{"id":50285,"date":"2024-07-01T11:24:27","date_gmt":"2024-07-01T09:24:27","guid":{"rendered":"https:\/\/www.invarena.cz\/?p=50285"},"modified":"2024-07-01T11:24:28","modified_gmt":"2024-07-01T09:24:28","slug":"sbirka-zaku-na-vyzkum-geneticke-choroby","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=50285","title":{"rendered":"Sb\u00edrka \u017e\u00e1k\u016f na v\u00fdzkum genetick\u00e9 choroby\u00a0\u00a0"},"content":{"rendered":"\n

\u010cT 1\u00a0– Ud\u00e1losti

Dobr\u00fdm skutkem zakon\u010dili \u0161koln\u00ed rok \u017e\u00e1ci ze St\u011bbo\u0159ic na Opavsku. Charitou podpo\u0159ili hocha\u00a0posti\u017een\u00e9ho<\/strong>\u00a0vz\u00e1cnou nemoc\u00ed. Pen\u00edze pos\u00edlaj\u00ed na v\u00fdzkum Prader\u016fv-Williho syndromu. V \u010cesku j\u00edm trp\u00ed stovky lid\u00ed a l\u00e9k zat\u00edm neexistuje.

Prvn\u00ed kroky, v\u00fdznamn\u00fd miln\u00edk u 2,5let\u00e9ho Teodora. Chlapec se pot\u00fdk\u00e1 s genetick\u00fdm onemocn\u011bn\u00edm, kv\u016fli nedostatku pot\u0159ebn\u00fdch hormon\u016f m\u00e1 zpomalen\u00fd v\u00fdvoj, oslaben\u00e9 svalstvo a za\u010d\u00edn\u00e1 m\u00edt zv\u00fd\u0161en\u00fd z\u00e1jem o j\u00eddlo. Nemoc toti\u017e vyvol\u00e1v\u00e1 neust\u00e1l\u00fd a siln\u00fd hlad.

Kate\u0159ina Goldsteinov\u00e1, Teodorova matka
——————–
Tohleto je jin\u00e1 \u00farove\u0148 hladu, proto\u017ee je spojen\u00e1 s t\u011bma poruchama chov\u00e1n\u00ed, tak\u017ee oni jsou schopn\u00fd sn\u00edst doma i kapsle od k\u00e1vy, zubn\u00ed pastu, zmra\u017een\u00e9 j\u00eddlo a i zbytky prost\u011b kr\u00e1st v obchod\u011b.

redaktorka \u010cT
——————–
Pacienti \u010dasto trp\u00ed \u00fazkost\u00ed, depres\u00ed i nadv\u00e1hou. Prader\u016fv-Williho syndrom zp\u016fsobuje porucha na patn\u00e1ct\u00e9m chromozomu. Rodina oslovila sv\u011btov\u011b uzn\u00e1van\u00e9ho v\u011bdce Radislava Sedl\u00e1\u010dka a za\u010dala sama finan\u010dn\u011b podporovat v\u00fdzkum l\u00e9ku.

Martin Goldstein, Teodor\u016fv otec
——————–
Pokra\u010duje velice slibn\u011b, \u017ee v\u011bdci z Biocevu u\u017e jsou na stop\u011b kombinaci r\u016fzn\u00fdch l\u00e1tek, kter\u00e9 jsou schv\u00e1len\u00e9 na l\u00e9\u010dbu jin\u00fdch onemocn\u011bn\u00ed.

redaktorka \u010cT
——————–
Rodina proto zalo\u017eila nada\u010dn\u00ed fond Epigenteo a z\u00e1rove\u0148 sb\u00edrku. Ve\u0161ker\u00e9 pen\u00edze jdou na v\u00fdzkum tohoto vz\u00e1cn\u00e9ho onemocn\u011bn\u00ed. P\u0159\u00edb\u011bh Theodora z Liberce zaujal studenty na Opavsku, ve \u0161kole uspo\u0159\u00e1dali pala\u010dinkov\u00fd den, sami vyr\u00e1b\u011bli j\u00eddlo a prod\u00e1vali ho ostatn\u00edm.

Karol\u00edna Chovancov\u00e1, \u017e\u00e1kyn\u011b \u00ed. t\u0159\u00eddy, Z\u0160 St\u011bbo\u0159ice
——————–
Zapojili se jak u\u010ditel\u00e9, jak d\u011bti, tak v\u0161ichni okolo n\u00e1s, co\u017e bylo velmi suprov\u00e9. M\u011bli jsme z toho samoz\u0159ejm\u011b radost, kolik se toho vybralo, a je hodn\u011b p\u0159\u00edb\u011bh\u016f, tak jsme byli r\u00e1di, \u017ee jsme alespo\u0148 jednomu pomohli.

Jana Kabalov\u00e1, u\u010ditelka, Z\u0160 St\u011bbo\u0159ice
——————–
Z\u00e1rove\u0148 jsem py\u0161n\u00e1 taky na v\u0161echny d\u011bti na t\u00e9hlet\u00e9 \u0161kole a na jejich rodi\u010de ka\u017ed\u00fd z t\u011bch rodi\u010d\u016f poslal n\u011bjak\u00e9 pen\u00edzky. P\u0159ich\u00e1zeli n\u00e1m vaj\u00ed\u010dka, d\u00e1vali n\u00e1m mouku.

redaktorka \u010cT
——————–
Vybrali p\u0159es 33 000. Pr\u00e1v\u011b tento dar Goldsteinovy mimo\u0159\u00e1dn\u011b pot\u011b\u0161il.

Martin Goldstein, Teodor\u016fv otec
——————–
V prvn\u00ed \u0159ad\u011b to bylo obrovsk\u00e9 dojet\u00ed, jako \u00fapln\u011b jako velmi velk\u00e9 a potom radost, \u017ee jo, takov\u00e9to uzn\u00e1n\u00ed pr\u00e1v\u011b k jejich \u00fasil\u00ed.

redaktorka \u010cT
——————–
Theodorovi lze zat\u00edm pod\u00e1vat jen r\u016fstov\u00fd hormon. Ve v\u00fdvoji mu pom\u00e1haj\u00ed pravideln\u00e9 rehabilitace.<\/p>\n\n\n\n

\u010cesk\u00e1 televize.
<\/p>\n","protected":false},"excerpt":{"rendered":"

\u010cT 1\u00a0– Ud\u00e1losti Dobr\u00fdm skutkem zakon\u010dili \u0161koln\u00ed rok \u017e\u00e1ci ze St\u011bbo\u0159ic na Opavsku. Charitou podpo\u0159ili hocha\u00a0posti\u017een\u00e9ho\u00a0vz\u00e1cnou nemoc\u00ed. Pen\u00edze pos\u00edlaj\u00ed na v\u00fdzkum Prader\u016fv-Williho syndromu. V \u010cesku […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":14680,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[7],"tags":[],"class_list":["post-50285","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-spolecnost"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/50285","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=50285"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/50285\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/14680"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=50285"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=50285"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=50285"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}