These are the most outstanding news of the months of December 2018 and January 2019
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Saturday, February 9, at 5:00 p.m.
Sunday, February 10, at 09:30, excursion to the mountain of the Respiralia Sport Team: Sóller – Fornalutx. Departure from the Son Hugo car park. Approximate arrival 2:30 p.m.
To be determined between March 1 or 2, at 6:00 p.m., concert in favor of children and young people with Cystic Fibrosis in charge of the Choir Son Dameto.
Saturday, March 9, at 5:00 p.m., Ordinary General Assembly and, at 5:45 p.m., Extraordinary Assembly: Approval, if appropriate, of the 2018 report and accounts, of the 2019 plan of action and budget, as well as elections a Board of Directors and approval, if applicable, of Statutes and other relevant documentation for the operation of the Association.
Saturday March 23, mobilization in Madrid: #OrkambiYa #SymkeviYa. At 11:00 am in front of the Vertex Pharmaceuticals Laboratories and at 1:00 pm in front of the Ministry of Health. If you plan to go, contact us to organize together. Cheer up and fight for your rights!
May 4, at 18:00 hours, act of celebration of the 30th Anniversary of the Balearic Association of Cystic Fibrosis, in the auditorium of the Agora Portals International School. Save the date!
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Concert of the San José Obrero Choirs for the benefit of children and young people with CF
On December 22, the Secondary and Youth Choirs of the San José Obrero School offered a concert for the benefit of children and young people with CF from the Balearic Islands. They offered a varied repertoire with film, ecclesiastical and popular music for the delight of the audience. € 801.80 was raised and will be allocated to the “Education equals Health in Cystic Fibrosis” program. More information in: https://www.respiralia.org/concierto-solidario-a-favor-de-la-fundacion-respiralia/.
News of the XX Vuelta a Formentera swimming against Cystic Fibrosis. Dates 28, 29 and 30 of June. More information in https://www.respiralia.org/respiralia-2019-xx-vuelta-a-formentera-nadando-contra-la-fibrosis-quistica/.
Some sponsors of the Balearic Association of Cystic Fibrosis and the Respiralia Foundation
• Ministry of Social Services and Cooperation of the Balearic Government. Grant of € 13,033.98 for the project of Comprehensive Care for children and young people with Cystic Fibrosis of the Cystic Fibrosis Association of the Balearics for the years 2018 and 2019.
• 0.7% Social from Income Tax in the Balearic Islands. Subsidy of € 22,742.61 for the project of Comprehensive Care for children and young people with Cystic Fibrosis of the Balearic Association of Cystic Fibrosis for the years 2019-2020.
• Fundacion ONCE. Grant of € 7,859.00 to the project Education equals Health in Cystic Fibrosis of the Respiralia Foundation, to be carried out during the first semester of 2019.
• The Institut Mallorquí d’Afers Socials (IMAS) approves a grant of € 10,000.00 to the project Comprehensive care for children and young people with Cystic Fibrosis of Mallorca carried out in 2017 by the Cystic Fibrosis Association of the Balearics.
• Agreement with Ib-Salut, for 2018 and 2019, of € 34,560.00, for which the Association is responsible for providing training in the technique of autogenous drainage, inhalation therapy protocols and hygiene measures for children and young people with Cystic fibrosis.
• Eroski Baleares, with its “Mide Sonrisas” campaign, collaborates one more year with 14 non-profit entities of children with disabilities in the Islands. The Respiralia Foundation will receive € 3,500.00 for the program “Education equals Health in Cystic Fibrosis”.
• Arabella Golf Bendinat collaborates one more year with 12 non-profit entities with its campaign “12 Bajo Par”. The Respiralia Foundation receives € 1,400.00, which will be allocated to the program “Education equals Health in Cystic Fibrosis”.
• Iberojet Palma, with the collaboration of Obra Social “la Caixa”, helps in the dissemination of Cystic Fibrosis.
Hotelbeds volunteers, with Cystic Fibrosis
The CSR (Corporate Social Responsibility) project, subsidized by the Consell de Mallorca, which aims to strengthen the CSR of the companies in Mallorca through charitable outreach actions of Cystic Fibrosis with the help of corporate volunteering is ongoing. The second training session for the Hotelbeds volunteers has already been done and we have gone to the Rafal Nou, Lluís Vives and Montesión schools to put it into practice.
If you are an entrepreneur or you think your boss might be interested, send us an email to firstname.lastname@example.org.
This time we have not won the lottery, but we can say that luck has accompanied us, since we have had partners, collaborators and friends in the sale and distribution of our number, which has reported a donation of 3,850, € 00 Thanks to all for collaborating!
Orkambi and Simkevi situation
Two representatives of Vertex Pharmaceuticals visited our facilities and informed us of the current status of the Orkambi and Symkevi medicines. For more information, contact us and we will inform you.