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The Barceló Foundation and Ela Balears Association celebrates the World Day Against ALS, celebrated last Sunday 21st of June, to make the disease visible and improve the quality of life of those affected.
Amyotrophic Lateral Sclerosis (ALS) is a disease of the central nervous system, characterized by a progressive degeneration of motor neurons, in other word the major muscles of the human body. It threatens autonomy, oral communication, swallowing and breathing. Nowadays there are 4.000 diagnosed cases in Spain and in the Balearic Islands there are 80 people affected.
To make this disease visible on the islands and to improve the quality of life of all those affected in 2018 was born the Ela Balears Association, with Cati Rigo as the president. They joined this year our subsidy programme in Mallorca. With a grant of 7.422.50 euros, the Barceló Foundation finances the program “Communication System in ALS 2020”, through which communicators are provided to patients on the islands who have lost the ability to communicate verbally or through signs.
Lydia has 43 years old, lives in Ibiza and is one of the beneficiaries of the project. She was diagnosed with ALS only 13 months ago, but the disease has progressed so quickly that she has already lost the mobility of her hands and speech, due to a recent tracheotomy. In this way, her only way to connect to the world around is through a communicator, which allows her to check their whatsapps, watch Netflix series and, especially, relate to her one and a half year old daughter. Without it, she assures that her life would be a disaster and a daily impotence.
On the occasion of the World Day against ALS, which taked place this last Sunday 21st of June, the ALS Balears Association prepared 3 solidarity initiatives. First of all a multidisciplinary conference on communication in ALS, which had been held telematically through the ZOOM platform due COVID19. Secondly an advertising campaign entitled #Welapop (welapop.com) through which people affected by ALS explained how they get rid of their personal belongings in order to pay their care (it is estimated that a person with ALS must afford an average annual cost of 35.000-40.000 euros), and thus raise awareness about their situation. Finally, on Sunday took place the campaign #luzporlaela through which the Association asked all the buildings and monuments in Spain to illuminate their fbuildings with the color green hope to support those suffering from ALS. Last year more than 300 monuments in 200 municipalities across the country joined the initiative.