The foundation talks about ALS
17 | 10 | 2024The Foundation celebrated the European Science Night with a day dedicated to the disease ALS, suffered by nearly 400 people in the Valencian Community, with no cure at the moment and a life expectancy of between 3 to 5 years.
The event was attended by professionals from the sector, as well as an ALS patient, José Jiménez, in addition to three speakers of recognised solvency in the field, such as Mónica Povedano, coordinator of the Functional Motor Neuron Unit in the Neurology Service of Bellvitge Hospital, who told how Dr. Charcot, a French neurologist, was the first to discover this disease in 1869 and “over the years it has affected not only the motor system but also behavioural dementias: the so-called frontotemporal dementia”. Povedano recommended studying the genes in patients with a family history “and if you are in the range of 50 years and older and you are male, we already know that it is a possible case of ALS”. She also spoke about “risk factors in the exposome or all those factors that may have influenced us throughout our lives that could lead us to suffer from ALS and it has been seen that intense sporting activity is also another risk factor such as that of the athlete Unzué, or environmental pollution which is also observed as an increase in cases.” For Dr. Povedano, “one of the urgencies in the treatment of this disease is that patients need to be treated in special units, diagnosed in time and know how to categorize patients.”
The Research Professor and Director of the Genomic Instability Group at the Spanish National Cancer Research Centre (CNIO), Óscar Fernández-Capetillo, spoke about the first identification of the aetiology of ALS and talked about the cleaning of certain neurons and how the search for drugs against ALS is evolving, such as the new SALSA strategy that is currently being tested and the inducer of ribophagy, which cleans diseased neurons (cleans the accumulation of ribosomal proteins in ALS patients).
To end the day, the Research Professor and Director of the Medical Chemistry and Translational Biology group at the CSIC’s Margarita Salas Biological Research Centre, Ana Martínez, explained the pharmaceutical processes until a drug reaches the pharmacy and acknowledged that it takes between 14 and 16 years with an investment of between 1,500 and 2,000 M euros. Martínez encouraged the students to dedicate themselves to research “as one of the most high-risk sports you can do”. She also spoke about Molefy, the spin-off created to try to get funding for clinical trials: “We are very hopeful – she said – that we will be successful with the preclinical phase and by the middle of next year we will start a new phase of a Spanish drug against ALS”, she emphasized.
At the opening, Javier Pocoví, from Valencia City Council, spoke about the positive care measures for ALS sufferers and the “well-made” investments and called for the support of the entire business comunity and society in general in the fight against degenerative diseases. The representative of the city council encouraged the young students who filled the hall to dedicate themselves to research.
Among the attendees was José Jiménez, an ALS sufferer, who also took part to explain first-hand the details of the disease that currently has no cure, with a life expectancy of 3 to 5 years, and with nearly 50 mutations that are diagnosed. Jiménez spoke of the hope and the daily life of the patients who, since it was first diagnosed 150 years ago, have been trying to live with ALS. Jiménez referred to the association he has created together with other ALS sufferers to “try to be the first shoulder when a person is diagnosed with this disease.”
Jiménez also referred to “dependency, disability and invalidity, as three words that seem the same but are not” and acknowledged that by needing so many social and economic resources, “they lead many ALS sufferers to consider themselves a burden, which leads them to give up wanting to live like this” he said emotionally.
Regarding the new law that includes 24-hour care, he expressed his satisfaction that it is being implemented.
The event ended with a round table discussion where the large audience was able to ask numerous questions and engage in dialogue with the professionals.