{"id":40109,"date":"2023-06-08T18:09:38","date_gmt":"2023-06-08T16:09:38","guid":{"rendered":"https:\/\/www.invarena.cz\/?p=40109"},"modified":"2023-06-08T18:16:10","modified_gmt":"2023-06-08T16:16:10","slug":"z-voziku-na-motorku-asociace-muskularnich-dystrofiku-se-zucastni-mda-ride","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=40109","title":{"rendered":"Z voz\u00edku na motorku. Asociace muskul\u00e1rn\u00edch dystrofik\u016f se z\u00fa\u010dastn\u00ed MDA RIDE"},"content":{"rendered":"\n

Spanil\u00e1 j\u00edzda Prahou, koncerty, dobr\u00e9 j\u00eddlo a pit\u00ed, ale tak\u00e9 dobro\u010dinnost letos popatn\u00e1ct\u00e9 spoj\u00ed majitele motocykl\u016f zna\u010dky Harley Davidson a pacientsk\u00e9 organizace sdru\u017euj\u00edc\u00ed lidi se svalovou dystrofi\u00ed. Nejv\u011bt\u0161\u00ed charitativn\u00ed motork\u00e1\u0159sk\u00e9 akce MDA RIDE se letos op\u011bt z\u00fa\u010dastn\u00ed tak\u00e9 Asociace muskul\u00e1rn\u00edch dystrofik\u016f v \u010cR. Jej\u00edmi \u010dleny jsou p\u0159ev\u00e1\u017en\u011b dosp\u011bl\u00ed lid\u00e9, kte\u0159\u00ed se i p\u0159es limituj\u00edc\u00ed onemocn\u011bn\u00ed sna\u017e\u00ed \u017e\u00edt naplno.<\/strong><\/p>\n\n\n\n

\u201eAMD sdru\u017euje p\u0159ibli\u017en\u011b t\u0159i stovky lid\u00ed s r\u016fzn\u00fdmi typy nervosvalov\u00fdch onemocn\u011bn\u00ed \u2013 tedy nemoc\u00ed, p\u0159i kter\u00fdch postupn\u011b p\u0159est\u00e1vaj\u00ed fungovat svaly. D\u00edky r\u016fzn\u00fdm kompenza\u010dn\u00edm pom\u016fck\u00e1m a p\u0159edev\u0161\u00edm pomoci na\u0161ich bl\u00edzk\u00fdch a asistent\u016f, m\u016f\u017eeme i na voz\u00edku a s r\u016fzn\u00fdmi limity cestovat, studovat, pracovat, “ \u0159\u00edk\u00e1 Veronika Nesm\u011br\u00e1kov\u00e1 (\u010dlenka v\u00fdkonn\u00e9ho v\u00fdboru).<\/p>\n\n\n\n

Mezi \u010dleny organizace tak jsou nap\u0159\u00edklad program\u00e1to\u0159i, \u00fa\u010detn\u00ed, p\u0159ekladatel\u00e9, korekto\u0159i nebo grafici. AMD tak\u00e9 po\u0159\u00e1d\u00e1 \u0161achov\u00e9 turnaje, rekondi\u010dn\u00ed pobyty v \u010cesku i zahrani\u010d\u00ed. \u201eZn\u00e1me p\u0159esn\u011b pot\u0159eby a mo\u017enosti lid\u00ed se svalovou dystrofi\u00ed a um\u00edme napl\u00e1novat program, kter\u00fd jim prosp\u00edv\u00e1. Krom\u011b rehabilitac\u00ed je p\u0159\u00ednosem i mo\u017enost opustit zn\u00e1m\u00e9 prost\u0159ed\u00ed, nav\u00e1zat nov\u00e9 soci\u00e1ln\u00ed kontakty,“ vypo\u010d\u00edt\u00e1v\u00e1 Nesm\u011br\u00e1kov\u00e1.<\/p>\n\n\n\n

Svou \u010dinnost\u00ed chce AMD p\u0159isp\u011bt k maxim\u00e1ln\u00edmu zapojen\u00ed lid\u00ed s nervosvalov\u00fdm onemocn\u011bn\u00edm do spole\u010dnosti, zvy\u0161ovat pov\u011bdom\u00ed ve\u0159ejnosti o t\u011bchto typech onemocn\u011bn\u00ed a prosazovat zlep\u0161en\u00ed p\u00e9\u010de. \u201eV \u010cesk\u00e9 republice je nejv\u011bt\u0161\u00ed probl\u00e9m dostupnost osobn\u00ed asistence. Je velmi n\u00e1kladn\u00e1 a z\u00e1rove\u0148 nen\u00ed dostatek lid\u00ed, kte\u0159\u00ed by ji poskytovali,“ up\u0159es\u0148uje Nesm\u011br\u00e1kov\u00e1.<\/p>\n\n\n\n

I proto se AMD opakovan\u011b \u00fa\u010dastn\u00ed i MDA RIDE, jej\u00ed\u017e v\u00fdt\u011b\u017eek se d\u011bl\u00ed mezi n\u011bkolik organizac\u00ed. \u201eJe to skv\u011bl\u00e1 akce, b\u011bhem kter\u00e9 m\u00e1me p\u0159\u00edle\u017eitost za\u017e\u00edt vzru\u0161uj\u00edc\u00ed j\u00edzdu na motork\u00e1ch a v autech, u\u017e\u00edt si dobrou hudbu, z\u00e1bavu, ob\u010derstven\u00ed. V\u00e1\u017e\u00edme si tak\u00e9 finan\u010dn\u00ed podpory, kter\u00e1 se pou\u017e\u00edv\u00e1 pr\u00e1v\u011b na osobn\u00ed asistenci, n\u00e1kup kompenza\u010dn\u00edch pom\u016fcek \u010di rehabilita\u010dn\u00ed pobyty,“ dod\u00e1v\u00e1 Nesm\u011br\u00e1kov\u00e1.<\/p>\n\n\n\n

Patn\u00e1ct\u00fd ro\u010dn\u00edk MDA RIDE, jej\u00edm\u017e inici\u00e1torem je Josef „K\u00e1\u010fa“ Kade\u0159\u00e1bek, se kon\u00e1 v sobotu 10. \u010dervna <\/strong>v Praze mezi budovami N\u00e1rodn\u00edho muzea na V\u00e1clavsk\u00e9m n\u00e1m\u011bst\u00ed. V p\u0159edchoz\u00edch ro\u010dn\u00edc\u00edch se d\u00edky n\u00ed rozd\u011blilo v\u00edce ne\u017e deset milion\u016f korun.<\/p>\n\n\n\n

\"\"<\/figure>\n\n\n\n

MDA RIDE<\/strong><\/p>\n\n\n\n

MDA RIDE je neziskov\u00e1 organizace, kter\u00e1 si klade za c\u00edl poskytovat podporu lidem se svalovou dystrofi\u00ed. Po\u0159\u00e1d\u00e1me nejv\u011bt\u0161\u00ed motocyklovou charitativn\u00ed akci v \u010cesku a ve\u0159ejnou sb\u00edrku, jejich\u017e v\u00fdt\u011b\u017eek pou\u017e\u00edv\u00e1me na individu\u00e1ln\u00ed pomoc lidem se svalovou dystrofi\u00ed, kter\u00e9 sdru\u017euj\u00ed Asociace muskul\u00e1rn\u00edch dystrofik\u016f v \u010cR, Parent Project, SMART-HELP, End Duchenne, SM\u00c1ci, a na podporu \u010dinnosti t\u011bchto organizac\u00ed.<\/p>\n\n\n\n

\nhttps:\/\/mdaride.cz\/domu\/\n<\/div><\/figure>\n\n\n\n

Asociace muskul\u00e1rn\u00edch dystrofik\u016f v \u010cR<\/strong><\/p>\n\n\n\n

Pacientsk\u00e1 organizace AMD sdru\u017euje a podporuje lidi se svalovou dystrofi\u00ed a jin\u00fdmi nervosvalov\u00fdmi onemocn\u011bn\u00edmi. Pom\u00e1h\u00e1 jim integrovat se do spole\u010dnosti, poskytuje pot\u0159ebn\u00e9 informace k udr\u017een\u00ed co nejlep\u0161\u00ed kvality \u017eivota a prosazuje zlep\u0161en\u00ed multidisciplin\u00e1rn\u00ed p\u00e9\u010de. Prov\u00e1d\u00ed osv\u011btovou \u010dinnost a po\u0159\u00e1d\u00e1 rekondi\u010dn\u00ed pobyty a sportovn\u00ed akce.<\/p>\n\n\n\n

<\/p>\n","protected":false},"excerpt":{"rendered":"

Spanil\u00e1 j\u00edzda Prahou, koncerty, dobr\u00e9 j\u00eddlo a pit\u00ed, ale tak\u00e9 dobro\u010dinnost letos popatn\u00e1ct\u00e9 spoj\u00ed majitele motocykl\u016f zna\u010dky Harley Davidson a pacientsk\u00e9 organizace sdru\u017euj\u00edc\u00ed lidi se […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":40110,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[17],"tags":[],"class_list":["post-40109","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-kultura"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/40109","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=40109"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/40109\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/40110"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=40109"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=40109"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=40109"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}