WHAT IS ALS?
Amyotrophic Lateral Sclerosis (ALS) is a fatal motor neuron disease, or the nerve cells of the brain and spinal cord that transmit the commands to the muscles. Its name signifies: hardening (Sclerosis) of the lateral portion of the spinal cord (Lateral) and a weakening of the muscles (Atrophy).
ALS causes the motor neurons to die prematurely, provoking the person struck to experience a progressive weakening of the muscles which leads to paralysis.
Generally, ALS strikes a person in adulthood, of either sex, between the ages of 40 and 70 years. Each day in Italy, on average there are three new cases of ALS detected per 100,000 inhabitants and there are approximately 5,000 inhabitants inflicted.
Currently, there is still no cure for ALS and its causes are unknown, but together it is possible to help patients and their families affront it and to work to promote scientific research.
WHO ARE WE?
Since 1983, the year of its establishment, the AISLA ONLUS (Italian Association for Amyotrophic Lateral Sclerosis, with headquarters in Novara and offices in various regions of Italy) has been a point of reference for patients and their families.The Association intends to exclusively pursue the objective of charitable utility and solidarity with activities of interest in the sectors of: healthcare assistance, social and public health; education; scientific research.
The fundamental objectives of the Association are:
promote and/or sustain including in collaboration with Public and/or private Institutions, scientific research activities and studies to deepen the scientific awareness about the models and the intervention techniques in the environment of ALS;
promote and/or organize professional training courses for healthcare and social assistance personnel that work in the area of ALS;
inform the patients, their families and those that are treating them about the disease, possible cures and assistance;
promote the presence of the Association within the territory of reference in order to construct local representatives among the members that are near to the patients and to favour the creation of support groups for their families;
promote and/or contribute to the collection and elaboration of data regarding the epidemiology on a regional, national and international basis in collaboration with the appropriate healthcare Institutions;
adhere to national and international organizations that are associated with ALS in order to achieve the social objectives;
promote the gathering of funds, receive and eventually enlarge contributions and donations, even characteristic, and conclude all of the operations that are necessary and useful for the pursuit of the statutory goals.
In 2003, for the purpose of further sustaining the patients and families and supporting the assistance personnel, we opened, at the national headquarters in Novara, the "Centre for listening and consultancy on ALS" through which it is possible to contact by telephone some experts (neurologist, psychologists, physiatrist and communication specialists) regarding all of the problems derived from the disease.
In 2006, the Scientific Ethics Committee was formed for the purpose of guaranteeing maximum transparency in the evaluation of research projects, both basic and clinical, on the disease and for specific projects.
The technical evaluation is entrusted to international Reviewers with evaluation performed both at a distance as well as in study-sessions.
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