Runner covers Spain to raise awareness

A long-distance bike ride is easy to file under “human-interest story” and move on. But this one is really about what happens when a disease is so rare that most people — including plenty of doctors — may never encounter it. Alberto Vallés, a cyclist from Muskiz in the Basque Country, spent April 25 to May 10 crossing Spain to make that invisibility harder to ignore. His cause was Nicolaides-Baraitser syndrome, a genetic disorder with just 23 diagnosed children in Spain. ### Who is Alberto Vallés? Vallés is a Vizcayan cyclist known as “Il Diavolo” de Muskiz, and this wasn’t some random endurance stunt. He has spent years doing solidarity challenges, but this ride carried extra weight because he framed it as his 50th and final route-based fundraiser. He has said the organizing stress has become harder to handle since his own 2022 diagnosis with adrenal insufficiency, a condition that leaves his body unable to produce cortisol normally and has led to a recognized 46% disability rating. (europapress.es) ### What exactly did he do? He set off from Gelida, near Barcelona, on April 25 and aimed to finish in Oviedo on May 10 after looping through much of Spain. Early coverage described the challenge as roughly 2,000 kilometers, but later stops put the full route at more than 2,400 kilometers by the time he reached Asturias. That gap matters because it shows this was not a symbolic jog with a photo op at the end — it became a real cross-country tour built around family visits. (europapress.es) ### Why this disease? Nicolaides-Baraitser syndrome is a very rare genetic condition usually recognized in childhood. The core issue here is scale — there are only 23 diagnosed children in Spain, which means families are dealing with the usual medical and care burdens without the visibility that larger patient groups can generate. In Andalucía alone, campaign organizers highlighted five diagnosed minors, with three in Almería, which helps explain why local stops became such a big part of the ride. (europapress.es) ### Why visit families instead of just racing? Because awareness for a rare disease usually fails at the local level first. If a rider simply posts mileage online, the story stays abstract. Vallés built the route around towns connected to affected children, so the campaign could turn into school events, town-hall receptions, and face-to-face meetings with parents. Basically, he was converting kilometers into attention — one municipality at a time. (europapress.es) ### What happened on the route? One of the clearest examples came in Almería on May 2, where the mayor received Vallés alongside families, the syndrome association’s president Sandra Carballo, and the Poco Frecuentes foundation. That kind of stop shows how these campaigns work in practice: not as one giant national moment, but as a chain of smaller public moments that give families a platform they usually do not get. (europapress.es) ### Was this only about awareness? No — it was also about money and network-building. The syndrome association promoted donations through Bizum, and pro cyclist Mikel Landa contributed a signed jersey to be raffled among supporters following the association online. That mix of fundraising and visibility is pretty typical in rare-disease advocacy, because families often need both public recognition and practical resources at the same time. (europapress.es) ### Why does the finish in Oviedo matter? Oviedo has already become a visible place for rare-disease advocacy in Spain. The city hosted major events around rare diseases in 2025, and local schools have previously organized runs specifically for Nicolaides-Baraitser syndrome. So ending there gave the ride a kind of natural landing point — not just a finish line, but a city where the issue already had some public traction. (europapress.es) ### Bottom line The ride matters because rare diseases have an attention problem before they have anything else. Vallés used a bicycle, a long route, and his own body to force that attention into public view. When only 23 children in a whole country are known to have a condition, visibility is not a side issue — it is the starting point for everything that follows. (europapress.es) (lne.es)