Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease of the motor neurons in the brain and spinal cord. As these motor neurons are lost, the muscles they control become weak and then nonfunctional, thus leading to muscle weakness, disability, and eventually death. ALS is the most common form of motor neuron disease.
For the majority of cases, cause of the ALS is still not known. There are hypothesis that some individuals may be may be genetically predisposed to developing the disease but do so only after coming into contact with an environmental trigger. Although the majority of ALS cases are sporadic (i.e. no family history of the disease) about 10% of cases are familial, meaning the disease runs in the family.
About 400,000 people are affected by ALS globally and about 100,000 people die each year as a result of the disease. In Switzerland, approximately 500 to 600 people are affected by ALS. On average, it takes one and a half years from the first symptom onset to the confirmed diagnosis. ALS occurs most frequently between the ages of 50 and 70, and men seem to be slightly more often affected than women.
Worldwide, June 21st is commemorated as a ALS Awareness Day. June 21st represents a solstice – a turning point – and each year the ALS community undertakes a range of activities to express their hope that this day will be another turning point in the search for cause, treatment and cure of ALS. Motto for 2023 is “Whatever It Takes,” and the overarching goal is for ALS to be a livable disease by 2030.