Cystic Fibrosis patients claim Unlimited Breath on this year’s World Cystic Fibrosis Day and invite us to learn more about the most common inherited disease.
World Cystic Fibrosis Day is celebrated every year on 8 September, raising awareness of the disease, which affects over 80,000 patients worldwide. In Greece, it is estimated that there are over 500,000 carriers of the disease, and every week 1 child is born suffering from Cystic Fibrosis.
Cystic fibrosis affects many organs, especially the lungs and pancreas. Patients spend 3-4 hours a day on their treatments, and severe respiratory complications can lead to lung transplantation as the only option for survival.
“World Cystic Fibrosis Day is for us a reminder of the daily battle that all patients fight, but also of the strength we have when we unite in our common fight for Breathless Breath. With 42 years of uninterrupted presence and struggle, the Panhellenic Cystic Fibrosis Association continues to stand by every patient and family with empathy, hope and collective strength. We sincerely thank all those who support us in this life journey” , says the President of the Panhellenic Cystic Fibrosis Association, Anna Spinou.
Educational campaign “Secret Mission: K.I.”
In the context of this year’s World Day, with the start of the new school year, the Association focuses on prevention, information about Cystic Fibrosis, but also on the empowerment of the younger generations, through the educational campaign “Secret Mission: cystic fibrosis “.
This is the continuation of the successful project that the Association launched in December 2023 with the creation of the first edition of the interactive children’s book “Secret Mission: the K.I.” for children with Cystic Fibrosis, aiming to improve self-management of the disease. See the 1st edition of the book: https://www.cysticfibrosis.gr/draseis/paidiko-vivlio/
The campaign is now being extended to the wider children’s audience with a comprehensive range of new actions:
- Renewed print 2nd edition and interactive eBook entitled “Secret Mission K.I.2“, with new content adapted for all children – available free of charge and on digital platforms.
- Mini-website with educational material, interactive tools, quizzes and games.
- Teachers’ handbook and training materials, designed by a dedicated scientific team.
- Training workshops for teachers and activities in schools with free distribution of the material.
“The Secret Mission K.I.2 is an educational challenge: a dynamic tool with interactive games, questions, music and instructions for teachers.
Our goal was to create a book that helps children transform worries and stubborn “no’s” into strength, meaningful relationships and that “why not?” that opens up paths where before they saw dead ends.
Guided by Kiri and Chloe, a series of missions awaken the creative imagination of every K.I. “secret agent” and lead them on a personal journey of self-discovery.
Through this journey, the Hidden Abilities that we all hide inside us unfold”, says the author & illustrator of the book, Liana Nenezaki.
The aim of the campaign is to enhance empathy, acceptance and mental empowerment of all children, turning the experience of Cystic Fibrosis into a lesson of life, solidarity and imagination.
“The Secret Mission started from the heart of the Cystic Fibrosis community. It was born out of our personal experiences, the unanswered questions of our childhood and the need to give today’s young patients what we didn’t have: a voice, understanding, hope.
As a patient who grew up with Cystic Fibrosis, I know well what it means to carry your difficulties in silence .
With this campaign, we want to inspire children, but also give them tools that will help them discover the power of “Breathless Breath”. The one that will make them discover that within them there is the resilience and courage to face any ‘mission’ that life will bring them”, says the Association’s President, Anna Spinou.
Konstantina Giannaki, Vice President of the Association & mother of 10-year-old Argyris with Cystic Fibrosis says: “It’s touching to see a child with Cystic Fibrosis read a story that’s like him, smile and tell: “This is my journey too.” Through this campaign, every child – patient or not – learns that they are not alone, that every difficulty can be a source of strength, and that acceptance starts in the classroom.” .
The Panhellenic Cystic Fibrosis Association would like to thank Platinum Sponsor Vertex Pharmaceuticals of the “Secret Mission: cystic fibrosis” Educational Campaign, as well as the original supporters Special Therapeutics, Hellenic American Union, PrintServe for their practical support in the educational and social dimension of health, giving breath and knowledge to future generations.
Stay tuned – the journey of the Secret Mission starts soon!
Provision of respiratory devices
At the same time, on the occasion of this year’s World Cystic Fibrosis Day, the Panhellenic Cystic Fibrosis Association is pleased to announce an important action to support patients throughout the country.
METLEN, with a high sense of social responsibility, offers free respirators, which will be distributed free of charge to Cystic Fibrosis patients and lung transplant patients throughout Greece through the Association:
- 56 portable individual spirometers Spirobank Smart, for remote monitoring of patients’ respiratory function
- 10 special nebulisers PARI BOY Classic, for the daily administration of inhaled drugs to children and adult patients
“Cystic Fibrosis patients need about 3-4 hours a day for our treatments and breathing devices are absolutely essential to carry them out. METLEN with its generous donation is actively standing by the side of Cystic Fibrosis patients all over Greece, who are fighting a difficult daily battle for the rest of their lives. This is a meaningful initiative with a real impact on our quality of life. An act of solidarity that gives us Unlimited Breath. We would like to thank METLEN for its valuable and substantial support to patients with Cystic Fibrosis.” , says the President of the Association, Anna Spinou.
Patients interested in receiving the respiratory devices free of charge from the Association can fill in a contact form on the Association’s website: https://www.cysticfibrosis.gr/draseis/ipostiriksi-asthenon/dorean-parochi-anapnefstikou-exoplismou/
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More about the disease and the Panhellenic Cystic Fibrosis Association:
🌐 www.cysticfibrosis.gr
📧 info@cysticfibrosis.gr
📞 2110137700
