World ALS Day sparks awareness events, research advances and policy push in Spain

On 21 June the International ALS Day marked a surge of activity across Europe and Latin America. In Spain the disease affects about 4 000‑4 500 people, with roughly three new diagnoses and a similar number of deaths each day; the Spanish Neurology Society projects a 40 % rise in cases across Europe over the next 25 years and notes an average care cost of over €50 000 per patient per year.

Major awareness initiatives included a charity football match in Cáceres organised by the Asociación ELA Extremadura and the Fundación Eurocaja Rural, a green illumination of Madrid’s Real Casa de Correos, a solidarity walk in Brasília’s Parque da Cidade, and a gala concert in Buenos Aires hosted by former senator Esteban Bullrich’s foundation. Patient groups also used the day to demand uniform implementation of the Spanish “Ley ELA”, highlighting regional disparities in support.

Research milestones were highlighted. The SEED‑ALS consortium, funded with €3.9 million, has recruited 628 patients and is creating a national multi‑omics database. In the United States, a brain‑computer interface implanted in a patient with ALS enabled continuous home communication and work for almost two years, recording more than 183 000 sentences with 92 % user‑rated accuracy.

Together, these events underscore growing public engagement, escalating economic challenges, and accelerating scientific efforts aimed at improving diagnosis, care and eventual therapies for ALS.