Cycling fundraiser links Murcia and Granada
- Murcia charity Por la Sonrisa de Elenita launched a near-400km cycling challenge to Granada, with volunteer riders covering the route over two days. - The ride backs research into IRF2BPL mutation disease, with a €10-per-kilometre “sponsor a kilometre” drive funding GENyO and Murcia projects. - It matters because only 14 patients are known in Spain, leaving families to fund science and support almost alone.
A charity bike ride is the easy part to picture. The hard part is what sits behind it — families trying to fund research for a disease so rare that almost nobody has heard of it, and so small that normal funding pipelines barely notice it. That is the point of this Murcia-to-Granada challenge. A group of volunteer cyclists set off on a near-400km route to raise money and attention for children affected by an IRF2BPL gene mutation, an ultra-rare neurodegenerative condition known in Spain in just 14 patients. (murciaactualidad.com) ### What actually happened? The event was organized by the association Por la Sonrisa de Elenita together with the Suma+ collective. The format is simple but brutal — roughly 400km, split across two days, linking Murcia, Almería and Granada, with volunteer riders carr(murciaactualidad.com)more visibility than a local charity appeal would usually get. (porlasonrisadeelenita.es) ### Who is Elenita? The association takes its name from Elena Pineda, a girl from Granada with family roots in Murcia. Her case is the emotional center of the campaign. She was diagnosed after a progressive loss of motor abilities that began in 2022, and her family turned that private crisis into a public push for research, therapy support, and awareness. (murciaactualidad.com) ### What disease are they fighting? The target is a mutation in the IRF2BPL gene, linked to a condition often referred to as NEDAMSS. Basically, it is a severe neurodevelopmental and neurodegenerative disorder that can involve regression in movement, speech, and other(murciaactualidad.com)tified cases in Spain and around 150 worldwide in its 2025 update. (genyo.es) ### Why does the route end in Granada? Because Granada is not just where Elena is from — it is also one of the research hubs for this disease. GENyO has become a focal point for work on IRF2BPL-related disease, including efforts to understand the biology and identify therapeutic targets. So the ride is symbolic(genyo.es)ctually matter. (genyo.es) ### How are they raising the money? The campaign includes an “Apadrina un kilómetro” — sponsor a kilometre — drive. People can contribute from €10 per kilometre, or just donate freely. The money is meant to support scientific projects at places including the University of Murcia and GENyO, while also helping fa(genyo.es)families usually need support now and research later — both at the same time. (murciaactualidad.com) ### Why is this so dependent on families? Because rarity cuts both ways. It makes the disease medically urgent, but financially invisible. When there are only 14 known patients in Spain, there is no large patient population, no obvious commercial market, and not much public familiarity. That leaves families doing everything at once — advocacy, fundraising, public education, and pushing labs to keep going. (murciaactualidad.com) ### Why does visibility matter as much as cash? For a disease this rare, awareness is not fluff — it is infrastructure. More visibility can mean faster diagnosis, more clinicians recognizing the condition, more researchers paying attention, and a better chance of stitching together enough cases to study. The ride is really a way of forcing a tiny patient group into public view. (murciaactualidad.com) ### Bottom line? This is a cycling fundraiser, yes, but really it is a work-around for a broken system. When a disease is ultra-rare, families often cannot wait for institutions to move first — so they build the bridge themselves, one kilometre at a time. (murciaactualidad.com)
