Madrid, June 19, 2025. The closing ceremony of the 2nd International Congress on ALS “Manolo Barrós”, held to mark World ALS Day, took place today in Madrid, presided over by Her Majesty Queen Sofía. The event served to share important scientific advances in the understanding and treatment of this neurodegenerative disease.
Organized by the Reina Sofía Foundation and the CIEN (Center for Research on Neurological Diseases), part of the Carlos III Health Institute, the congress brought together researchers, healthcare professionals, and representatives of patient and family associations affected by ALS. A highlight of the event was the speech by Senator Juan Ramón Amores, who has been living with ALS for nearly a decade and shared his personal experience with the diagnosis, as well as his hopes in light of current scientific progress.
Throughout the congress, various strategies were discussed to improve both clinical and social approaches to ALS, promoting the exchange of knowledge and experiences among specialists and stakeholders. One of the most notable moments was the keynote lecture by Professor Ammar Al-Chalabi from King’s College London (UK), a leading international figure in ALS research. In his talk titled “What do we know about ALS?”, Al-Chalabi reviewed the current state of scientific knowledge and the main challenges the disease poses to the medical community.
The congress’s scientific program was structured into two main sessions. The first, focused on research advances in ALS, was chaired by Pascual Sánchez-Juan, researcher at CIEN and the Reina Sofía Foundation. Experts such as Alfredo Ramírez-Zúñiga (University of Cologne), Alberto García Redondo (Hospital 12 de Octubre), Oriol Dols-Icardo (Hospital Sant Pau), and Guglielmo Foffani (HM CINAC and National Hospital for Paraplegics) presented studies on biomarkers, molecular diagnostics, immune dysfunction, and new therapeutic approaches using transcranial magnetic stimulation.
The second session highlighted the crucial role of patients in research, with special attention to the work of the BT-CIEN Brain Tissue Bank, an initiative supported by the Queen Sofía Foundation. Researchers including Alberto Rábano and Laura Saiz shared the achievements and lessons learned from this collaborative research model.
Her Majesty Queen Sofía’s Support for Neurodegenerative Diseases
Through this congress, the Reina Sofía Foundation reinforces its strong commitment to the research of neurodegenerative diseases and the improvement of the quality of life of those affected. In 2024, the Foundation doubled its resources for social initiatives, reaching a total of €4,239,467, of which €3,859,074 were invested in research projects focused on Alzheimer’s and other neurodegenerative disorders. This commitment to science is complemented by a robust social action strategy, with over €300,000 dedicated to supporting vulnerable groups.
This effort would not be possible without the personal involvement of Her Majesty Queen Sofía, who has supported the project from the outset. Her ongoing commitment to neurodegenerative disease research and social causes was once again demonstrated by her presence at this congress, which is becoming an international benchmark in the scientific calendar dedicated to ALS.