{"id":53265,"date":"2026-09-04T17:55:26","date_gmt":"2026-09-04T15:55:26","guid":{"rendered":"https:\/\/travesiapirenaica.com\/?p=53265"},"modified":"2026-09-04T18:02:14","modified_gmt":"2026-09-04T16:02:14","slug":"el-sueno-de-hodei-e-ilargi-650-km-a-pie-contra-batten-cln6","status":"publish","type":"post","link":"https:\/\/travesiapirenaica.com\/fr\/el-sueno-de-hodei-e-ilargi-650-km-a-pie-contra-batten-cln6\/","title":{"rendered":"650 km en 6,5 jours : Le d\u00e9fi d'ultra-fond qui sauve des vies"},"content":{"rendered":"<p class=\"wp-block-paragraph\"><strong>Hodei e Ilargi son dos hermanos que viven en Aramend\u00eda, Navarra, y ambos corren contra el reloj. <\/strong>No porque sean veloces \u2014aunque lo sean\u2014, sino porque la <strong>enfermedad de Batten CLN6<\/strong> avanza sin piedad en sus cuerpos. No hay cura. Hay una esperanza: un ensayo cl\u00ednico internacional de terapia g\u00e9nica que podr\u00eda cambiar su futuro. El \u00fanico problema: necesita dos millones de d\u00f3lares para lanzarse.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Fernando Magaldi, ultrafondista asturiano de 61 a\u00f1os, decidi\u00f3 que ese dinero no llegar\u00e1 sin lucha. <strong>Entre el 14 y el 20 de septiembre correr\u00e1 650 kil\u00f3metros sin parar, de Santiago de Compostela a Ganuza, acompa\u00f1ado por Joseba, el padre de Hodei e Ilargi. <\/strong>Cien kil\u00f3metros diarios. Seis d\u00edas y medio. Menos de una hora de sue\u00f1o por noche. Un acto de resistencia que es tambi\u00e9n un acto de amor.<\/p>\n\n\n\n<blockquote class=\"instagram-media\" data-instgrm-permalink=\"https:\/\/www.instagram.com\/reel\/DbDt1jAzg-i\/?utm_source=ig_embed&amp;utm_campaign=loading\" data-instgrm-version=\"14\" style=\" background:#FFF; border:0; border-radius:3px; box-shadow:0 0 1px 0 rgba(0,0,0,0.5),0 1px 10px 0 rgba(0,0,0,0.15); margin: 1px; max-width:540px; min-width:326px; padding:0; width:99.375%; width:-webkit-calc(100% - 2px); width:calc(100% - 2px);\"><div style=\"padding:16px;\"> <a href=\"https:\/\/www.instagram.com\/reel\/DbDt1jAzg-i\/?utm_source=ig_embed&amp;utm_campaign=loading\" style=\" background:#FFFFFF; line-height:0; padding:0 0; text-align:center; text-decoration:none; width:100%;\" target=\"_blank\" rel=\"noopener\"> <div style=\" display: flex; flex-direction: row; align-items: center;\"> <div style=\"background-color: #F4F4F4; border-radius: 50%; flex-grow: 0; height: 40px; margin-right: 14px; width: 40px;\"><\/div> <div style=\"display: flex; flex-direction: column; flex-grow: 1; justify-content: center;\"> <div style=\" background-color: #F4F4F4; border-radius: 4px; flex-grow: 0; height: 14px; margin-bottom: 6px; width: 100px;\"><\/div> <div style=\" background-color: #F4F4F4; border-radius: 4px; flex-grow: 0; height: 14px; width: 60px;\"><\/div><\/div><\/div><div style=\"padding: 19% 0;\"><\/div> <div style=\"display:block; height:50px; margin:0 auto 12px; width:50px;\"><svg width=\"50px\" height=\"50px\" viewbox=\"0 0 60 60\" version=\"1.1\" xmlns=\"https:\/\/www.w3.org\/2000\/svg\" xmlns:xlink=\"https:\/\/www.w3.org\/1999\/xlink\"><g stroke=\"none\" stroke-width=\"1\" fill=\"none\" fill-rule=\"evenodd\"><g transform=\"translate(-511.000000, -20.000000)\" fill=\"#000000\"><g><path d=\"M556.869,30.41 C554.814,30.41 553.148,32.076 553.148,34.131 C553.148,36.186 554.814,37.852 556.869,37.852 C558.924,37.852 560.59,36.186 560.59,34.131 C560.59,32.076 558.924,30.41 556.869,30.41 M541,60.657 C535.114,60.657 530.342,55.887 530.342,50 C530.342,44.114 535.114,39.342 541,39.342 C546.887,39.342 551.658,44.114 551.658,50 C551.658,55.887 546.887,60.657 541,60.657 M541,33.886 C532.1,33.886 524.886,41.1 524.886,50 C524.886,58.899 532.1,66.113 541,66.113 C549.9,66.113 557.115,58.899 557.115,50 C557.115,41.1 549.9,33.886 541,33.886 M565.378,62.101 C565.244,65.022 564.756,66.606 564.346,67.663 C563.803,69.06 563.154,70.057 562.106,71.106 C561.058,72.155 560.06,72.803 558.662,73.347 C557.607,73.757 556.021,74.244 553.102,74.378 C549.944,74.521 548.997,74.552 541,74.552 C533.003,74.552 532.056,74.521 528.898,74.378 C525.979,74.244 524.393,73.757 523.338,73.347 C521.94,72.803 520.942,72.155 519.894,71.106 C518.846,70.057 518.197,69.06 517.654,67.663 C517.244,66.606 516.755,65.022 516.623,62.101 C516.479,58.943 516.448,57.996 516.448,50 C516.448,42.003 516.479,41.056 516.623,37.899 C516.755,34.978 517.244,33.391 517.654,32.338 C518.197,30.938 518.846,29.942 519.894,28.894 C520.942,27.846 521.94,27.196 523.338,26.654 C524.393,26.244 525.979,25.756 528.898,25.623 C532.057,25.479 533.004,25.448 541,25.448 C548.997,25.448 549.943,25.479 553.102,25.623 C556.021,25.756 557.607,26.244 558.662,26.654 C560.06,27.196 561.058,27.846 562.106,28.894 C563.154,29.942 563.803,30.938 564.346,32.338 C564.756,33.391 565.244,34.978 565.378,37.899 C565.522,41.056 565.552,42.003 565.552,50 C565.552,57.996 565.522,58.943 565.378,62.101 M570.82,37.631 C570.674,34.438 570.167,32.258 569.425,30.349 C568.659,28.377 567.633,26.702 565.965,25.035 C564.297,23.368 562.623,22.342 560.652,21.575 C558.743,20.834 556.562,20.326 553.369,20.18 C550.169,20.033 549.148,20 541,20 C532.853,20 531.831,20.033 528.631,20.18 C525.438,20.326 523.257,20.834 521.349,21.575 C519.376,22.342 517.703,23.368 516.035,25.035 C514.368,26.702 513.342,28.377 512.574,30.349 C511.834,32.258 511.326,34.438 511.181,37.631 C511.035,40.831 511,41.851 511,50 C511,58.147 511.035,59.17 511.181,62.369 C511.326,65.562 511.834,67.743 512.574,69.651 C513.342,71.625 514.368,73.296 516.035,74.965 C517.703,76.634 519.376,77.658 521.349,78.425 C523.257,79.167 525.438,79.673 528.631,79.82 C531.831,79.965 532.853,80.001 541,80.001 C549.148,80.001 550.169,79.965 553.369,79.82 C556.562,79.673 558.743,79.167 560.652,78.425 C562.623,77.658 564.297,76.634 565.965,74.965 C567.633,73.296 568.659,71.625 569.425,69.651 C570.167,67.743 570.674,65.562 570.82,62.369 C570.966,59.17 571,58.147 571,50 C571,41.851 570.966,40.831 570.82,37.631\"><\/path><\/g><\/g><\/g><\/svg><\/div><div style=\"padding-top: 8px;\"> <div style=\" color:#3897f0; font-family:Arial,sans-serif; font-size:14px; font-style:normal; font-weight:550; line-height:18px;\">Voir ce message sur Instagram<\/div><\/div><div style=\"padding: 12.5% 0;\"><\/div> <div style=\"display: flex; flex-direction: row; margin-bottom: 14px; align-items: center;\"><div> <div style=\"background-color: #F4F4F4; border-radius: 50%; height: 12.5px; width: 12.5px; transform: translateX(0px) translateY(7px);\"><\/div> <div style=\"background-color: #F4F4F4; height: 12.5px; transform: rotate(-45deg) translateX(3px) translateY(1px); width: 12.5px; flex-grow: 0; margin-right: 14px; margin-left: 2px;\"><\/div> <div style=\"background-color: #F4F4F4; border-radius: 50%; height: 12.5px; width: 12.5px; transform: translateX(9px) translateY(-18px);\"><\/div><\/div><div style=\"margin-left: 8px;\"> <div style=\" background-color: #F4F4F4; border-radius: 50%; flex-grow: 0; height: 20px; width: 20px;\"><\/div> <div style=\" width: 0; height: 0; border-top: 2px solid transparent; border-left: 6px solid #f4f4f4; border-bottom: 2px solid transparent; transform: translateX(16px) translateY(-4px) rotate(30deg)\"><\/div><\/div><div style=\"margin-left: auto;\"> <div style=\" width: 0px; border-top: 8px solid #F4F4F4; border-right: 8px solid transparent; transform: translateY(16px);\"><\/div> <div style=\" background-color: #F4F4F4; flex-grow: 0; height: 12px; width: 16px; transform: translateY(-4px);\"><\/div> <div style=\" width: 0; height: 0; border-top: 8px solid #F4F4F4; border-left: 8px solid transparent; transform: translateY(-4px) translateX(8px);\"><\/div><\/div><\/div> <div style=\"display: flex; flex-direction: column; flex-grow: 1; justify-content: center; margin-bottom: 24px;\"> <div style=\" background-color: #F4F4F4; border-radius: 4px; flex-grow: 0; height: 14px; margin-bottom: 6px; width: 224px;\"><\/div> <div style=\" background-color: #F4F4F4; border-radius: 4px; flex-grow: 0; height: 14px; width: 144px;\"><\/div><\/div><\/a><p style=\" color:#c9c8cd; font-family:Arial,sans-serif; font-size:14px; line-height:17px; margin-bottom:0; margin-top:8px; overflow:hidden; padding:8px 0 7px; text-align:center; text-overflow:ellipsis; white-space:nowrap;\"><a href=\"https:\/\/www.instagram.com\/reel\/DbDt1jAzg-i\/?utm_source=ig_embed&amp;utm_campaign=loading\" style=\" color:#c9c8cd; font-family:Arial,sans-serif; font-size:14px; font-style:normal; font-weight:normal; line-height:17px; text-decoration:none;\" target=\"_blank\" rel=\"noopener\">Una publicaci\u00f3n compartida de hodeilargi batten CLN6 (@hodeilargicln6)<\/a><\/p><\/div><\/blockquote>\n<script async src=\"\/\/www.instagram.com\/embed.js\"><\/script>\n\n\n\n<h2 class=\"wp-block-heading\">La enfermedad que nadie ve: Batten CLN6 <\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">Batten CLN6 es uno de esos nombres que casi nadie conoce. Es ultra-rara, gen\u00e9tica, neurodegenerativa. Afecta a apenas 1-4 personas por cada 100.000 nacimientos en Europa. Pero para las familias que la padecen, esas estad\u00edsticas no importan. Lo que importa es lo que viene despu\u00e9s.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Los ni\u00f1os con Batten nacen completamente normales. Crecen riendo, corriendo, aprendiendo como cualquier otro. Y entonces, sin aviso, la enfermedad comienza. La visi\u00f3n se desvanece hasta la ceguera total. Los m\u00fasculos pierden fuerza y control, acompa\u00f1ados de crisis epil\u00e9pticas que no cesan. La voz se va. Las palabras desaparecen. Las capacidades cognitivas se erosionan en demencia. La vida se apaga en la infancia o la adolescencia. Ver c\u00f3mo tus hijos pierden poco a poco todo lo aprendido es el dolor m\u00e1s grande al que se puede enfrentar un padre o una madre. Pero en esta historia no hay espacio para la rendici\u00f3n.<\/p>\n\n\n\n<blockquote class=\"instagram-media\" data-instgrm-permalink=\"https:\/\/www.instagram.com\/reel\/DbmLBLgzdHo\/?utm_source=ig_embed&amp;utm_campaign=loading\" data-instgrm-version=\"14\" style=\" background:#FFF; border:0; border-radius:3px; box-shadow:0 0 1px 0 rgba(0,0,0,0.5),0 1px 10px 0 rgba(0,0,0,0.15); margin: 1px; max-width:540px; min-width:326px; padding:0; width:99.375%; width:-webkit-calc(100% - 2px); width:calc(100% - 2px);\"><div style=\"padding:16px;\"> <a href=\"https:\/\/www.instagram.com\/reel\/DbmLBLgzdHo\/?utm_source=ig_embed&amp;utm_campaign=loading\" style=\" background:#FFFFFF; line-height:0; padding:0 0; text-align:center; text-decoration:none; width:100%;\" target=\"_blank\" rel=\"noopener\"> <div style=\" display: flex; flex-direction: row; align-items: center;\"> <div style=\"background-color: #F4F4F4; border-radius: 50%; flex-grow: 0; height: 40px; margin-right: 14px; width: 40px;\"><\/div> <div style=\"display: flex; flex-direction: column; flex-grow: 1; justify-content: center;\"> <div style=\" background-color: #F4F4F4; border-radius: 4px; flex-grow: 0; height: 14px; margin-bottom: 6px; width: 100px;\"><\/div> <div style=\" background-color: #F4F4F4; border-radius: 4px; flex-grow: 0; height: 14px; width: 60px;\"><\/div><\/div><\/div><div style=\"padding: 19% 0;\"><\/div> <div style=\"display:block; height:50px; margin:0 auto 12px; width:50px;\"><svg width=\"50px\" height=\"50px\" viewbox=\"0 0 60 60\" version=\"1.1\" xmlns=\"https:\/\/www.w3.org\/2000\/svg\" xmlns:xlink=\"https:\/\/www.w3.org\/1999\/xlink\"><g stroke=\"none\" stroke-width=\"1\" fill=\"none\" fill-rule=\"evenodd\"><g transform=\"translate(-511.000000, -20.000000)\" fill=\"#000000\"><g><path d=\"M556.869,30.41 C554.814,30.41 553.148,32.076 553.148,34.131 C553.148,36.186 554.814,37.852 556.869,37.852 C558.924,37.852 560.59,36.186 560.59,34.131 C560.59,32.076 558.924,30.41 556.869,30.41 M541,60.657 C535.114,60.657 530.342,55.887 530.342,50 C530.342,44.114 535.114,39.342 541,39.342 C546.887,39.342 551.658,44.114 551.658,50 C551.658,55.887 546.887,60.657 541,60.657 M541,33.886 C532.1,33.886 524.886,41.1 524.886,50 C524.886,58.899 532.1,66.113 541,66.113 C549.9,66.113 557.115,58.899 557.115,50 C557.115,41.1 549.9,33.886 541,33.886 M565.378,62.101 C565.244,65.022 564.756,66.606 564.346,67.663 C563.803,69.06 563.154,70.057 562.106,71.106 C561.058,72.155 560.06,72.803 558.662,73.347 C557.607,73.757 556.021,74.244 553.102,74.378 C549.944,74.521 548.997,74.552 541,74.552 C533.003,74.552 532.056,74.521 528.898,74.378 C525.979,74.244 524.393,73.757 523.338,73.347 C521.94,72.803 520.942,72.155 519.894,71.106 C518.846,70.057 518.197,69.06 517.654,67.663 C517.244,66.606 516.755,65.022 516.623,62.101 C516.479,58.943 516.448,57.996 516.448,50 C516.448,42.003 516.479,41.056 516.623,37.899 C516.755,34.978 517.244,33.391 517.654,32.338 C518.197,30.938 518.846,29.942 519.894,28.894 C520.942,27.846 521.94,27.196 523.338,26.654 C524.393,26.244 525.979,25.756 528.898,25.623 C532.057,25.479 533.004,25.448 541,25.448 C548.997,25.448 549.943,25.479 553.102,25.623 C556.021,25.756 557.607,26.244 558.662,26.654 C560.06,27.196 561.058,27.846 562.106,28.894 C563.154,29.942 563.803,30.938 564.346,32.338 C564.756,33.391 565.244,34.978 565.378,37.899 C565.522,41.056 565.552,42.003 565.552,50 C565.552,57.996 565.522,58.943 565.378,62.101 M570.82,37.631 C570.674,34.438 570.167,32.258 569.425,30.349 C568.659,28.377 567.633,26.702 565.965,25.035 C564.297,23.368 562.623,22.342 560.652,21.575 C558.743,20.834 556.562,20.326 553.369,20.18 C550.169,20.033 549.148,20 541,20 C532.853,20 531.831,20.033 528.631,20.18 C525.438,20.326 523.257,20.834 521.349,21.575 C519.376,22.342 517.703,23.368 516.035,25.035 C514.368,26.702 513.342,28.377 512.574,30.349 C511.834,32.258 511.326,34.438 511.181,37.631 C511.035,40.831 511,41.851 511,50 C511,58.147 511.035,59.17 511.181,62.369 C511.326,65.562 511.834,67.743 512.574,69.651 C513.342,71.625 514.368,73.296 516.035,74.965 C517.703,76.634 519.376,77.658 521.349,78.425 C523.257,79.167 525.438,79.673 528.631,79.82 C531.831,79.965 532.853,80.001 541,80.001 C549.148,80.001 550.169,79.965 553.369,79.82 C556.562,79.673 558.743,79.167 560.652,78.425 C562.623,77.658 564.297,76.634 565.965,74.965 C567.633,73.296 568.659,71.625 569.425,69.651 C570.167,67.743 570.674,65.562 570.82,62.369 C570.966,59.17 571,58.147 571,50 C571,41.851 570.966,40.831 570.82,37.631\"><\/path><\/g><\/g><\/g><\/svg><\/div><div style=\"padding-top: 8px;\"> <div style=\" color:#3897f0; font-family:Arial,sans-serif; font-size:14px; font-style:normal; font-weight:550; line-height:18px;\">Voir ce message sur Instagram<\/div><\/div><div style=\"padding: 12.5% 0;\"><\/div> <div style=\"display: flex; flex-direction: row; margin-bottom: 14px; align-items: center;\"><div> <div style=\"background-color: #F4F4F4; border-radius: 50%; height: 12.5px; width: 12.5px; transform: translateX(0px) translateY(7px);\"><\/div> <div style=\"background-color: #F4F4F4; height: 12.5px; transform: rotate(-45deg) translateX(3px) translateY(1px); width: 12.5px; flex-grow: 0; margin-right: 14px; margin-left: 2px;\"><\/div> <div style=\"background-color: #F4F4F4; border-radius: 50%; height: 12.5px; width: 12.5px; transform: translateX(9px) translateY(-18px);\"><\/div><\/div><div style=\"margin-left: 8px;\"> <div style=\" background-color: #F4F4F4; border-radius: 50%; flex-grow: 0; height: 20px; width: 20px;\"><\/div> <div style=\" width: 0; height: 0; border-top: 2px solid transparent; border-left: 6px solid #f4f4f4; border-bottom: 2px solid transparent; transform: translateX(16px) translateY(-4px) rotate(30deg)\"><\/div><\/div><div style=\"margin-left: auto;\"> <div style=\" width: 0px; border-top: 8px solid #F4F4F4; border-right: 8px solid transparent; transform: translateY(16px);\"><\/div> <div style=\" background-color: #F4F4F4; flex-grow: 0; height: 12px; width: 16px; transform: translateY(-4px);\"><\/div> <div style=\" width: 0; height: 0; border-top: 8px solid #F4F4F4; border-left: 8px solid transparent; transform: translateY(-4px) translateX(8px);\"><\/div><\/div><\/div> <div style=\"display: flex; flex-direction: column; flex-grow: 1; justify-content: center; margin-bottom: 24px;\"> <div style=\" background-color: #F4F4F4; border-radius: 4px; flex-grow: 0; height: 14px; margin-bottom: 6px; width: 224px;\"><\/div> <div style=\" background-color: #F4F4F4; border-radius: 4px; flex-grow: 0; height: 14px; width: 144px;\"><\/div><\/div><\/a><p style=\" color:#c9c8cd; font-family:Arial,sans-serif; font-size:14px; line-height:17px; margin-bottom:0; margin-top:8px; overflow:hidden; padding:8px 0 7px; text-align:center; text-overflow:ellipsis; white-space:nowrap;\"><a href=\"https:\/\/www.instagram.com\/reel\/DbmLBLgzdHo\/?utm_source=ig_embed&amp;utm_campaign=loading\" style=\" color:#c9c8cd; font-family:Arial,sans-serif; font-size:14px; font-style:normal; font-weight:normal; line-height:17px; text-decoration:none;\" target=\"_blank\" rel=\"noopener\">Una publicaci\u00f3n compartida de hodeilargi batten CLN6 (@hodeilargicln6)<\/a><\/p><\/div><\/blockquote>\n<script async src=\"\/\/www.instagram.com\/embed.js\"><\/script>\n\n\n\n<h2 class=\"wp-block-heading\">La pieza del puzzle<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">Actualmente no hay cura. Pero la ciencia tiene algo que los padres de Hodei e Ilargi consideran lo m\u00e1s parecido a un milagro,  un ensayo cl\u00ednico internacional de terapia g\u00e9nica. La Fundaci\u00f3n CureBatten coordina el proyecto desde Estados Unidos. Familias y asociaciones de todo el mundo se han unido en una alianza global. El coste total es astron\u00f3mico: dos millones de d\u00f3lares para poner en marcha el ensayo cl\u00ednico que podr\u00eda cambiar el futuro de Hodei, Ilargi y muchos otros ni\u00f1os en el planeta.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Es una cifra imposible para una sola familia. Pero desde la Asociaci\u00f3n Hodeilargi, creada por los propios padres para visibilizar la enfermedad y recaudar fondos, decidieron algo: queremos aportar nuestra pieza del puzzle. Y para eso, se pusieron las zapatillas.<\/p>\n\n\n\n<blockquote class=\"instagram-media\" data-instgrm-permalink=\"https:\/\/www.instagram.com\/p\/DbiF4ZlDKdK\/?utm_source=ig_embed&amp;utm_campaign=loading\" data-instgrm-version=\"14\" style=\" background:#FFF; border:0; border-radius:3px; box-shadow:0 0 1px 0 rgba(0,0,0,0.5),0 1px 10px 0 rgba(0,0,0,0.15); margin: 1px; max-width:540px; min-width:326px; padding:0; width:99.375%; width:-webkit-calc(100% - 2px); width:calc(100% - 2px);\"><div style=\"padding:16px;\"> <a href=\"https:\/\/www.instagram.com\/p\/DbiF4ZlDKdK\/?utm_source=ig_embed&amp;utm_campaign=loading\" style=\" background:#FFFFFF; line-height:0; padding:0 0; text-align:center; text-decoration:none; width:100%;\" target=\"_blank\" rel=\"noopener\"> <div style=\" display: flex; flex-direction: row; align-items: center;\"> <div style=\"background-color: #F4F4F4; border-radius: 50%; flex-grow: 0; height: 40px; margin-right: 14px; width: 40px;\"><\/div> <div style=\"display: flex; flex-direction: column; flex-grow: 1; justify-content: center;\"> <div style=\" background-color: #F4F4F4; border-radius: 4px; flex-grow: 0; height: 14px; margin-bottom: 6px; width: 100px;\"><\/div> <div style=\" background-color: #F4F4F4; border-radius: 4px; flex-grow: 0; height: 14px; width: 60px;\"><\/div><\/div><\/div><div style=\"padding: 19% 0;\"><\/div> <div style=\"display:block; height:50px; margin:0 auto 12px; width:50px;\"><svg width=\"50px\" height=\"50px\" viewbox=\"0 0 60 60\" version=\"1.1\" xmlns=\"https:\/\/www.w3.org\/2000\/svg\" xmlns:xlink=\"https:\/\/www.w3.org\/1999\/xlink\"><g stroke=\"none\" stroke-width=\"1\" fill=\"none\" fill-rule=\"evenodd\"><g transform=\"translate(-511.000000, -20.000000)\" fill=\"#000000\"><g><path d=\"M556.869,30.41 C554.814,30.41 553.148,32.076 553.148,34.131 C553.148,36.186 554.814,37.852 556.869,37.852 C558.924,37.852 560.59,36.186 560.59,34.131 C560.59,32.076 558.924,30.41 556.869,30.41 M541,60.657 C535.114,60.657 530.342,55.887 530.342,50 C530.342,44.114 535.114,39.342 541,39.342 C546.887,39.342 551.658,44.114 551.658,50 C551.658,55.887 546.887,60.657 541,60.657 M541,33.886 C532.1,33.886 524.886,41.1 524.886,50 C524.886,58.899 532.1,66.113 541,66.113 C549.9,66.113 557.115,58.899 557.115,50 C557.115,41.1 549.9,33.886 541,33.886 M565.378,62.101 C565.244,65.022 564.756,66.606 564.346,67.663 C563.803,69.06 563.154,70.057 562.106,71.106 C561.058,72.155 560.06,72.803 558.662,73.347 C557.607,73.757 556.021,74.244 553.102,74.378 C549.944,74.521 548.997,74.552 541,74.552 C533.003,74.552 532.056,74.521 528.898,74.378 C525.979,74.244 524.393,73.757 523.338,73.347 C521.94,72.803 520.942,72.155 519.894,71.106 C518.846,70.057 518.197,69.06 517.654,67.663 C517.244,66.606 516.755,65.022 516.623,62.101 C516.479,58.943 516.448,57.996 516.448,50 C516.448,42.003 516.479,41.056 516.623,37.899 C516.755,34.978 517.244,33.391 517.654,32.338 C518.197,30.938 518.846,29.942 519.894,28.894 C520.942,27.846 521.94,27.196 523.338,26.654 C524.393,26.244 525.979,25.756 528.898,25.623 C532.057,25.479 533.004,25.448 541,25.448 C548.997,25.448 549.943,25.479 553.102,25.623 C556.021,25.756 557.607,26.244 558.662,26.654 C560.06,27.196 561.058,27.846 562.106,28.894 C563.154,29.942 563.803,30.938 564.346,32.338 C564.756,33.391 565.244,34.978 565.378,37.899 C565.522,41.056 565.552,42.003 565.552,50 C565.552,57.996 565.522,58.943 565.378,62.101 M570.82,37.631 C570.674,34.438 570.167,32.258 569.425,30.349 C568.659,28.377 567.633,26.702 565.965,25.035 C564.297,23.368 562.623,22.342 560.652,21.575 C558.743,20.834 556.562,20.326 553.369,20.18 C550.169,20.033 549.148,20 541,20 C532.853,20 531.831,20.033 528.631,20.18 C525.438,20.326 523.257,20.834 521.349,21.575 C519.376,22.342 517.703,23.368 516.035,25.035 C514.368,26.702 513.342,28.377 512.574,30.349 C511.834,32.258 511.326,34.438 511.181,37.631 C511.035,40.831 511,41.851 511,50 C511,58.147 511.035,59.17 511.181,62.369 C511.326,65.562 511.834,67.743 512.574,69.651 C513.342,71.625 514.368,73.296 516.035,74.965 C517.703,76.634 519.376,77.658 521.349,78.425 C523.257,79.167 525.438,79.673 528.631,79.82 C531.831,79.965 532.853,80.001 541,80.001 C549.148,80.001 550.169,79.965 553.369,79.82 C556.562,79.673 558.743,79.167 560.652,78.425 C562.623,77.658 564.297,76.634 565.965,74.965 C567.633,73.296 568.659,71.625 569.425,69.651 C570.167,67.743 570.674,65.562 570.82,62.369 C570.966,59.17 571,58.147 571,50 C571,41.851 570.966,40.831 570.82,37.631\"><\/path><\/g><\/g><\/g><\/svg><\/div><div style=\"padding-top: 8px;\"> <div style=\" color:#3897f0; font-family:Arial,sans-serif; font-size:14px; font-style:normal; font-weight:550; line-height:18px;\">Voir ce message sur Instagram<\/div><\/div><div style=\"padding: 12.5% 0;\"><\/div> <div style=\"display: flex; flex-direction: row; margin-bottom: 14px; align-items: center;\"><div> <div style=\"background-color: #F4F4F4; border-radius: 50%; height: 12.5px; width: 12.5px; transform: translateX(0px) translateY(7px);\"><\/div> <div style=\"background-color: #F4F4F4; height: 12.5px; transform: rotate(-45deg) translateX(3px) translateY(1px); width: 12.5px; flex-grow: 0; margin-right: 14px; margin-left: 2px;\"><\/div> <div style=\"background-color: #F4F4F4; border-radius: 50%; height: 12.5px; width: 12.5px; transform: translateX(9px) translateY(-18px);\"><\/div><\/div><div style=\"margin-left: 8px;\"> <div style=\" background-color: #F4F4F4; border-radius: 50%; flex-grow: 0; height: 20px; width: 20px;\"><\/div> <div style=\" width: 0; height: 0; border-top: 2px solid transparent; border-left: 6px solid #f4f4f4; border-bottom: 2px solid transparent; transform: translateX(16px) translateY(-4px) rotate(30deg)\"><\/div><\/div><div style=\"margin-left: auto;\"> <div style=\" width: 0px; border-top: 8px solid #F4F4F4; border-right: 8px solid transparent; transform: translateY(16px);\"><\/div> <div style=\" background-color: #F4F4F4; flex-grow: 0; height: 12px; width: 16px; transform: translateY(-4px);\"><\/div> <div style=\" width: 0; height: 0; border-top: 8px solid #F4F4F4; border-left: 8px solid transparent; transform: translateY(-4px) translateX(8px);\"><\/div><\/div><\/div> <div style=\"display: flex; flex-direction: column; flex-grow: 1; justify-content: center; margin-bottom: 24px;\"> <div style=\" background-color: #F4F4F4; border-radius: 4px; flex-grow: 0; height: 14px; margin-bottom: 6px; width: 224px;\"><\/div> <div style=\" background-color: #F4F4F4; border-radius: 4px; flex-grow: 0; height: 14px; width: 144px;\"><\/div><\/div><\/a><p style=\" color:#c9c8cd; font-family:Arial,sans-serif; font-size:14px; line-height:17px; margin-bottom:0; margin-top:8px; overflow:hidden; padding:8px 0 7px; text-align:center; text-overflow:ellipsis; white-space:nowrap;\"><a href=\"https:\/\/www.instagram.com\/p\/DbiF4ZlDKdK\/?utm_source=ig_embed&amp;utm_campaign=loading\" style=\" color:#c9c8cd; font-family:Arial,sans-serif; font-size:14px; font-style:normal; font-weight:normal; line-height:17px; text-decoration:none;\" target=\"_blank\" rel=\"noopener\">Una publicaci\u00f3n compartida de hodeilargi batten CLN6 (@hodeilargicln6)<\/a><\/p><\/div><\/blockquote>\n<script async src=\"\/\/www.instagram.com\/embed.js\"><\/script>\n\n\n\n<p class=\"wp-block-paragraph\">Fernando Magaldi escuch\u00f3 la llamada. Hace tres a\u00f1os fund\u00f3 \u00abCorriendo por los que no pueden\u00bb, una asociaci\u00f3n sin \u00e1nimo de lucro basada en una premisa simple: lo que no se ve, no se investiga. Desde entonces, ha convertido su cuerpo en plataforma de visibilizaci\u00f3n. En 2024 recorri\u00f3 1.010 kil\u00f3metros en La Rioja en 16 d\u00edas. En 2025 atraves\u00f3 2.330 kil\u00f3metros en cinco comunidades aut\u00f3nomas en 37 d\u00edas seguidos. Cada reto es m\u00e1s ambicioso que el anterior. Cada uno genera conversaci\u00f3n, medios, dinero.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Pero nada como lo que viene ahora. Nada como lo que Fernando se propone hacer en septiembre.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Qu\u00e9 significa 650 kil\u00f3metros en seis d\u00edas<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">Para entender la magnitud de este reto, hay que entender los n\u00fameros. Fernando va a correr una <strong>media de 100 kil\u00f3metros diarios durante 6,5 d\u00edas consecutivos. <\/strong>Comenzar\u00e1 a las 00:00 del <strong>14 de septiembre en Santiago de Compostela y cruzar\u00e1 la l\u00ednea de meta a las 13:00 del 20 de septiembre en Ganuza, a 50 kil\u00f3metros del hogar de Hodei e Ilargi. <\/strong>No es casualidad. Es simb\u00f3lico e inverso al Camino de Santiago,  en lugar de llegar tras semanas, sale en busca de una causa. Su destino no es espiritual. Es precisamente real. Fernando invierte el simbolismo. En lugar de buscar respuestas espirituales, sale en busca de cient\u00edficas. Su destino no es la tumba de un ap\u00f3stol. Es el hogar de dos hermanos que necesitan investigaci\u00f3n.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Para alguien que comprende el ultrafondo, estos n\u00fameros son brutales. Un ultramaratoniano t\u00edpico corre entre 50 y 80 kil\u00f3metros diarios en retos de varias semanas. Fernando ha hecho retos de 54-63 kil\u00f3metros diarios durante 37 d\u00edas seguidos y ha sobrevivido. Pero esto es aproximadamente el doble de intensidad en la mitad del tiempo.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Durante esos 156 horas de carrera, Fernando dormir\u00e1 menos de una hora diaria. Su cuerpo quemar\u00e1 entre 8.000 y 12.000 calor\u00edas cada jornada. Necesitar\u00e1 litros de agua y electrolitos cada hora para evitar la deshidrataci\u00f3n. Los m\u00fasculos se deteriorar\u00e1n sin capacidad de recuperaci\u00f3n. El cerebro funcionar\u00e1 en modo crisis: alucinaciones, confusi\u00f3n mental, p\u00e1nico son s\u00edntomas normales en ultrafondos de esta intensidad. Los pies sufrir\u00e1n ampollas devastadoras. El est\u00f3mago perder\u00e1 la capacidad de procesar alimento. Los tendones estar\u00e1n al borde del fallo.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Para comparar: el Camino de Santiago franc\u00e9s t\u00edpico es 780 kil\u00f3metros en 33 etapas, lo que requiere caminar aproximadamente 24 kil\u00f3metros diarios durante 33 d\u00edas. Fernando har\u00e1 casi la misma distancia corriendo en 6,5 d\u00edas. Literalmente, recorrer lo que otros caminan en cinco semanas en apenas una semana.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Pero Fernando no corre solo. Joseba, el padre de Hodei e Ilargi, lo acompa\u00f1ar\u00e1 durante todo el recorrido. No es una cuesti\u00f3n de apoyo abstracto. Es una familia corriendo junto al atleta contra el tiempo.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">La recaudaci\u00f3n: meta y destino<\/h2>\n\n\n\n<figure class=\"wp-block-image size-large\"><a href=\"https:\/\/www.gofundme.com\/f\/el-sueno-de-hodei-e-ilargi-650-km-a-pie-contra-batten-cln6?cp_src=d\" target=\"_blank\" rel=\"noopener\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"594\" src=\"https:\/\/travesiapirenaica.com\/wp-content\/uploads\/2026\/09\/image-1024x594.png\" alt=\"\" class=\"wp-image-53358\" srcset=\"https:\/\/travesiapirenaica.com\/wp-content\/uploads\/2026\/09\/image-1024x594.png 1024w, https:\/\/travesiapirenaica.com\/wp-content\/uploads\/2026\/09\/image-300x174.png 300w, https:\/\/travesiapirenaica.com\/wp-content\/uploads\/2026\/09\/image-18x10.png 18w, https:\/\/travesiapirenaica.com\/wp-content\/uploads\/2026\/09\/image-767x445.png 767w, https:\/\/travesiapirenaica.com\/wp-content\/uploads\/2026\/09\/image-598x347.png 598w, https:\/\/travesiapirenaica.com\/wp-content\/uploads\/2026\/09\/image.png 1202w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/a><\/figure>\n\n\n\n<p class=\"wp-block-paragraph\"><strong><a href=\"https:\/\/www.gofundme.com\/f\/el-sueno-de-hodei-e-ilargi-650-km-a-pie-contra-batten-cln6?cp_src=d\" target=\"_blank\" rel=\"noopener\">La Asociaci\u00f3n Hodeilargi se ha propuesto una meta simb\u00f3lica: 65.000 euros. Uno por cada kil\u00f3metro que Fernando correr\u00e1. <\/a><\/strong>Todo lo recaudado ir\u00e1 directamente a la investigaci\u00f3n de Batten CLN6, principalmente a la Fundaci\u00f3n CureBatten para financiar el ensayo de terapia g\u00e9nica internacional. Es la pieza del puzzle de Hodeilargi en una alianza global que persigue dos millones de d\u00f3lares totales.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">La campa\u00f1a vive en GoFundMe bajo el t\u00edtulo <strong><a href=\"https:\/\/www.gofundme.com\/f\/el-sueno-de-hodei-e-ilargi-650-km-a-pie-contra-batten-cln6?cp_src=d\" target=\"_blank\" rel=\"noopener\">\u00abEl sue\u00f1o de Hodei e Ilargi: 650 km a pie contra Batten CLN6\u00bb<\/a><\/strong>. Es el canal principal de recaudaci\u00f3n. All\u00ed, cada donaci\u00f3n es un paso m\u00e1s en el camino hacia la cura. Diez euros dan esperanza e impulso. Cincuenta euros financian trabajo de laboratorio necesario para el lanzamiento del ensayo. Cien euros o m\u00e1s te convierten en padrino de un kil\u00f3metro completo del reto, transform\u00e1ndote en motor clave para acelerar la llegada de la terapia a los pacientes.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Pero la recaudaci\u00f3n no se limita a GoFundMe. Los canales son m\u00faltiples. Hay quien se suma corriendo sus propios kil\u00f3metros en Strava, dentro del club \u00abAsociaci\u00f3n Hodeilargi\u00bb, sumando n\u00fameros que se cuentan globalmente. Hay merchandising solidario: camisetas de 12 euros que se venden en eventos y en l\u00ednea. Hay carreras locales y eventos donde se re\u00fane dinero. Hay donaciones directas a Hodeilargi.org para quienes necesitan certificado fiscal.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Es un movimiento. No es un hombre corriendo solo. Es una comunidad corriendo junto a \u00e9l.<\/p>\n\n\n\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"819\" height=\"1024\" src=\"https:\/\/travesiapirenaica.com\/wp-content\/uploads\/2026\/09\/image-1-819x1024.png\" alt=\"\" class=\"wp-image-53360\" srcset=\"https:\/\/travesiapirenaica.com\/wp-content\/uploads\/2026\/09\/image-1-819x1024.png 819w, https:\/\/travesiapirenaica.com\/wp-content\/uploads\/2026\/09\/image-1-240x300.png 240w, https:\/\/travesiapirenaica.com\/wp-content\/uploads\/2026\/09\/image-1-768x960.png 768w, https:\/\/travesiapirenaica.com\/wp-content\/uploads\/2026\/09\/image-1-1228x1536.png 1228w, https:\/\/travesiapirenaica.com\/wp-content\/uploads\/2026\/09\/image-1-10x12.png 10w, https:\/\/travesiapirenaica.com\/wp-content\/uploads\/2026\/09\/image-1-600x750.png 600w, https:\/\/travesiapirenaica.com\/wp-content\/uploads\/2026\/09\/image-1.png 1414w\" sizes=\"auto, (max-width: 819px) 100vw, 819px\" \/><\/figure>","protected":false},"excerpt":{"rendered":"Hodei e Ilargi son dos hermanos que viven en Aramend\u00eda, Navarra, y ambos corren contra...","protected":false},"author":1,"featured_media":53365,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_kad_blocks_custom_css":"","_kad_blocks_head_custom_js":"","_kad_blocks_body_custom_js":"","_kad_blocks_footer_custom_js":"","_wp_convertkit_post_meta":{"form":"-1","landing_page":"0","tag":"0","restrict_content":"0"},"_kadence_starter_templates_imported_post":false,"_kad_post_transparent":"","_kad_post_title":"","_kad_post_layout":"","_kad_post_sidebar_id":"","_kad_post_content_style":"","_kad_post_vertical_padding":"","_kad_post_feature":"","_kad_post_feature_position":"","_kad_post_header":false,"_kad_post_footer":false,"_kad_post_classname":"","_jetpack_feature_clip_id":0,"_jetpack_memberships_contains_paid_content":false,"episode_type":"audio","audio_file":"","podmotor_file_id":"","podmotor_episode_id":"","cover_image":"","cover_image_id":"","duration":"","filesize":"","filesize_raw":"","date_recorded":"","explicit":"","block":"","footnotes":""},"categories":[2945,3002],"tags":[],"series":[],"class_list":["post-53265","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-camino-de-santiago","category-actualidad"],"episode_featured_image":"https:\/\/travesiapirenaica.com\/wp-content\/uploads\/2026\/09\/El-sueno-de-Hodei-e-Ilargi-650-km-a-pie-contra-Batten-CLN6-_.webp","episode_player_image":"https:\/\/travesiapirenaica.com\/wp-content\/uploads\/2017\/12\/Caratula-Podcast-Maldita-Montana_1500x1500_72pp-p_.jpg","download_link":"","player_link":"","audio_player":false,"episode_data":{"playerMode":"dark","subscribeUrls":[],"rssFeedUrl":"https:\/\/travesiapirenaica.com\/fr\/feed\/podcast\/maldita-montana","embedCode":"<blockquote class=\"wp-embedded-content\" data-secret=\"SBQ9ocSeV3\"><a href=\"https:\/\/travesiapirenaica.com\/fr\/el-sueno-de-hodei-e-ilargi-650-km-a-pie-contra-batten-cln6\/\">650 km en 6,5 d\u00edas: El reto ultrafondo que salva vidas<\/a><\/blockquote><iframe sandbox=\"allow-scripts\" security=\"restricted\" src=\"https:\/\/travesiapirenaica.com\/fr\/el-sueno-de-hodei-e-ilargi-650-km-a-pie-contra-batten-cln6\/embed\/#?secret=SBQ9ocSeV3\" width=\"500\" height=\"350\" title=\"\u00ab\u00a0650 km en 6,5 d\u00edas: El reto ultrafondo que salva vidas\u00a0\u00bb &#8212; Traves\u00eda.\" data-secret=\"SBQ9ocSeV3\" frameborder=\"0\" marginwidth=\"0\" marginheight=\"0\" scrolling=\"no\" class=\"wp-embedded-content\"><\/iframe><script>\n\/*! 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