XX Swimming Tour around Formentera: Inscription full
On May 1st the registration period was opened and inscriptions are already covered.
A very special 20th anniversary is being prepared.
You can check all the news in:
Respiralia 2018 XIX Swimming Tour around Formentera report: Are you coming?
One more year, Films Suecas has done an excellent report of the Vuelta a Formentera.
You can watch it at: https://www.youtube.com/watch?v=X1P9tEZvR1M&t=6s
National Day: All with one voice claiming Orkambi and Symkevi YA
The Town Hall of Palma’s facade lit up blue “Respiralia” to commemorate the National Day of Cystic Fibrosis. Some families from the CF Association fo the Balearics and the Respiralia Foundation met to demand an agreement between the Ministry of Health and the Vertex Pharmaceuticals laboratory for the medicines Orkambi and Symkevi
The families gathered in the afternoon for the traditional campaign # PompasporlaFibrosisQuística, with the hashtags #OrkambiYA and #SymkeviYA
The media echoed our demands of Orkambi and Symkevi with interviews on RNE, IB3 Radio, Onda Cero and IB3TV and news in different print and digital media.
The Agora Portals International School students who joined the #inflaunglobo #OrkambiYa #SymkeviYA campaign also wanted to join us.
You can watch the video here:
https://www.facebook.com/respiralia/videos/631136434018315/
If you like it, share it.
Bankia “In action” collaborates with the Cystic Fibrosis Association of the Balearics
The Educataion equals Health in Cystic Fibrosis project receives the support of the Bankia solidarity network “In action”, with an aid of € 4,200.00 corresponding to the objectives achieved by the private banking offices in Mallorca during the 2nd semester of 2018, and thanks to the work of its employees. The total donation for 2018 was € 5,200.00.
Commemoration of the 30th anniversary
On Saturday, May 4, the Cystic Fibrosis Association of the Balearics commemorated its 30th anniversary at the Agora Portals School.
It was a very special day, but let the emotive summary video made by Toni Santos tell us, since a picture is worth a thousand words:
https://www.facebook.com/respiralia/videos/601643270319165/
FQBalear 2019 Award to Películas Suecas
Taking advantage of the context of the commemoration ceremony of the 30th anniversary, the Cystic Fibrosis Association of the Balearics presented the FQBalear 2019 Award to Peliculas Suecas. Edu Pampin and Carlos Molina went up to receive the award. It is, without a doubt, a well-deserved prize. Peliculas Suecas has been collaborating with the Association and the Foundation for the last 10 years in a totally altruistic way and has always been able to capture the essence of the Swimming Tour around Formentera with its reports, as well as the essence of Respiralia. Big!
You can see the delivery in this video summary of the gala:
https://www.facebook.com/respiralia/videos/601643270319165/
“Back to the future”. Spot of the 30th anniversary of the Cystic Fibrosis Association of the Balearics
Películas Suecas, meanwhile, gave us this splendid spot to commemorate the 30th anniversary. A tribute to the altruistic work of volunteering.
Don’t miss it!
https://www.youtube.com/watch?v=JUCPrPdCf90.
The Respiralia Foundation manages to be part of the Solidarity Talent Programme of the Botin Foundation.
The Respiralia Foundation has won one of the 14 places that the Botin Foundation put into competition for the #TalentoSolidario Programme. The programme lasts two years. In the first one, specialized training will be offered for the digital transformation of the Respiralia Foundation. In addition, with a financial aid from Botin Foundation, a communication professinal service will be hired. In the second year, to guarantee the definitive promotion of the communication area, we will be able to ask for financial assistance to the Botín Foundation to incorporate a professional for this task. Finally, the Respiralia Foundation and the rest of the awarded entities will benefit from the services and activities provided by the Solidarity Talent Programme.
PrevAction: Activate yourself in healthy habits
Activity carried out in the Agora Portals International School, with the students of high school, in collaboration with the companies “Tu y yo, Exclusive”, Hotelbeds and Once Foundation. It is a program in which students have to put themselves in the shoes of a person with obstruction of the lungs, with obesity, blindness and other physical limitations, through different sports work stations. The students could learn from the first hand the consequences of having bad breathing habits and poor diet, as well as accidents caused by recklessness.
Respiralia Sport Team, at the PalmaDona race.
Respiralia Sport Team gave support to the woman in the IV PalmaDona popular race last Saturday, April 13.
A dozen of Respiralia’s friends made a 4 or 8 km route supporting the equality of women in sports and in all areas of daily life.
Charity X at the income statement
A new period of the income statement is here. We encourage you to mark an X in box 106 of “Activities of Social Interest”. From the proceeds through this box, the Association and the Foundation have achieved some projects thanks to the state section of 0.7% of the IRPF.
Mark the X Solidaria. A simple gesture that costs you nothing and helps us to continue developing our projects.
2nd Prize of short stories SEPAR
If you like to write, take part in the 2nd Prize of short stories on respiratory health that is announced by this Scientific Society through SEPAR Patients. Patients, health professionals or any individual can participate, and the theme is as broad as everything that has to do with respiratory health. Go for it!
https://www.separ.es/?q=node/1476
Camino de Santiago for people with CF
This year, the Cystic Fibrosis Spanish Federation organizes again 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 in: Casa Teodora en Arzúa.
https://fibrosisquistica.org/se-prepara-el-camino-de-santiago-para-personas-con-fibrosis-quistica/
Get up to date on new medications
Visit the Facebook of the Cystic Fibrosis Spanish Federation or its website and you will know the latest in the negotiations between the Ministry of Health and the Vertex Pharmaceuticals laboratories.
