The Valencian Cystic Fibrosis Association and the Valencia Trinidad Alfonso half-marathon celebrate the world cystic fibrosis day with hope for a better treatment for the illness
The Trinidad Alfonso Valencia Half Marathon, organised by SD Correcaminos, and the Valencian Province Cystic Fibrosis Association will celebrate the world cystic fibrosis day on Tuesday 8 September 2015. The main aim is to publicise the situation of CF sufferers all over the world and to improve their quality of life in order to improve treatment inequality.
Cystic fibrosis is one of the most common serious genetic diseases with an estimated incidence of around one in every 5,000 births in Spain, while one in every 35 people are healthy carriers of the disease. It is a chronic disease with a genetic origin which affects different organs, above all the lungs and pancreas. In recent years understanding and treatment of the disease have greatly advanced, but despite this, it is still incurable.
The Valencian Province Cystic Fibrosis Association will be supported by the Trinidad Alfonso Valencia Half Marathon and will be the beneficiary of the contribution made by the Trinidad Alfonso foundation for every runner that completes the trial. Many members of the foundation will also be running the half marathon as a kilometre-by-kilometre relay as an act of solidarity: 21 people for more than 21 kilometres for a good cause.
The celebration of the world cystic fibrosis day aims to shed light on the global situation of how the disease is treated and to help to develop some minimum standards of treatment. This includes availability of the medicines, equipment, and professionals specialised in CF. The association also wants to highlight the need to approve Orkambi, a drug which is already used in the United States and improves the quality of life of sufferers of the disease, at the European level.
Social network campaign
Young people and adults with cystic fibrosis have started a social network campaign, along with the Spanish CF Federation, for the occasion of the world day for this disease. The campaign is using the hashtag #MiFuturoYaEsPosible, the same as the one used to celebrate the national day for cystic fibrosis last April.
The video used to launch the campaign shows a young girl with cystic fibrosis with handfuls of salt dropping through her fingers while repeating the slogan “My future is already possible”. The salt is a symbol of the illness because one of the symptoms of cystic fibrosis is a high salt content in sweat, and hence the salty taste of the patients’ skin. This is caused by a restriction in the chloride channel, caused by a malfunction in the CFTR protein, in people with this disease.
