650 km in 6.5 days: The ultra-distance challenge that saves lives
Pyrenees and mountains 📩
Here 🔥Hodei and Ilargi are two brothers who live in Aramendía, Navarra, and they are both racing against time. Not because they are fast —although they are— but because the Batten disease CLN6 It advances relentlessly into their bodies. There is no cure. There is hope: an international clinical trial of gene therapy that could change their future. The only problem: it needs two million dollars to get off the ground.
Fernando Magaldi, an 61-year-old ultra-runner from Asturias, decided that that money would not come without a fight. Between September 14 and 20, he will run 650 kilometers non-stop, from Santiago de Compostela to Ganuza, accompanied by Joseba, the father of Hodei and Ilargi. One hundred kilometers per day. Six and a half days. Less than an hour of sleep per night. An act of resistance that is also an act of love.
The disease that no one sees: Batten CLN6
Batten CLN6 is one of those names that almost no one knows. It is ultra-rare, genetic, neurodegenerative. It affects only 1-4 people per 100,000 births in Europe. But for the families that suffer from it, those statistics don’t matter. What matters is what comes next.
Children with Batten are born completely normal. They grow up laughing, running, learning like any other child. And then, without warning, the disease begins. Vision fades away until total blindness. Muscles lose strength and control, accompanied by epileptic seizures that never cease. Voice goes away. Words disappear. Cognitive abilities deteriorate into dementia. Life shuts down in childhood or adolescence. Watching your children gradually lose everything they have learned is the greatest pain a parent can face. But in this story there is no room for surrender.
The piece of the puzzle
Currently there is no cure. But science has something that Hodei and Ilargi’s parents consider the closest thing to a miracle: an international clinical trial of gene therapy. The CureBatten Foundation is coordinating the project from the United States. Families and associations from all over the world have joined together in a global alliance. The total cost is astronomical: two million dollars to launch the clinical trial that could change the future of Hodei, Ilargi and many other children on the planet.
That’s an impossible figure for a single family. But from the Hodeilargi Association, created by the parents themselves to make the disease more visible and raise funds, they decided something: we want to contribute our piece to the puzzle. And to do that, they put on their sneakers.
Fernando Magaldi heard the call. Three years ago, he founded «Corriendo por los que no pueden», a non-profit association based on a simple premise: what is not seen, is not investigated. Since then, he has turned his body into a platform for visibility. In 2024, he covered 1,010 kilometers in La Rioja in 16 days. In 2025, he covered 2,330 kilometers in five autonomous communities in 37 consecutive days. Each challenge is more ambitious than the previous one. Each generates conversation, media, and money.
But nothing like what is coming now. Nothing like what Fernando plans to do in September.
What does 650 kilometers in six days mean?
To understand the magnitude of this challenge, you have to understand the numbers. Fernando is going to run a an average of 100 kilometers per day for 6.5 consecutive days. It will begin at 00:00 of September 14 in Santiago de Compostela and will cross the finish line at 13:00 on September 20 in Ganuza, 50 kilometers from the home of Hodei and Ilargi. It is not a coincidence. It is symbolic and contrary to the Way of Saint James: instead of arriving after weeks, he sets out in search of a cause. His destination is not spiritual. It is precisely real. Fernando reverses the symbolism. Instead of seeking spiritual answers, he sets out in search of scientific ones. His destination is not the tomb of an apostle. It is the home of two brothers in need of research.
For someone who understands ultra-distance running, these numbers are brutal. A typical ultramarathon runner runs between 50 and 80 kilometers per day in multi-week challenges. Fernando has run 54-63 kilometers per day for 37 consecutive days and has survived. But this is approximately twice the intensity over half the time.
During those 156 hours of racing, Fernando will sleep less than an hour a day. His body will burn between 8,000 and 12,000 calories each day. He will need liters of water and electrolytes every hour to prevent dehydration. The muscles will deteriorate without the ability to recover. The brain will operate in crisis mode: hallucinations, mental confusion, panic are normal symptoms in ultra-endurance athletes of this intensity. The feet will suffer devastating blisters. The stomach will lose its ability to process food. The tendons will be on the verge of failure.
For comparison: the typical French Camino de Santiago is 780 kilometers in 33 stages, which requires walking approximately 24 kilometers per day for 33 days. Fernando will cover almost the same distance running in 6.5 days. Literally, he will walk what others walk in five weeks in just one week.
But Fernando doesn’t run alone. Joseba, the father of Hodei and Ilargi, will accompany him throughout the entire race. It’s not just an abstract support. It’s a family running alongside the athlete against the clock.
The collection: goal and destination
The Hodeilargi Association has set a symbolic goal: 65,000 euros. One for every kilometer that Fernando runs. All the funds raised will go directly to the research of Batten CLN6, primarily to the CureBatten Foundation to fund the international gene therapy trial. It is the piece of the puzzle of Hodeilargi in a global alliance that pursues a total of two million dollars.
The campaign lives on GoFundMe under the title «The dream of Hodei and Ilargi: 650 km on foot against Batten CLN6». It is the main fundraising channel. There, every donation is one more step on the path to cure. Ten euros give hope and momentum. Fifty euros fund the laboratory work necessary for the launch of the trial. One hundred euros or more make you a sponsor of a full kilometer of the challenge, transforming you into a key driver to accelerate the arrival of therapy to patients.
But fundraising isn’t limited to GoFundMe. There are multiple channels. Some people are running their own miles on Strava, within the «Asociación Hodeilargi» club, adding up the numbers globally. There’s also solidarity merchandise: 12-euro T-shirts sold at events and online. There are local races and events where money is raised. There are direct donations to Hodeilargi.org for those in need of a tax certificate.
It's a movement. It's not a man running alone. It's a community running alongside him.
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