SANTA CRUZ DE TENERIFE, June 21 (EUROPA PRESS) –
The Cabildo de Tenerife and the TeidELA association have agreed to strengthen cooperation to improve the quality of life of people suffering from Amyotrophic Lateral Sclerosis (ALS) and that of their caregivers.
Coinciding with the commemoration this Tuesday of the ‘World Day for the Fight against ALS’, the Minister of Social Action, Marián Franquet, and the president of TeidELA, Marcelino Martín, have participated in an act to give visibility to this neurodegenerative and chronic disease It affects some 3,717 people in Spain, according to data from the latest Luzon Foundation Observatory.
The Canary Islands, with 306 diagnosed patients, is at the head of the autonomous communities with the most cases per number of inhabitants.
Together with them, the neurologist from the University Hospital of the Canary Islands (HUC) Helena Pérez, and the psychologist Gemma Roquerías, from the program for Comprehensive Care for People with Advanced Diseases, who will report and present their experience with the care of people who suffer from this disease .
Marián Franquet highlighted the important role played by entities such as TeidELA, which since this year has formed part of the Insular Ring of Social Policies, “the main instrument that the Cabildo de Tenerife has to be able to bring resources closer to the people who need them, which are the sick people and their families”, through which an annual aid of 25,000 euros has been granted to the association.
“Today is an important day to publicize, explain and raise awareness about ALS, join forces among all and request more efforts for research so that people who suffer from this disease, one of the cruelest that exists, can cope with it. in the best way possible,” he assured in a note sent by the Cabildo.
The counselor also highlighted the actions that the Island Society for the Promotion of People with Disabilities (Sinpromi) has begun to develop, in collaboration with TeiDELA, and Fundación Luzón, to provide technical support and advice to people with ALS and their families on communication needs, through talks and workshops.
Specifically, through Sinpromi, the Cabildo offers informative talks and workshops to patients, families and professionals.
In addition, it provides material or support devices on loan to people affected by ALS, through the free service of the Information Center for Autonomous Living (CiVAT), and has designed a training program to improve the visual skills of people with ALS who will make use of eye readers.
MEET BASIC NEEDS
“The goal is to meet one of the basic needs of ALS patients, such as being able to communicate with their environment and loved ones, especially in the most advanced stages of the disease, and transmit not only what they want but also what they feel” , pointed out the insular counselor.
For his part, Marcelino Martín stressed the importance of reinforcing the support and services provided to ALS patients, a disease that is 90% random.
“From Teidela we offer ourselves to continue advancing in providing better living conditions for ALS patients and their families,” said Martín, who stressed that “a year in an ALS patient is a lifetime, ALS does not understand administrative procedures , it runs its course, it doesn’t stop, it doesn’t stabilize and it’s a disease in which time makes the difference”.
In this context, the neurologist Helena Pérez recalled that ALS is a progressive, neurodegenerative disease that has no curative treatment, although it does, and highlighted the need to create ALS units in hospitals to coordinate multidisciplinary care with neurologists, pulmonologists, nutritionist, rehabilitators, speech therapy, occupational therapy, physiotherapy, alternative communication system, psychology, primary care and palliative care.
The psychologist Gemma Roqueíras highlighted “the courage of people with ALS and their families to face and adapt to so many changes and so many losses in a very short time” and emphasized the importance of offering them a support service to attend to their psychological needs
CAMPAIGN AGAINST ALS
To commemorate ‘World ALS Day’, the Tenerife association has created a campaign, under the slogan ‘Everyone against ALS’ to give greater visibility to ALS patients in the Canary Islands so that, together, they can transform their reality.
Personalities from the sports, cultural and journalistic fields, such as the swimmer Michelle Alonso, the Tenerife Sports Club footballer Aitor Sanz, the Abubukaka company and the Canarian Television news presenter Pilar Rumeu, have joined in selflessly collaborating with this initiative .
Since its foundation in 2021, TeidELA has been working on the search for solutions and responses from the health, socio-care, research and regulatory fields to this degenerative disease.
Made up of people from various professional fields, who combine their knowledge and efforts in favor of the fight against ALS in the Canary Islands, this non-profit association arises from the effort and commitment of Cati Martín, a teacher from Tenerife of Early Childhood and Primary diagnosed with ALS.
The project is aimed at providing comprehensive care to ALS patients and their families, offering information on available resources and services, as well as carrying out awareness campaigns, raising awareness of the disease and collaborating with other entities of similar purposes to join forces and promote research on the disease.
On the occasion of the commemoration of the ‘World Day for the Fight against ALS’, the Cabildo de Tenerife will illuminate the facade of the Insular Palace in green tonight, thus joining the campaign ‘Luz por la ELA’ (#LuzPorLaELA) promoted since 2019 and in which monuments and emblematic buildings from different cities participate.
