{"id":7925,"date":"2025-01-03T11:43:16","date_gmt":"2025-01-03T11:43:16","guid":{"rendered":"https:\/\/fundaciomiquelvalls.org\/comencem-el-2025-amb-illusio-i-compromis\/"},"modified":"2025-07-15T09:49:12","modified_gmt":"2025-07-15T07:49:12","slug":"comencem-el-2025-amb-illusio-i-compromis","status":"publish","type":"post","link":"https:\/\/fundaciomiquelvalls.org\/es\/comencem-el-2025-amb-illusio-i-compromis\/","title":{"rendered":"Comencem el 2025 amb il\u00b7lusi\u00f3 i comprom\u00eds"},"content":{"rendered":"\n<p>L&#8217;any 2025 ha comen\u00e7at amb bon peu, el nostre n\u00famero de la Loteria de Nadal ha estat premiat amb un premi menor, i aix\u00f2 ens ha perm\u00e8s repartir una mica d&#8217;il\u00b7lusi\u00f3 a totes les persones que ens heu ajudat amb la compra de les nostres participacions solid\u00e0ries.<\/p>\n\n\n\n<p>Un dels primers objectius per a aquest 2025 \u00e9s la implementaci\u00f3 de la Llei ELA, vigent des del 31 d&#8217;octubre de 2024, per\u00f2 encara sense resultats concrets que canvi\u00efn la vida de les persones afectades per aquesta malaltia. Per aconseguir-los, necessitem con\u00e8ixer el m\u00e9s aviat possible el pressupost destinat a la llei i els mecanismes que s\u2019estan implementant per posar en marxa tots els punts&nbsp;que inclou. Tamb\u00e9 considerem molt urgent saber com es portar\u00e0 a terme la formaci\u00f3 dels cuidadors i com s\u2019accedir\u00e0 a la supervisi\u00f3 continuada i atenci\u00f3 especialitzada les 24 hores per prevenir el risc de mort evitable. En aquest sentit, una de les nostres principals demandes \u00e9s la creaci\u00f3 de comissions de seguiment, tant a nivell estatal com auton\u00f2mic, per garantir que els responsables directes de la implementaci\u00f3 de la llei ens informin en temps real dels passos que s&#8217;estan donant. Aix\u00ed, nosaltres tamb\u00e9 podrem transmetre&#8217;ls la situaci\u00f3 de les persones afectades a les quals acompanyem cada dia.<\/p>\n\n\n\n<p>Seguirem treballant intensament, des de la Fundaci\u00f3 i tamb\u00e9 des de ConELA, per aconseguir que els governs compleixin amb el dret subjectiu que aquesta llei atorga a les persones amb ELA. &nbsp;<\/p>\n\n\n\n<p>Per acabar, per\u00f2 no menys important, aquest any la Fundaci\u00f3 celebra els seus 20 anys des de la seva creaci\u00f3. \u00c9s un moment per celebrar els \u00e8xits aconseguits fins ara i reflexionar sobre tot el que hem avan\u00e7at. Per\u00f2 tamb\u00e9 per adonar-nos que tenim molt per fer, no nom\u00e9s en termes de drets i cures, sin\u00f3 tamb\u00e9 en investigaci\u00f3, ja que el nostre desig m\u00e9s gran \u00e9s que l&#8217;ELA sigui una malaltia curable. Fins que aix\u00f2 no sigui una realitat, hem de seguir treballant amb tota la nostra for\u00e7a i determinaci\u00f3.<\/p>\n\n\n\n<p class=\"has-text-align-right\"><em>Esther Sell\u00e9s, Directora General de la Fundaci\u00f3 Catalana d&#8217;ELA Miquel Valls<\/em><\/p>\n\n\n<div class=\"wp-block-image\">\n<figure class=\"alignright size-large is-resized\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"657\" src=\"https:\/\/fundaciomiquelvalls.org\/wp-content\/uploads\/2025\/01\/Esther-Selles-1024x657.jpeg\" alt=\"\" class=\"wp-image-7920\" style=\"width:337px;height:auto\" srcset=\"https:\/\/fundaciomiquelvalls.org\/wp-content\/uploads\/2025\/01\/Esther-Selles-1024x657.jpeg 1024w, https:\/\/fundaciomiquelvalls.org\/wp-content\/uploads\/2025\/01\/Esther-Selles-300x193.jpeg 300w, https:\/\/fundaciomiquelvalls.org\/wp-content\/uploads\/2025\/01\/Esther-Selles-768x493.jpeg 768w, https:\/\/fundaciomiquelvalls.org\/wp-content\/uploads\/2025\/01\/Esther-Selles-958x615.jpeg 958w, https:\/\/fundaciomiquelvalls.org\/wp-content\/uploads\/2025\/01\/Esther-Selles.jpeg 1145w\"  sizes=\"(max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n<\/div>","protected":false},"excerpt":{"rendered":"<p>Esther Sell\u00e9s, directora general de la Fundaci\u00f3 Catalana d&#8217;ELA Miquel Valls, firma aquest editorial amb els objectius i prop\u00f2sits que com a fundaci\u00f3 tenim aquest 2025 per ajudar a les persones afectades d&#8217;ELA i les seves fam\u00edlies.<\/p>\n","protected":false},"author":1,"featured_media":7923,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[90],"tags":[91,122,290],"class_list":["post-7925","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-actualitat-es","tag-ela-es","tag-fundacio-catalana-dela-miquel-valls-es","tag-llei-ela-es"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.9 - 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