by Sabine Karner and Gerlind Bode,
The annual ICCCPO conference was held jointly with the Congress of the International Society of Pediatric Oncology (SIOP) in Toronto (Canada) from September 25th – 28th, 2013.
Around 1900 participants from 92 different countries came to Toronto and enjoyed the spirit of the largest city in Canada, the provincial capital of Ontario and a thriving multi-cultural city. Canada is recognized as the country of the origin of ice hockey, which was visible throughout the congress.
Hot Topic “Personalized Medicine”
Two childhood cancer survivors, perfectly moderated the opening ceremony and inspired the participants for the upcoming congress days. In addition, Andrew Haley, who is a world class Paralympic swimmer and a childhood cancer survivor gave a presentation of his life history and the importance of sport activities for him. This was followed by several wonderful compositions by the Lilian School Choir.
Among the hot topics of the general SIOP sessions were those related to “Personalized Medicine” in pediatric oncology. “The new insights into the molecular mechanisms underlying brain tumor development are rapidly changing the daily clinical practice,” said Giorgio Perilongo (SIOP president).
Education, Education, Education
Around 100 parent and survivor representatives attended the congress. Delegates from all around the world, from many North American countries but also as far as Asia, Africa, Latin-America, and Europe came to listen, to exchange and interact. A very interesting and stimulating program was set up by Ruth Hoffman (USA), which encompassed workshops and free paper presentations by physicians, psychologists and parents and survivors. The ICCCPO program was also very attractive for nurses, psychologists and doctors.
On the Education Day (always a day before the SIOP conference formally starts) the following topics, which are very useful for the daily work of a childhood cancer organization, were addressed:
- The needs of Adolescents and Young Adults (AYA) with Cancer: Are these being met and how? Ronald Barr (Canada) gave a comprehensive insight into the international situation. This was followed by a lively discussion within the workshop groups, where the different situations and wishes about Access to Care could be addressed.
- Aziza Shad (USA) stated with her presentation to pain management that no child with cancer would have to suffer from pain if certain rules would be followed. After this the participants had the opportunity to address advocacy statements, which would lead to improving quality of life and reducing suffering as well as lessening the anxiety of careers and families.
The following presentations addressed―among others―therapy related issues like proton versus photon therapy, targeted therapy, translating treatment protocols from developed to developing settings and drug shortage as well as a report on psychosocial support services, ongoing projects and health policy initiatives in different areas of the world.
“Looking after children and young people when they are neutropenic: isolation or normality?” was the topic of the joint nurses and parent symposium. A physician, a nurse and a parent representative demonstrated the lack of scientific evidence in the treatment of neutropenic patients. Good hygiene, including frequent hand washing and good dental care are the main treatment related issues. Marcela Zubieta addressed the parents’ role in the care of neutropenic children, and how important it is for them to have an active role in the care of their children.
Joint SIOP-ICCCPO-Sanofi Advocacy Event
In the Sanofi advocacy event SIOP- and ICCCPO-members joined for a session on “Access to Quality and Support in resource-constrained settings.” Important projects (sponsored by “My Child Matters” were presented, which showed the high importance of close partnership between medical staff and parent organizations all around the world. The topics were:
- Improving Access to Medicines in Bolivia through Joint Actions with Childhood Cancer
- Telepathologic Microscope Conference: A German – Russian Experience
- Getting the Authorities to Listen and Care. Why Bother?
- Improving Childhood Cancer Care and Follow-up. Has Paraguay Found the Right Answer?
- Tapping into the Corporate World in Ghana
Great Local Hosts
Ruth Hoffman, ICCCPO Board member & Chair of the ICCCPO Conference Organizing Committee, Elizabeth Peeters (b.r.a.i.n.child), Susan Awrey (Sick Kids) the Local Organizing Committee members did a tremendous job to find nice venues for the Meet & Greet as well as the ICCCPO-Dinner, which was held in the “360 The Restaurant” at the CN Tower, one of Toronto’s most prominent places which offers unforgettable food combined with a magnificent revolving view of Toronto more than 351 metres below.
The sponsor of the Meet and Greet was the Canadian Association of Pediatric Oncology Camps (CAPOC) http://cancercamps.ca/main/. B.r.a.i.n.child was the sponsor of the ICCCPO Gala Dinner and other congress logistics (board food etc.)http://www.sickkids.ca/brainchild/.
The annual SIOP Gala Dinner took place at the Hockey Hall of Fame, which is a museum dedicated to the history of ice hockey. It was a wonderful idea to set up the dinner in this special site, because the guests could walk around and learn a lot about Canadian ice hockey (and the National Hockey League) as well as enjoy the lovely food while having pleasant conversations with their colleagues, friends and other SIOP participants.
ICCCPO General Assembly
At the ICCCPO Annual General Assembly, two board members stepped down from the ICCCPO board as their terms were finished: Edith Grynszpanchol after having served 13 years, and Anita Kienesberger, after having served 9 years. The AGA assembly elected two new board members: Luisa Basset (Spain, Federacion Española de Padres del Ninos con Cancer (F.E.P.N.C.)) and Mary McGowan (Australia, Children’s Cancer Centre Parent Advisory Group (CCCPAG)). Eight new parent organizations were admitted, one member changed from associate to a full membership and two organizations were dropped from the membership list as they could no longer be contacted or wished to end their membership. This means that ICCCPO now counts 177 members from 90 countries.
Appointed for chair of the board was Carmen Auste from the Philippines, and vice-chair Ruth Hoffman. The assembly also voted for a change of name. The rather complicated “International Confederation of Childhood Cancer Parent Organizsations” – which meanwhile would have to be added by “Survivors” – will in future be: “Childhood Cancer International”- CCI for short. After all the legal and organizational hurdles are done, this will be announced publically with the new logo, stationary, website etc.
A very touching moment was the presentation of an animated PowerPoint about 20 years of ICCCPO. Gerlind and Marianne collected a lot of pictures from the many activities in the last years and presented them at the 20 year anniversary in Valencia. From this, Carmen Auste and her team prepared this presentation which is―combined with music by a cancer patient ―a wonderful show of the ICCCPO-history (see video below).
Program for Survivor Groups
This year, around 15 survivor group delegates from 10 different countries attended the conference. The survivors program started with a one day-session, which was organized by Michaela Willi, Meike Naafs and Sabine Karner (ICCSN Committee). Survivors from Austria, Croatia, Hong Kong, India, Germany, The Netherlands and Japan presented their latest activities. It was wonderful to see which interesting projects and activities are ongoing. This was a good opportunity to get inspired and strengthen the collaboration. Thanks a lot to the Ivey Business School, who sponsored the room for this one day meeting. On the next day, a two hours bus tour gave us the opportunity to see the highlights of Toronto.
Finally, after three days of presentations, networking possibilities, meetings and gatherings, the SIOP Closing Ceremony was a touching ending of this wonderful congress. Dr. Eric Bouffet, Chairman of the SIOP Local Organizing Committee, handed over a personal tricot of the National Hockey League (NHL) to Dr. Alan Davidson, the upcoming chair of the conference in Cape Town. For the second time, the SIOP congress will be held in Africa. We look forward to see you in Cape Town (South Africa) from 8 – 11 of October 2015.