The Reina Sofía Foundation and CIEN organize the 2nd International Congress on ALS "Manolo Barrós" in Madrid

• Her Majesty Queen Sofia presided over the closing ceremony of the 2nd International Congress on ALS ‘Manolo Barrós’
• The meeting brought together experts and associations to discuss the latest scientific advances in this neurodegenerative disease

Madrid, 19 June 2025. The closing ceremony of the 2nd International Congress on ALS ‘Manolo Barrós’, held on the occasion of World Amyotrophic Lateral Sclerosis Day, took place today in Madrid under the chairmanship of Her Majesty Queen Sofía. The conference served as a platform for sharing important scientific advances on this neurodegenerative disease.

Organised by the Reina Sofia Foundation and the Centre for Research on Neurological Diseases (CIEN), part of the Carlos III Health Institute, and with the collaboration of the Ramón Areces Foundation, the Congress brought together researchers, healthcare professionals and representatives of associations of people and families affected by ALS. Among them, Senator Juan Ramón Amores, who has been living with the disease for almost a decade, and David Riaño, a researcher at the CSIC, stood out. Both shared their personal experiences with the diagnosis, the difficulties they face and their expectations regarding current scientific advances.

Throughout the meeting, various strategies for improving the clinical and social approach to ALS were discussed, in addition to promoting the exchange of knowledge and experiences between specialists and groups involved. One of the highlights was the presentation by Professor Ammar Al-Chalabi, from King's College London (United Kingdom), considered one of the leading international authorities on research into this disease. Under the title ‘What do we know about ALS?’, Al-Chalabi reviewed the current state of scientific knowledge and the main challenges posed by the disease for the medical community.

The scientific programme of the conference was structured into two main sessions. The first, focusing on advances in ALS research, was moderated by Pascual Sánchez-Juan, a researcher at the Reina Sofia Foundation and CIEN. It featured experts such as Alfredo Ramírez-Zúñiga (University of Cologne), Alberto García Redondo (12 de Octubre Hospital), Oriol Dols-Icardo (Sant Pau Hospital) and Guglielmo Foffani (HM CINAC and National Hospital for Paraplegics) presented studies on biomarkers, molecular diagnosis, immune dysfunction and new therapeutic approaches using transcranial magnetic stimulation.

The second session was dedicated to highlighting the crucial role of patients and associations in research. The presentations highlighted the work of the BT-CIEN Tissue Bank, an initiative supported by the Reina Sofia Foundation since its inception, an example of which is its current ‘Extraordinary Brains’ campaign, which encourages the donation of brain tissue to science. Researchers such as Alberto Rábano and Laura Saiz shared the achievements and lessons learned in this collaborative line of work.

Her Majesty Queen Sofía's support for neurodegenerative diseases

With this conference, the Reina Sofía Foundation reinforces its firm commitment to research into neurodegenerative diseases and improving the quality of life of those affected. In 2024, it doubled the resources allocated to its social work, reaching a total of 4,239,467 euros, of which 3,859,074 have been invested in research projects focused on Alzheimer's and other neurodegenerative diseases.

This momentum would not be possible without the personal involvement of Her Majesty Queen Sofía, who has supported this project since its inception. Her continued commitment to research into neurodegenerative diseases and social causes has been reflected, once again, in her presence at this conference, which is establishing itself as a landmark event in the international scientific calendar dedicated to ALS.