Book in your agenda
• March, 9, 5 p.m.
Ordinary General Assembly (5:00 p.m.) and Extraordinary General Assembly (5:45 p.m.): Approval, if applicable, of the 2018 report and accounts, of the 2019 action plan and budget, as well as elections to the Board of Directors, and approval, if proceeds, of Statutes and other relevant documentation for the operation of the Association.
• May, 4, 6:00 p.m.
Act of celebration of the 30th anniversary, at the Agora Portals School. Save the date!
250 people attend the concert of the Choir Son Dameto in favor of the Balearic Association of Cystic Fibrosis.
The Parish of Santa Catalina Thomas was the scene of the concert that every March 1 organizes the Association to publicize the Cystic Fibrosis and to raise funds for its treatment.
The Manager of the Association spoke a few words to talk about the disease and the program Education equals Health in Cystic Fibrosis to which the funds will be allocated.
The audience could hear opera songs such as “Va pensiero”, from bands like “Edelweis”, religious music such as “Ave Verum”, habaneras like “Si escoltes bé la mar” or today’s songs like “Paraules d’amor”.
€ 1650.00 were raised, equivalent to 55 training sessions for children and young people with Cystic Fibrosis in the technique of autogenous drainage, inhaled therapy protocols, reeducation to effort and hygiene measures.
Encounter of families with CF. Towards the normalization of the disease
On February 9, a meeting of families with children with CF under 10 years of age was held at the headquarters of the Association. Paz Arizti and Ketty Ruiz conducted the meeting, in which experiences were exchanged among the attending families and doubts were resolved. We talked about the stages through which the disease is accepted and how it is important to normalize the situation as much as possible and that the whole family take the same approach to care and distribute the tasks among its members.
The “Education equals Health in Cystic Fibrosis” Program closes the VIII Encounters of people with rare diseases and disabilities in Menorca
The Cystic Fibrosis Association of the Balearics and the Respiralia Foundation have been committed since 2016 to the continuous assessment work system for the treatment of Cystic Fibrosis. On this occasion, we share this system of work in the VIII Conference on Rare Diseases and Disability in Menorca, organized by the Fundació per a Persones amb Discapacitat de Menorca.
The Communication Manager, Paz Arizti, represented our entities when explaining the project “Education equals Health in Cystic Fibrosis” to other entities related to rare diseases. It is an expert and active patient program in which people with CF are trained in the management of their disease.
Souls of solidarity: the example of María Arroyo
María Arroyo once again demonstrates her solidarity. She has recently celebrated his birthday in a special way. He did not want gifts, but the guests put the money they wanted to buy something in an urn. In total, she raised and donated € 518.00 to the Respiralia Foundation. This money will go to the program “Education equals Health in Cystic Fibrosis”. Thank you very much, María: You are an example for all!
Barceló Foundation continues to support the “Education equals Health in Cystic Fibrosis” Program
The Barceló Foundation approves a new grant to the “Education equals Health in Cystic Fibrosis” Program of the Respiralia Foundation for an amount of € 11,294.12, for the period July 2018 – June 2019.
Bankia “in accion” donates € 4,200.00 to the Balearic Association of Cystic Fibrosis
This aid is closely linked to the objectives achieved by Bankia’s offices in Mallorca during the second half of 2018. The money will go to the Education equals Health in Cystic Fibrosis program.
Meeting with Ciudadanos Party
Carlos Pons and Paz Arizti met this month with the deputy of Ciudadanos Party, Olga Ballester, to explain the situation of the new medicines of Cystic Fibrosis and raise awareness about the importance of not playing with the lives of these people.
The Association will shortly meet with members of other political parties to request #OrkambiYA and #SymkeviYA.
SPANISH CF FEDERATION NEWS
The Senate approves unanimously the motion that includes several measures in relation to Cystic Fibrosis
During the plenary session of the Senate on February 20, the Popular Group presented a motion, finally approved unanimously, in which it urged the Government to adopt certain measures in relation to Cystic Fibrosis, including access to new treatments for the disease.
The plenary session was attended by the Executive Commission of the Cystic Fibrosis Spanish Federation, as well as representatives of the different associations of Cystic Fibrosis throughout Spain and the Canary Oliver Mayor Foundation.
The mobilization in Madrid of March 23 is suspended. #OrkambiYA and #SymkeviYA