{"id":1868,"date":"2024-12-12T12:42:53","date_gmt":"2024-12-12T12:42:53","guid":{"rendered":"https:\/\/www.iforbes.cz\/?p=1868"},"modified":"2024-12-12T12:42:55","modified_gmt":"2024-12-12T12:42:55","slug":"nadacni-fond-radovan-prispeje-na-vyvoj-leku-pro-deti-s-angelmanovym-syndromem","status":"publish","type":"post","link":"https:\/\/www.iforbes.cz\/index.php\/2024\/12\/12\/nadacni-fond-radovan-prispeje-na-vyvoj-leku-pro-deti-s-angelmanovym-syndromem\/","title":{"rendered":"Nada\u010dn\u00ed fond Radovan p\u0159isp\u011bje na v\u00fdvoj l\u00e9ku pro d\u011bti s Angelmanov\u00fdm syndromem"},"content":{"rendered":"\n

Angelm\u00e1nci, nebo tak\u00e9 And\u011blsk\u00e9 d\u011bti, jsou d\u011bti trp\u00edc\u00ed Angelmanov\u00fdm syndromem, vz\u00e1cn\u00fdm genetick\u00fdm onemocn\u011bn\u00edm, kter\u00e9 v \u010cesku postihuje v\u00edce ne\u017e 80 pacient\u016f. Ka\u017ed\u00fd rok se narod\u00ed 2\u20133 dal\u0161\u00ed d\u011bti, jejich\u017e rodiny \u010del\u00ed n\u00e1ro\u010dn\u00fdm v\u00fdzv\u00e1m v p\u00e9\u010di o sv\u00e9 milovan\u00e9 \u2013 od ka\u017edodenn\u00edho boje s koordinac\u00ed a rovnov\u00e1hou a\u017e po \u017eivot s neust\u00e1l\u00fdm strachem z fat\u00e1ln\u00edch epileptick\u00fdch z\u00e1chvat\u016f. Ale nyn\u00ed p\u0159ich\u00e1z\u00ed nad\u011bje d\u00edky unik\u00e1tn\u00edmu v\u00fdzkumu, kter\u00fd podporuje Nada\u010dn\u00ed fond Radovan.<\/strong><\/p>\n\n\n\n

Nad\u011bje pro Angelm\u00e1nky? Sb\u00edrka!<\/strong><\/p>\n\n\n\n

Nada\u010dn\u00ed fond Radovan, kter\u00fd zalo\u017eila Nikol Leitgeb, zn\u00e1m\u00e1 svou dlouholetou pomoc\u00ed pot\u0159ebn\u00fdm, zah\u00e1jila prvn\u00ed adventn\u00ed ned\u011bli sb\u00edrku pr\u00e1v\u011b na podporu v\u00fdzkumu l\u00e9ku pro d\u011bti s Angelmanov\u00fdm syndromem. \u201eRodi\u010de Angelm\u00e1nk\u016f denn\u011b bojuj\u00ed s nep\u0159edstaviteln\u00fdmi p\u0159ek\u00e1\u017ekami.<\/em> Pokud m\u00e1me mo\u017enost jejich d\u011bti podpo\u0159it a d\u00e1t jim \u0161anci na lep\u0161\u00ed budoucnost, mus\u00edme to ud\u011blat<\/em>,\u201c \u0159\u00edk\u00e1 Nikol.<\/p>\n\n\n\n

V\u011bdeck\u00fd pokrok veden\u00fd \u010desk\u00fdm t\u00fdmem<\/strong><\/p>\n\n\n\n

D\u00edky odhodl\u00e1n\u00ed rodi\u010d\u016f d\u011bt\u00ed s Angelmanov\u00fdm syndromem a spolupr\u00e1ci s v\u011bdci z \u010cesk\u00e9ho centra pro fenogenomiku (CCP) se poda\u0159ilo vyvinout n\u00e1vrh funk\u010dn\u00edho terapeutick\u00e9ho postupu, kter\u00fd m\u00e1 potenci\u00e1l zm\u011bnit \u017eivoty t\u011bchto d\u011bt\u00ed. Nyn\u00ed je nutn\u00e9 financovat kl\u00ed\u010dovou preklinickou f\u00e1zi v\u00fdzkumu, kter\u00e1 zahrnuje laboratorn\u00ed testy a administrativn\u00ed procesy nezbytn\u00e9 pro registraci l\u00e9ku. Tento v\u00fdzkum m\u016f\u017ee v\u00e9st k prvn\u00edmu l\u00e9ku na Angelman\u016fv syndrom, co\u017e by pro mnoh\u00e9 rodiny znamenalo konec ka\u017edodenn\u00edho boje s nep\u0159edv\u00eddateln\u00fdmi a n\u00e1ro\u010dn\u00fdmi projevy onemocn\u011bn\u00ed.<\/p>\n\n\n\n

Pomozte s n\u00e1mi zm\u011bnit \u017eivoty Angelm\u00e1nk\u016f<\/strong><\/p>\n\n\n\n

Na str\u00e1nk\u00e1ch nada\u010dn\u00edho fondu Radovan je spu\u0161t\u011bna ve\u0159ejn\u00e1 sb\u00edrka, jej\u00edm\u017e c\u00edlem je zajistit financov\u00e1n\u00ed tohoto pr\u016flomov\u00e9ho v\u00fdzkumu. A \u010d\u00e1stka je to astronomick\u00e1. Jde o 20 milion\u016f korun. Ka\u017ed\u00fd dar, bez ohledu na jeho v\u00fd\u0161i, p\u0159ibli\u017euje \u010desk\u00fd v\u011bdeck\u00fd t\u00fdm ke dni, kdy se l\u00e9k dostane k prvn\u00edm pacient\u016fm. D\u00edky sb\u00edrce a podpo\u0159e ve\u0159ejnosti existuje \u0161ance prom\u011bnit nevyl\u00e9\u010diteln\u00e9 onemocn\u011bn\u00ed na l\u00e9\u010diteln\u00e9. Pomozte d\u00e1t Angelm\u00e1nk\u016fm nad\u011bji na lep\u0161\u00ed \u017eivot. P\u0159isp\u011bt m\u016f\u017eete jednodu\u0161e prost\u0159ednictv\u00edm webov\u00fdch str\u00e1nek www.nfradovan.cz<\/a>.<\/p>\n\n\n\n

Pro v\u00edce informac\u00ed a mo\u017enost p\u0159isp\u011bt nav\u0161tivte: www.nfradovan.cz<\/a>.<\/p>\n\n\n\n

Foto: Nada\u010dn\u00ed fond Radovan<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"

Angelm\u00e1nci, nebo tak\u00e9 And\u011blsk\u00e9 d\u011bti, jsou d\u011bti trp\u00edc\u00ed Angelmanov\u00fdm syndromem, vz\u00e1cn\u00fdm genetick\u00fdm onemocn\u011bn\u00edm, kter\u00e9 v \u010cesku postihuje v\u00edce ne\u017e 80<\/p>\n","protected":false},"author":1,"featured_media":1869,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"colormag_page_container_layout":"default_layout","colormag_page_sidebar_layout":"default_layout"},"categories":[53],"tags":[145,143,147,146,144],"_links":{"self":[{"href":"https:\/\/www.iforbes.cz\/index.php\/wp-json\/wp\/v2\/posts\/1868"}],"collection":[{"href":"https:\/\/www.iforbes.cz\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.iforbes.cz\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.iforbes.cz\/index.php\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.iforbes.cz\/index.php\/wp-json\/wp\/v2\/comments?post=1868"}],"version-history":[{"count":1,"href":"https:\/\/www.iforbes.cz\/index.php\/wp-json\/wp\/v2\/posts\/1868\/revisions"}],"predecessor-version":[{"id":1870,"href":"https:\/\/www.iforbes.cz\/index.php\/wp-json\/wp\/v2\/posts\/1868\/revisions\/1870"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.iforbes.cz\/index.php\/wp-json\/wp\/v2\/media\/1869"}],"wp:attachment":[{"href":"https:\/\/www.iforbes.cz\/index.php\/wp-json\/wp\/v2\/media?parent=1868"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.iforbes.cz\/index.php\/wp-json\/wp\/v2\/categories?post=1868"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.iforbes.cz\/index.php\/wp-json\/wp\/v2\/tags?post=1868"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}