21 june: Amyotrohphic Lateral Sclerosis (ALS) Awareness Day

ALS Day

Last 21 June, Amyotrophic Lateral Sclerosis Awareness Day was celebrated worldwide. This day is promoted by different patient associations with a single purpose: to raise awareness of the disease and demand more research.

Amyotrophic Lateral Sclerosis is a degenerative disease that progressively affects the upper and lower motor neurons, leading to muscle weakness. The majority of cases are sporadic, but the number of cases with a family inheritance pattern is slowly increasing.

In Spain, ALS is diagnosed in approximately 900 people each year, and a similar number of people die because of it. This disease causes patients to eventually require home care due to the progressive paralysis they suffer.

The Spanish Association for Amyotrophic Lateral Sclerosis (Asociación Española de Esclerosis Lateral Amiotrófica) used the ALS world week (15-21 June) to make a petition, in which they demanded that patients have a specialized caretaker able to cover their needs.

Last 31 May, the journal Nature Medicine published that a new form of childhood-onset ALS had been discovered. In this case, the disease was found to appear in young patients and progress at a much slower rate. After the performed study, a correlation between the SPTLC1 gene and the disease was established. This gene is involved in the production of sphingolipids, a type of fat.

1. No ALS patient without a specialized caretaker [Internet]. Asociación Española de Esclerosis Lateral Amiotrófica. Available from: https://adelaweb.org/ningun-enfermo-de-ela-sin-un-cuidador-especializado/

2. Mohassel P, Donkervoort S, Lone MA, Nalls M, Gable K, Gupta SD, et al. Childhood amyotrophic lateral sclerosis caused by excess sphingolipid synthesis. Nat Med. 2021;