Chair's Report to the ICCCPO 1999 Annual General Assembly |
Mark Chesler |
|
Montreal, Canada - September 14, 1999 |
This has been a very exciting year for ICCCPO and for parent organizations throughout the world. We have seen major growth in four areas: new membership and greater outreach to parent organizations more effective internal operations and management of our own affairs, development of programs that serve member organizations' interests, and improved working relationships with SIOP and other organizations. Many challenges on these same dimensions face us in the years ahead as well.
Expanded membership. This year the Executive Committee recommended to the Annual General Assembly the admission of 11 new
organisations representing 8 new nations as members (last year the AGA approved 7 new organizations representing 6 nations), so we are growing rapidly. Many more organizations have expressed an interest in joining ICCCPO, and a number of them are from the less financially wealthy nations of the world. We are continuing conversations and providing applications to a number of them who have been in attendance at various meetings or who have written to the Secretariat asking for application information.
Members of the ICCCPO Board have traveled to parent organization conferences in several other nations during this past year. The ICCCPO NEWSLETTER also has been an excellent forum for sharing information and generating interest in our organization and its plans and programs. The success of this 1999 parent meeting and this Annual General Assembly is further evidence of the growth of ICCCPO. I especially want to Marianne Naafs-Wilstra for her efforts to organize these meetings. With assistance from the Candlelighters Childhood Cancer Foundation - Canada we were able to generate the financial resources to enable so many people to attend. The lectures have been of high quality, and very informative, and the workshop sessions have been excellent opportunities for parents from many nations to share ideas and programs, problems and opportunities, with one another.
Our growth also presents us with some challenges. Since many of the newer organizations are from nations or areas with lesser financial resources, they often lack the resources to attend our international meetings. They also have difficulty paying the full annual membership fees. We need to develop better ways of recruiting new member organizations, and of finding ways to financially support their ability to join us in face to face discussion. We already have provisions for reduced dues' payments (upon request and approval by the Executive Committee), but perhaps wealthier organizations can consider paying annual dues (and/or travel costs to meetings) for another organization as well as their own.
More effective internal operations. ICCCPO is a young Confederation and we are still experimenting with various ways of operating. The Secretariat, located in Toronto, Canada, has been operating very successfully, and has improved our ability to conduct business between Executive Committee meetings. The development of an electronic mail system (email) provides instantaneous linkages among members of the ICCCPO Executive Committee and has vastly increased our ability to communicate and make decisions between Executive Committee and Annual General Assembly meetings. The Newsletter operates as a house organ, as well as a source of information about childhood cancer and parent organizations. The Executive Committee held a successful meeting in London, in February, 1999, and met for two days in advance of this AGA meeting in Montreal, 1999. The Executive Committee has been able to travel and meet in ways that have made minimal drain on ICCCPO's budget; Executive Committee members' attendance at meetings has been supported largely by their own parent organizations or private resources. As a result of this procedure, and Canada's generous support of the Secretariat, ICCCPO's administrative costs have been very minimal. The Executive Committee has established a Fund-raising Task Force, and several efforts have been to solicit funds from corporate and foundation sources. This will be an area of greater concern and attention in the coming year. We also are tightening our systems of budgeting and financial accountability.
As part of our effort to operate as effectively as possible we are recommending several by-law changes for adoption by the AGA. The challenges in this regard including designing better ways of encouraging reciprocal communication with groups; although through the Newsletter we send out plenty of
information, we often do not hear from member organizations outside of the annual meetings. In addition, we must find better ways of financing our operations and programs.
Programs and services. We continue to expand our programs and the services we provide to member organizations and to parents who are not part of organized parent groups. The lectures and workshops available at yearly meetings are an opportunity for mutual education and sharing amongst participants. This is a very important medium for learning. In addition, visits to member countries, to meetings of national and regional organizations, lets ICCCPO representatives make contact with larger numbers of parents of children with cancer and additional childhood cancer parent organizations and
organisers. We are developing an ICCCPO Website, and hope that eventually individual members will be able to link their own websites to this site.
This year the Executive Committee decided to allocate funds to support up to 12 scholarships to enable members whose organizations do not have sufficient financial resources to attend these meetings. Finances permitting, we will continue to make that a focus of our budgeting priorities.
We are still challenged to learn how to serve local and national parent groups better. Partly this is an informational problem, and we have scheduled a session where we all can discuss this concern. Partly, however, it is a problem of having insufficient financial resources to do all the things we would like to do.
Relations with SIOP (International Society of Pediatric Oncologists). It is important that we meet with members of SIOP, individually and on an organizational basis, to help educate them and to be educated by them on matters of mutual interest. In this regard, we are pleased with new developments in an increasingly cooperative relationship between ICCCPO and SIOP. Physicians involved in the SIOP leadership invited ICCCPO representatives to speak at these 1999 SIOP meetings, submit abstracts for presentation, include such abstracts in the SIOP brochure, and themselves to attend and make presentations at (or simply participate in) our sessions. We anticipate that these physicians will continue be very helpful in our efforts to make contact with parents and parent organizations in other nations, especially in South America, Africa and Asia.
Members of the ICCCPO Executive Committee will meet with the SIOP Board, the SIOP-PODC Committee and SIOP's Psychosocial Committee during the 1999 SIOP/ICCCPO meetings this year and anticipate similar cooperation and mutual meetings at the October, 2000, SIOP meetings in Amsterdam. We will hold our 2000 Annual General Assembly meeting in Amsterdam, to coincide with the SIOP meetings.
The challenges we face as a result of this important cooperative relationship center on how we can retain our own identity and program focus while we work closely with another organization (SIOP). The high cost (of
accommodations and travel) and the inconvenience of meeting at hotels and cities where SIOP meets is just one issue we must solve. In the future, we probably will meet with SIOP when its meetings are centrally located for our membership, but meet separately when they meet in hard-to-access sites.
We would like to hear from you. We would like to hear about the successes of your parent organization. We would like to know what problems your parent organization is facing - or what problems you are having in forming a parent organization. We would like to know how you think ICCCPO can help you and other parents in your nation. Write us. Fax us. Call us. Email us. Attend some of these meetings where other parents, from other nations, discuss how to solve universal problems facing parents of children with cancer. Together we can make a difference across the globe.