Juan Carlos Unzué, winner of the Carles Capdevila award: "Don't let sick people feel alone"

BarcelonaIt's hard to find warmer people than Juan Carlos Unzué. Listening to him is a joy. His gaze and voice embrace everyone he meets, even through a small screen. With this spirit, the former goalkeeper and coach dedicates a message of gratitude on the occasion of receiving the sixth Carles Capdevila Award, a prize he is receiving this year for his extraordinary work raising awareness of amyotrophic lateral sclerosis, the dreaded and cursed ALS, a disease he has suffered from for more than five years. He is now 58.

In just a minute, the man who was Luis Enrique Martínez's first assistant during the last treble Barcelona fans have celebrated (Berlin, 2015) has more than enough to convey a personal experience, a daily and regressive struggle, that has become a collective cause. Unzué, a public figure thanks to the impact of football, has given a voice to those who don't have one. Their drive advocates for human and economic resources for people who require care to survive day to day and offers an example of dignity, hope, and human commitment that transcends the sporting arena.

"Hello. I'm Juan Carlos Unzué, one more member of the ALS patient community in our country. I want to thank the people who decided I deserved the Carles Capdevila Award, presented by the newspaper AHORA. To everyone who has a sick or elderly person around them, don't let them feel alone. One day you'll have to listen to them and offer encouragement. And another day they'll need a hug and our affection." The former player and coach, originally from Orcoyen (Navarra), preferred to express his gratitude for the award from his hometown, with a smile on his face and the image of the rocket San Fermín in the background. Although the disease has long limited his mobility and is beginning to make breathing and speaking difficult, he is able to find and pronounce the precise words to merge gratitude, a plea, and a great desire to live.

Just a few months ago, Unzué still felt strong enough to commentate on football matches on DAZN. He stopped precisely because he finds it difficult to keep up with a broadcast and articulate consecutive sentences without breathing problems. "The effort I have to make to speak continuously is enormous," he commented in an interview on Radio 4. However, he is certain that he will not have a tracheotomy—an incision in the trachea—to breathe better when the situation worsens, which clashes with his desire to leave life in 2020. "I want to be happy, to enjoy life, and I prefer to go a little earlier, but with the feeling that my life has been full until the very last day." He argued this point a few months ago on the program Unrepeatable.

The ELA law, a triumph based on activism

In recent years, as the disease progressed, she dedicated herself wholeheartedly to securing funding from institutions to cover the care hours needed by the more than 4,000 people living with ALS in Spain. The result of this tireless struggle, which in the summer of 2022 will be... filling the old Camp Nou under the pretext of a Barça - Manchester City match, At the end of 2024, the Spanish government finally revived a draft bill that had been stalled for three years to guarantee financial support for those affected by this irreversible diagnosis.

According to calculations by the Luzón Foundation, one of the most active in this fight, a patient in the advanced stages of ALS who requires constant care must pay around €114,000 annually, an excessively high figure that renders the funding provided by the Dependency Law insufficient. "We need money to stay alive and have a dignified life," argued Ilde Oliveras, an ALS patient and colleague of Unzué in demands that ultimately led to the approval of a law that today It provides up to 10,000 euros per month for the most severe cases. Training for healthcare personnel and streamlined procedures for recognizing disabilities.

The determination and agenda of a figure as prominent as Unzué have been key in placing care at the heart of the political debate. This is one of the reasons why he has been awarded the prize by the jury, which also wishes to recall that Carles Capdevila likewise wanted his illness to have a meaning beyond personal suffering, dedicating himself to praising the nursing and care professional community. That is why the prize that bears his name is dedicated alternately each year, one year to the care of people and the next to the world of education, the other great personal commitment of the founding director of ARA.

This edition of the prize has, for the first time, the support of the Official College of Nurses of Barcelona, ​​whose president, Borja Manzanares, chaired the jury that awarded the prize to Unzué.