The San Bartolomé City Council commemorated this Tuesday the World Day against Amyotrophic Lateral Sclerosis (ALS), with an event in which authorities from all over the island participated. The municipality also remembered its former mayor, Alexis Tejera, who died from the disease on November 15, 2021, at the age of 39.
The current mayor, Isidro Pérez, was accompanied by the councilors of the Corporation and municipal workers, as well as representatives of the Cabildo, all the city councils and the Molina Orosa Hospital.
In addition, the National Confederation of ALS Associations (ConELA) also participated, which was represented by Sonia Sánchez de Bernardo, also on behalf of the associations "Fundación Luzón", "TeidELA", "Dale Candela" and "ALANEM".
A representation of different entities and several NGOs, as well as neighbors who wanted to join this claim, was also present at the event. Among them was APSAL, to whom the City Council thanks for the sign language interpretation, as well as the Accessible Law Association, among other associations.
The City Council tower will remain lit all night in green, putting "light on ALS", thus showing support for patients and families. The Consistory points out that the objective of this act is "to raise awareness about this disease, join forces and demand more research, which is one of the fundamental pillars to increase the life expectancy of patients with ALS."
"We are celebrating this event today with the aim of making amyotrophic lateral sclerosis, ALS, visible. We do so from the commitment of a municipality, San Bartolomé, which has a special responsibility with this disease," said the mayor.
Pérez especially thanked the presence of Marta Sarmiento, Alexis Tejera's wife, and Yaiza Tejera, Alexis's sister. "Thank you both and the whole family, and Marta, congratulations and thank you very much for the enormous work you are doing to raise awareness about ALS, and also to Alanem, which, although it is not an ALS association, offers help and support on the island," he said.
"Thank you also to the associations that have wanted to accompany us in this event. Sonia Sánchez, we thank you for the effort you have made to be here today representing the national confederation of ALS associations of Spain. Thank you very much also to "Teidela" and "Alanem", which welcomes these patients, as well as "Dale Candela", and all the people, groups and entities that in one way or another join this event," added the mayor.
"From the municipality of San Bartolomé we want to express today our support for people affected by ALS, as well as their families, in the face of the many difficulties they must face during the course of the disease. The public administrations represented here assume the institutional obligation to facilitate measures aimed at achieving the highest possible quality of life for these people, as well as our duty to develop social awareness and visibility of ALS," concluded Isidro Pérez.
The mayor gave way to the reading of the "ConELA" manifesto, read by Sonia Sánchez de Bernardo, managing coordinator of the "Fundación Luzón", representing "ConELA" and all the entities and associations dedicated to this fight.
The Minister of Health of the Cabildo of Lanzarote, José Manuel Sosa, reiterated the need to make ALS visible, "to demand greater efforts in the field of research to find a cure for this disease", reiterating "the high average cost of care for people with ALS, which is an unaffordable problem for many families."
Sosa remembered Alexis Tejera as an example of "composure and life". "On World ALS Day, the Cabildo joins the demands of this group and their families, inspired by the principle of equality and non-discrimination of people, whatever their situation," added Sosa.
The event closed with a big round of applause, directed to the memory of Alexis Tejera and all the people who live this reality and their families.
Manifesto
"People with ALS and their families and the social entities that face ALS every day must be heard because they are the ones who really know what their real daily needs are in the neurodegenerative progression of their disease," the associations stressed in the manifesto.
"The current public system only covers a minimum part (around 10%) of the care needed by an ALS patient, so it is a responsibility that falls almost exclusively on family members, often having to give up their jobs or paying for professional help worth, at a minimum, about 35,000 euros per year. Therefore, continuous expert care twenty-four hours a day, seven days a week, is so necessary," they stressed.
Thus, among other measures, they have demanded "the streamlining of procedures for dependency to be recognized." And it is that "with a life expectancy of between 3 and 5 years from diagnosis and an average of 2.5 years to start receiving aid, bureaucratic deadlines are currently an obstacle for the person with ALS to access the benefits that correspond to them as a dependent", so they demand a "processing of the ALS Law NOW".
