong Kong Conference, Dr. Chestnov from the WHO, identified ICCCPO as the organisation the WHO will endorse to set-up a “Universal Fund for Childhood Cancer”. This fund will focus on, but not be restricted to: increasing awareness for early diagnosis; making childhood cancer medicines available and accessible globally; improving pain management for children with cancer wherever they are being treated. Clearly this is still in the very early stages of development and the details of how this fund will operate and the role that WHO will play still needs to be discussed and agreed. So it will still take many months before we will be able to announce to members that the fund is operational.

While on the point of fundraising, I appeal to all our members to please get behind and start working actively on the Rotary Initiative that is currently being organised through ICCCPO. It is a wonderful opportunity to create an awareness of childhood cancer and at the same time raise funds for not only your own projects, but contribute to international ICCCPO projects as well.

In Hong Kong during his keynote lecture, Dr. Chestnov emphasized that WHO is committed to supporting national efforts to control childhood cancer and made special mention of the important role parent organisations play in redressing the inequalities that exist between high-income countries and low- to middle-income countries. It is particularly encouraging to hear that the role of parent groups is being recognized at this level.

ICCCPO Annual General Assembly

At the ICCCPO Annual General Assembly, Mrs. Ruth Hoffman (Executive Director, American Childhood Cancer Organization) from the USA and Mrs. Poonam Bagai (Founder Chairman, Cankids…Kidscan) from India, were elected as a new board members. At the same meeting Mr Simon Lala (New Zealand) had to step down from the board after serving his full term on the board. He held various positions, one of these as chair of ICCCPO from 2003 to 2007. At the meeting he was unanimously voted in as a honorary member of ICCCPO for his contribution to ICCCPO work over a period spanning 14 years.  Also at the meeting, Anders Wollmén (Sweden) stepped down from the board due to personal reasons. He for many years was responsible for the ICCCPO programme at our annual conferences. We are therefore very grateful that he has agreed to assist those now responsible for the ICCCPO programme wherever he can be of help. The exit of these members of the board leaves the board thin on experience and so to retain experience on the board, Mrs. Edith Grynszpancholc had her term on the board extended by one year by means of a special resolution approved by the AGA.

At the AGA 15 parent organizations were accepted as new members so membership of ICCCPO now stands at 171 member groups from 88 countries. With ICCCPO membership growing and with existing members expanding their services, we can and must place childhood cancer more prominently on the global health agenda.

Best wishes to all of you as you continue the work you do for children with cancer.

Kenneth Dollman, South Africa

Chair of ICCCPO

picture of the new ICCCPO board 2013/2014The new ICCCPO Board of Trustees 2013/2014

  • Kenneth Dollman (South Africa), Chair
  • Benson Pau (China), Vice-Chair and Treasurer
  • Anita Kienesberger (Austria),  Member
  • Carmen Auste (The Philippines), Member
  • Edith Grynszpancholc (Argentina),  Member
  • Marcela Zubieta Acuna (Chile), Member
  • Ruth Hoffman (USA), Member
  • Poonam Bagai (India), Member

The new board from left to right:
P. Bagai, A. Kienesberger, M. Zubieta Acuna (first row), K. Dollman, B. Pau, R. Hoffman, E. Grynszpancholc, C. Auste (second row)

* For those of you who may be interested in more detail re the background to setting up WCC and the current situation on the trustees heading up WCC UK and WCCG Ltd, please make enquiries to the ICCCPO Head Office (new name for the Secretariat).

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