{"id":3732,"date":"2020-10-26T21:27:47","date_gmt":"2020-10-27T02:27:47","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3732"},"modified":"2024-02-09T14:24:27","modified_gmt":"2024-02-09T14:24:27","slug":"organization-stichting-spierkracht","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/lgmd2d\/2020\/10\/26\/organization-stichting-spierkracht\/","title":{"rendered":"ORGANIZACJA: Stichting Spierkracht"},"content":{"rendered":"

\"\"<\/a><\/p>\n

ORGANIZACJA LGMD:\u00a0 \u00a0\u00a0\u00a0 <\/strong>Stichting Spierkracht<\/p>\n

STRONA INTERNETOWA:<\/strong>\u00a0 \u00a0www.stichtingSpierKracht.com<\/a><\/p>\n

FACEBOOK:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong>https:\/\/www.facebook.com\/stichtingspierkracht.nl<\/a><\/p>\n

INSTAGRAM:\u00a0\u00a0\u00a0\u00a0 <\/strong> https:\/\/www.instagram.com\/stichting_spierkracht<\/a><\/p>\n

NA JAKIM PODTYPIE LGMD KONCENTRUJE SI\u0118 TWOJA ORGANIZACJA:\u00a0 <\/strong><\/p>\n

Skupiamy si\u0119 na LGMD2D \/ R3 zwi\u0105zanym z alfa-sarkoglikanem<\/p>\n

JE\u015aLI KONCENTRUJESZ SI\u0118 NA PODTYPIE, CZY ISTNIEJE REJESTR I W JAKI SPOS\u00d3B PACJENCI MOG\u0104 DO NIEGO DO\u0141\u0104CZY\u0106? <\/strong><\/p>\n

Zalecamy wszystkim pacjentom z LGMD2D zarejestrowanie si\u0119: https:\/\/lgmd2d.org\/patient-resources\/register\/. Bardzo wa\u017cne jest, aby mie\u0107 diagnoz\u0119 potwierdzon\u0105 DNA. Je\u015bli mutacja nie zostanie potwierdzona, mo\u017ce to mie\u0107 wp\u0142yw na leczenie.<\/p>\n

Czy Twoja organizacja jest organizacj\u0105 non-profit? Je\u015bli tak, to jakiego typu:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n

Tak, jeste\u015bmy organizacj\u0105 non-profit z siedzib\u0105 w Holandii. Mamy tylko wolontariuszy i nie mamy \u017cadnych koszt\u00f3w og\u00f3lnych.<\/p>\n

CO ZAINSPIROWA\u0141O POWSTANIE TWOJEJ ORGANIZACJI?<\/strong>:<\/p>\n

Fundacj\u0119 SpierKracht dostali\u015bmy w prezencie \u015bwi\u0105tecznym. U naszego syna zdiagnozowano LGMD2d w 2006 roku. Poniewa\u017c stracili\u015bmy nasz\u0105 najstarsz\u0105 c\u00f3rk\u0119 z powodu choroby serca, byli\u015bmy zdeterminowani, aby zrobi\u0107 wszystko dla naszych dzieci i przez wiele lat podr\u00f3\u017cowali\u015bmy do najlepszego szpitala dzieci\u0119cego. Przyjaciele zbierali pieni\u0105dze na maratonach itp., aby pokry\u0107 koszty, a my organizowali\u015bmy bankiety charytatywne.<\/p>\n

JAKA JEST MISJA ORGANIZACJI:<\/strong><\/p>\n

Wszyscy pacjenci zas\u0142uguj\u0105 na najlepsz\u0105 opiek\u0119, dlatego postanowili\u015bmy dotrze\u0107 do wszystkich pacjent\u00f3w i ich rodzin, u kt\u00f3rych zdiagnozowano LGMD2D w Holandii. Skupiamy si\u0119 g\u0142\u00f3wnie na u\u015bwiadamianiu, edukacji, rozwi\u0105zywaniu problem\u00f3w i wszystkim, co nale\u017cy wiedzie\u0107 przed zapisaniem si\u0119 na badanie. Poniewa\u017c Holandia jest bardzo ma\u0142ym krajem, a LGMD2D jest naprawd\u0119 rzadk\u0105 chorob\u0105, nasze dzia\u0142ania maj\u0105 zasi\u0119g globalny. Niedawno nagrali\u015bmy film o trzech osobach \u017cyj\u0105cych z LGMD na trzech r\u00f3\u017cnych kontynentach.<\/p>\n

JAKIE US\u0141UGI \u015aWIADCZY TWOJA ORGANIZACJA:<\/strong><\/p>\n

Wiarygodne informacje dla najbli\u017cszych krewnych pacjenta z LGMD2D na wszystkie odpowiednie tematy na r\u00f3\u017cnych etapach \u017cycia pacjent\u00f3w. Mamy r\u00f3wnie\u017c jednego wykwalifikowanego eksperta ds. pacjent\u00f3w i pracujemy nad wczesn\u0105 diagnoz\u0105 i doradztwem dla pacjent\u00f3w nie tylko dla pacjent\u00f3w holenderskich, ale na ca\u0142ym \u015bwiecie.<\/p>\n

Z CZEGO TWOJA ORGANIZACJA JEST NAJBARDZIEJ DUMNA?<\/strong><\/p>\n

Jeste\u015bmy bardzo dumni ze wszystkich ludzi, kt\u00f3rych znamy, rodzin \u017cyj\u0105cych z diagnoz\u0105 LGMD2D, ale jeste\u015bmy r\u00f3wnie\u017c bardzo dumni ze wszystkich ludzi, kt\u00f3rzy po\u015bwi\u0119caj\u0105 swoje \u017cycie na znalezienie lekarstwa i zapewnienie najlepszej opieki pacjentom. W\u0142a\u015bciwa diagnoza otworzy\u0142a nam drzwi do bada\u0144 nad genami i z niecierpliwo\u015bci\u0105 czekamy na leczenie. Do tego czasu zrobimy wszystko, aby zapewni\u0107 rodzinom praktyczn\u0105 pomoc, ale tak\u017ce utorowa\u0107 drog\u0119 do zapewnienia leczenia i globalnego dost\u0119pu.<\/p>\n

Co chcesz, aby \u015bwiat dowiedzia\u0142 si\u0119 o TWOJEJ ORGANIZACJI?<\/strong>:<\/p>\n

Zdiagnozowanie LGMD2D to nie koniec \u015bwiata. Jest to podr\u00f3\u017c pe\u0142na wyzwa\u0144, ale wraz z ni\u0105 pojawia si\u0119 wspania\u0142a spo\u0142eczno\u015b\u0107 LGMD2D. Choroba objawia si\u0119 inaczej u ka\u017cdego pacjenta, ale mamy wiele wsp\u00f3lnego i mo\u017cemy zrobi\u0107 wszystko razem. Nie pozw\u00f3l, aby choroba Ci\u0119 definiowa\u0142a lub ogranicza\u0142a. Jeste\u015b tym, kim jeste\u015b i nadal realizuj swoje marzenia.<\/p>\n

W JAKI SPOS\u00d3B LUDZIE MOG\u0104 ZAANGA\u017bOWA\u0106 SI\u0118 WE WSPIERANIE ORGANIZACJI:<\/strong><\/p>\n

Zawsze szukamy przyjaci\u00f3\u0142, kt\u00f3rzy chc\u0105 zorganizowa\u0107 zbi\u00f3rk\u0119 pieni\u0119dzy. Ze wzgl\u0119du na pandemi\u0119,<\/p>\n

Wi\u0119kszo\u015b\u0107 rodzin przebywa w izolacji, a z powodu koronawirusa nie byli\u015bmy w stanie zorganizowa\u0107 naszego corocznego bankietu w 2020 roku. Ka\u017cda darowizna, du\u017ca lub ma\u0142a, zostanie wykorzystana na pomoc rodzinom z LGMD2D w finansowaniu opieki medycznej lub, na przyk\u0142ad, adaptacji ich dom\u00f3w.<\/p>\n

JAKI JEST NAJLEPSZY SPOS\u00d3B KONTAKTU Z ORGANIZACJ\u0104:<\/strong><\/p>\n

Napisz do naszego eksperta ds. pacjent\u00f3w na adres stichtingspierkracht@ziggo.nl lub wype\u0142nij formularz kontaktowy na naszej stronie internetowej: http:\/\/stichtingspierkracht.com\/.<\/p>\n

CZY JEST CO\u015a JESZCZE, CO CHCIA\u0141BY\u015a DODA\u0106?<\/strong><\/p>\n

10 lat temu nie by\u0142o dost\u0119pnego leczenia, a lekarze po prostu obserwowali post\u0119p choroby. Jerry'ego Mendella w 2015 roku przynios\u0142y pozytywne wyniki w przypadku LGMD2D, a obecnie prowadzone s\u0105 r\u00f3wnie\u017c obiecuj\u0105ce badania nad LGMD2 A, B, C, E i I. Z niecierpliwo\u015bci\u0105 czekam na jaki\u015b czas, gdzie\u015b w niedalekiej przysz\u0142o\u015bci, kiedy leczenie genetyczne b\u0119dzie dost\u0119pne dla ka\u017cdego i kto wie, gdzie b\u0119dzie dziedzina nerwowo-mi\u0119\u015bniowa za kolejne 10 lat. Ale w 2020 roku nadal istniej\u0105 lekarze, kt\u00f3rzy stawiaj\u0105 pacjentom diagnoz\u0119, ale nie informuj\u0105 ich o post\u0119pach w badaniach, w tym terapii genowej. Twoje leczenie zale\u017cy wy\u0142\u0105cznie od Ciebie, zosta\u0144 ekspertem i skontaktuj si\u0119 z cz\u0142onkiem Community Advisory Board dla ka\u017cdego rodzaju LGMD.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":1,"featured_media":4499,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[94,28,95],"tags":[],"class_list":["post-3732","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-organization-interview","category-lgmd2d","category-organization"],"acf":[],"yoast_head":"\nORGANIZATION: Stichting Spierkracht - LGMD Awareness Foundation<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.lgmd-info.org\/pl\/lgmd2d\/2020\/10\/26\/organization-stichting-spierkracht\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"ORGANIZATION: Stichting Spierkracht - 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