BOOK IN YOUR AGENDA…
From April 15 to 29:
Registration at the XX Swimming Tour around Formentera for people with CF. Rest: May 1. More information in www.respiralia.org
National Day of Cystic Fibrosis. #OrkambiYA and #SymkeviYA. Activities to be confirmed.
May 4, at 6:00 pm:
Act of celebration of the 30th anniversary, at the Agora Portals School. Save the date and confirm assistance by email firstname.lastname@example.org
New Board of Directors of the Cystic Fibrosis Association of the Balearics
On Saturday, March 9, the Ordinary General Assembly of the Association took place, in which the 2018 activities and annual accounting, action plan and budgets for 2019 of the entity were approved unanimously. In addition, in a second assembly, an extraordinary one, the mission, vision, values and quality policy of the entity, the bylaws and the regulations of the internal regime were approved, as well as the ethical code and the equality plan.
Finally, the new Board of Directors was elected, which is constituted in this way:
Paz Arizti, President; Ana Amate, Vicepresident; Carlota Saura, Secretary; Ketty Ruiz, Vocal for Mallorca; Peri Gardés, Vocal for Menorca; Javi Roig, Vocal for Ibiza.
The new Board thanked the outgoing Board for all the work done during these years.
Cystic Fibrosis at the Parliament: #OrkambiYA y #SymkeviYA
After a meeting with several representatives of different political parties in the Balearic Parliament (Olga Ballester of Ciudadanos, Chelo Huertas of the Mixed Group and Juan Manuel Lafuente of the Popular Party) we managed to talk about Cystic Fibrosis in the Parlament. Citizens took to the Plenary of March 19 a parliamentary question regarding Cystic Fibrosis and the acquisition of new drugs. A couple of days later, Canal4TV echoed these demands of the Balearic group of Cystic Fibrosis with an interview with our new president, Paz Arizti.
Annual Gala of En Acción Bankia
On Wednesday, March 27, @enaccionbankia organized a gala with all the beneficiaries of its Charity Network project. Carlota Saura, representing the Cystic Fibrosis Association of the Balearics, and Carlos Fernández, as representative of the entity and promoter of our project “Educate is Health in Cystic Fibrosis” in Bankia, traveled from Palma.
@radio_roncalli presented the gala live.
Families from Menorca collaborate with the Èpic Camí de Cavalls 360
On Sunday, March 10, a new edition of the Èpic Camí de Cavalls 360 race in Menorca was held. Several families of our Association collaborated as volunteers of provisioning to give visibility to Cystic Fibrosis. Thanks to Pili, Palmira and their families and friends for helping us to raise awareness in society.
Respiralia Sport Team: Fornalutx-Soller
Twenty people with CF, family and friends made the Fornalutx-Sóller excursion. The day was developed under a covered sky and threatening rain, but in a festive and relaxed atmosphere. Our team successfully made the round trip, to finally enjoy a pleasant walk through Fornalutx and a well-deserved lunch.
Respiralia Challenge: Juan José Moreno makes summit in Kilimanjaro
Juan José Moreno achieves the challenge of climbing Kilimanjaro for his great friend Andrés García Herrera. Once at the summit, Juanjo unfolded the banner of the # DesafíoRespiralia to publicize Cystic Fibrosis. Congratulations Juanjo and thank you very much!
Videos of the interviews of the 2018 Swimming Tour around Formentera
If you want to see the first interviews that Irene Junquera, our guest of honor in the 2018 Swimming Tour, did to some of the participants, enter our FB.
Interview to Othman Ktiri, President of OK Rent a Car Spain Group: https://www.facebook.com/respiralia/videos/2103205173097863/
Interview to David Asín, General Director of Homecare Linde at Linde Healthcare: https://www.facebook.com/respiralia/videos/635989663507380/
SPANISH CF FEDERATION NEWS
This year the CF Spanish Federation returns to organize the Camino de Santiago for people with Cystic Fibrosis during the week of August 26 to August 31, 2019.
Only people over 18 with CF and 2 maximum companions can attend. The places are limited to 25 people and a strict order of registration will be followed.
The itinerary will start on the Camino de la costa to end with the French Way. The accommodation will be at the Casa Teodora hotel in Arzúa.
You will find all the information here: https://fibrosisquistica.org/se-prepara-el-camino-de-santiago-para-personas-con-fibrosis-quistica/