by Aimilia Tsirou, Kyttaro
“Adult survivors should not to be isolated or stigmatized but should become both strong and resilient, being able to cultivate a positive attitude!” This is the major concern of the Greek Survivors Association Kyttaro , which means “cell” in Greek.
History of development of survivors group
The roots of Kyttaro go back to the ’90s. There was a small group of young and adolescent survivors very active and energetic ‘under the wings’ of the Greek parents association ‘Floga’. We met each other during activities and celebrations organized by ‘Floga’ parents, our parents. Gradually we formed a group, that started setting aims and goals –one of them: a survivors newsletter. Year by year new survivors were joining the group and when, 10 years ago, the ‘House of Floga’ was founded (hostel that provides accommodation for patients and their families who are not citizens of Athens), we started weekly evening visits to the House while we were playing, discussing and spending time with children and adolescents under treatment. Apart from ‘House of Floga’, we were also visiting the Paediatric Oncology Department, mainly on doctors or nurses’ request, in order to support a patient and his/her family (usually the patient and the survivor-visitor had the same diagnosis)
Meanwhile, we (the majority of the survivors) became adults (18+ in Greece). We had developed a life philosophy and cultivated a significant approach as ‘cancer winners’. We started forming new directions for our goals and activities, and wanted to try some ‘new steps’, independently from our parents.
At the same time, ‘Floga’ (parents association) decided to be member of a national confederation of parents’ associations when an obstacle emerged The association’s constitution allowed as members both parents and survivors –in 1982 survival rates were too low- and this was not legally accepted. We were in front of a crucial decision: the separation of parents and survivors. The logical decision to create a new association, a survivors’ association, emerged. ‘Floga’ promised to support the new survivors association and survivors promised to support ‘Floga’.
In 2007, three survivors managed to gather signatures of 21 survivors who agreed in establishing a survivors association, compose a constitution and make the fundamental statement of establishing a national survivors’ association (within 9 months)! The ‘newborn’ named Kyttaro, a name which – apart from its literal meaning (cell) – represents also the dawn of something new. The inspiration for choosing this name for our association is our common belief that “A cell is to be blamed for everything that happened!”
Organizational structure of survivors group
As we referred above, Kyttaro is an independent organization that has strong bonds with ‘Floga’ (parents organization). We support each other’s activities and programmes and share offices and secretariat.
Leadership of Survivors
Kyttaro has its own constitution which forms the organization’s rules and structure. According to it, we have 2 categories of members: one category includes only the survivors and the other includes any person who wants to support and participate in the organization (siblings, friends, parents, organizations etc). The only difference between the members of these two categories is that survivors ONLY can elect and be elected to the Board. We have an Annual Assembly that examines last year programmes and activities, sets new goals for the next year, programmes and activities, and (every 2 years) elects the organization Board. This Board consists of 5 members and only survivors can be elected. Kyttaro is a national association. So during the same Assembly we also elect regional representatives.
The target group of Kyttaro is young adults who have had cancer in childhood or adolescence.
Aims and principles of the survivors group
Kyttaro aims to:
- support patients of childhood and adolescence cancer and their families
- inform the society about childhood and adolescence cancer
- take care of survivors (considering medical, psychosocial and any other possible aspect) and assure that they enjoy a healthy life
Means of achieving aims:
- Lobby at the government in assistance with scientific, social and any other corporation that can support us in achieving our aims Contact, communication and collaboration with other associations (national & international level)
- Organization and implementation of congresses, lectures, publications, exhibitions, gatherings and happenings beneficial for the group
- Providing support of survivors and their families
- Sub-committees working on specific matters & problems, developing new ‘approaches’ and offering solutions
- Creation and development of conditions that allow our aims to come true
Resources and infrastructure
Activities of survivors groups –what we offer
Survivors meetings take place in Athens, in the office rooms of Kyttaro which is shared with the parents organization. We meet at least once a month and we mainly discuss present matters, actions and plans. Our activities include:
- Visits at ‘House of Floga'”” on a weekly basis
- Visits at Oncology Units in paediatric hospitals (under request)
- Organising and implementing a congress for the National Day against Childhood Cancer (20.2.2010) with participation of doctors, nurses, psychologists, survivors and families
- Participating in congresses and informative events/ interviews (i.e. 8-9/11/012, 8th Seminar for Psychosocial Support of Childhood Cancer Patients and the Family)
- Supporting programmes and activities of the parents’ association (i.e. BarretsTown Camp, seasonal celebrations, special occasions, bazaars)
- Publishing a newsletter
- Organizing and holding bazaars (Easter Bazaar in 2011 & plan for Christmas Bazaar in 2012)
- Selling logo products (i.e. pens)
- Participating in ICCCPO & PanCare meetings
- Participating in Late Effects Clinic (presently paused)
new INFORMATION & FUND RAISING SECTION
- Promoting and selling Kyttaro bracelet which ‘represents’ all people who are involved in childhood and adolescence cancer ‘journey’
- RE-START a Late Effects Clinic
- ESTABLISH a physicians’ network for survivors
- SUPPORT & INFORM about Survivor’s Passport
- Website – www.tokyttaro.gr
- Facebook group
Funding and Support
Kyttaro has been acknowledged by the Greek Society of Pediatric Hematology/ Oncology and AKOS Society.