The Vall d’Hebron Research Institute (VHIR) has received a donation of €50,121 aimed at boosting research into amyotrophic lateral sclerosis (ALS), thanks to ALS, the Musical, a cultural and charitable initiative launched from Jerez de la Frontera that has brought together hundreds of people around a shared goal: raising awareness of ALS and actively contributing to advances in research.

Created and directed by Jesús Gayoso Núñez, the musical portrays the life of a person living with ALS from the moment of diagnosis, depicting each and every stage that patients and their loved ones are forced to go through. Despite the pain and challenges posed by the disease, the production conveys a message of hope. Beyond the funds raised, the performance seeks to demonstrate that local initiatives like this one can play a meaningful role in the fight against such a devastating illness.

A tribute that becomes a collective cause

Juan Carlos Garnés, a pharmacist and musician, was diagnosed with ALS in 2024. In a short period of time, the disease has progressed rapidly and he currently requires full-time care. Known for his social commitment and for viewing music as a tool for transmitting values and fostering peace, it was Garnés himself who asked that this tribute take the form of a charitable initiative.

“At first we wanted to organise a personal tribute, but he insisted that it should serve to help other people with ALS,” explains Javier Gómez Vallecillo, president of the Ensemble Cantabile Xerez association, through which the funds were raised and donated. “From there, everything grew almost uncontrollably.”

Choosing Vall d’Hebron as the recipient of the donation was a clear decision for the project’s promoters, who regard the centre as a benchmark in biomedical research, both for its scientific excellence and for its transparency and rigour in project management.

ALS, the Musical was performed at the Villamarta Theatre in Jerez, attracting an audience of nearly 1,100 people and virtually filling the venue. The event was complemented by a charity gala dinner attended by almost 500 guests, which also became a major source of fundraising.

Around 140 musicians, singers and performers took part on stage, all of them entirely on a voluntary basis. The project also benefited from the collaboration of a large number of sponsors, organisations and partners, as well as the presence of institutional representatives from the region.

“The response has been extraordinary, both from the audience and from collaborators,” says Javier Gómez Vallecillo. “It has shown just how willing society is to get involved when a disease is given a human face and a clear, honest cause is presented.”

Culture and music to raise awareness of ALS

Beyond the financial contribution, the project’s promoters emphasise the value of culture as a tool for social awareness. According to the association’s president, “music allows emotions to be conveyed and empathy to be generated. It is a gentle way of addressing a very harsh reality and of expressing a profound call to action regarding serious diseases such as ALS.”

In his view, initiatives like this help open up spaces for reflection on prevention, the need for more research, and the importance of allocating resources where they can truly make a difference. “Talking about a disease in abstract terms is not the same as when it affects someone you love. Music helps create that connection,” he adds.

The donation will be allocated to research led by Dr Raúl Juntas, Head of the Neuromuscular Diseases Unit at Vall d’Hebron University Hospital and leader of the Peripheral Nervous System research group at VHIR.

Dr Juntas highlights the importance of such solidarity-driven initiatives: “Awareness is essential to give visibility to the disease and its impact. Patients require numerous resources, and greater social awareness helps generate pressure to promote policies that improve their care.”

The funds raised will support research projects aimed at identifying new biomarkers for ALS. The goal is to gain a better understanding of the main mechanisms driving the disease in each patient, anticipate its progression and assess responses to different treatments, paving the way towards more personalised medicine.

From the musical’s organising team, the message to people affected by ALS is clear and unequivocal: they are not alone. “Society as a whole may not be able to make grand gestures, but it must do everything within its reach. And making the disease visible is essential,” concludes Gómez Vallecillo.

The ALS, the Musical project does not end with this donation. Plans are already underway to produce a feature film, as well as to stage further performances of the musical, with the aim of continuing to expand the initiative’s impact and keep awareness of ALS alive.