Marco died at the age of 20 from the neurodegenerative disease associated with amyotrophic lateral sclerosis (ALS). Your mother, Nuria Rosas, says she turned pain into motivation to create a movement that showed the evil her son suffered. It was established as a fund for Desafío ELA, an organization that leads research and supports families affected by this disease. On the 27th and 28th of November, a beneficial donation was made in collaboration with Ritchie Bros. to donate assignments and commissions created by the Research Laboratory at ELA of the i+12 Institute of the 12th of October Hospital in Madrid.
The event will be held in Ocaña and Tarragona, but people can participate online from anywhere. “The submarine will start with heavy machinery donated by companies and individuals, such as cranes, backhoes, etc. The total amount will be used to work on the donated pieces for research. One piece can translate into thousands of euros for the laboratory,” explains Desafío ELA director. Those interested in participating can do so via www.rbauction.es. The subpack also includes Real Madrid, Real Betis and Atletico Madrid jerseys, signed by players from each club.
Rosas claims that the only way to change the future of those currently living with ALS is to advance research. Therefore, as Challenge ELA Director, she promotes activities focused on obtaining resources to fund programs that seek to improve knowledge about disease. He comments: “Behind every scientific advance there are stories like Marco’s, stories that should not be repeated.” All funds raised – obtained from solidarity events, crowdfunding campaigns and donations – were allocated to the ELA Research Laboratory of the i+12 Institute at the 12th of October Hospital, led by Doctor Alberto García. “It is one of the reference teams in Spain, specializing in biomarkers, genetic bases and new therapeutic pathways,” says the director of Desafío ALS.
The October 12 research team appreciates the contribution of the ELA Challenge. The money donated was used to fund a project that is trying to deepen personalized medicine in the treatment of amyotrophic lateral sclerosis. Garcia explains that the disease is not the same for all people, so that each patient is “a different world.” Through this project, they seek to group patients when they share characteristics to apply a specific treatment to each group.
In the laboratory there are two lines of investigation. The first focuses on studying the causes of the disease through genetic studies performed on all patients. The second is dedicated to the study of biomarkers and consists of finding molecules that allow more accurate diagnosis and prognosis.
About 4,000 people suffer from ALS in Spain. October 12 Hospital houses 250 patients and has one of the largest amyotrophic lateral sclerosis care units in the country. “We are at the forefront of the world with the ALS law so that all patients can get help and treatment,” highlights García, recognizing that “the importance of care for ALS patients is that it is multidisciplinary, robust and knowledgeable about the disease.” Nuria Rosas points out that she still suffers from “an unknown disease, incurable and with a devastating impact,” which she experienced through her own experience as a child. Therefore, he insists on the need to continue the investigation: “Work is essential to reduce the time to diagnosis, understand the progression of the disease and identify future treatment opportunities.”