{"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\/tr\/lgmd2d\/2020\/10\/26\/organization-stichting-spierkracht\/","title":{"rendered":"ORGAN\u0130ZASYON: Stichting Spierkracht"},"content":{"rendered":"

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

LGMD ORGANI\u0307ZASYONU:\u00a0 \u00a0\u00a0\u00a0 <\/strong>Stichting Spierkracht<\/p>\n

WEB S\u0130TES\u0130:<\/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

KURULU\u015eUNUZ HANGI\u0307 LGMD ALT TI\u0307PI\u0307NE ODAKLANIYOR:\u00a0 <\/strong><\/p>\n

LGMD2D \/ R3 Alfa Sarkoglikan ile ili\u015fkili<\/p>\n

BIR ALT T\u00dcRE ODAKLANIRSANIZ, BIR KAYIT DEFTERI VAR MI VE HASTALAR NASIL KATILABILIR? <\/strong><\/p>\n

T\u00fcm LGMD2D hastalar\u0131na kay\u0131t yapt\u0131rmalar\u0131n\u0131 tavsiye ediyoruz: https:\/\/lgmd2d.org\/patient-resources\/register\/. DNA ile do\u011frulanm\u0131\u015f bir tan\u0131ya sahip olmak \u00e7ok \u00f6nemlidir. Mutasyonunuz do\u011frulanmazsa, bu durum t\u0131bbi tedavinizi etkileyebilir.<\/p>\n

Kurulu\u015funuz Kar Amac\u0131 G\u00fctmeyen bir kurulu\u015f mu? E\u011fer \u00f6yleyse, ne t\u00fcr:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n

Evet, biz Hollanda merkezli kar amac\u0131 g\u00fctmeyen bir kurulu\u015fuz. Sadece g\u00f6n\u00fcll\u00fclerimiz var ve genel giderlerimiz yok.<\/p>\n

KURULU\u015eUNUZUN KURULMASINA NE I\u0307LHAM VERDI\u0307?<\/strong>:<\/p>\n

SpierKracht'\u0131n temelini bir Noel hediyesi olarak ald\u0131k. O\u011flumuza 2006 y\u0131l\u0131nda LGMD2d te\u015fhisi kondu. B\u00fcy\u00fck k\u0131z\u0131m\u0131z\u0131 kalp hastal\u0131\u011f\u0131ndan kaybetti\u011fimiz i\u00e7in \u00e7ocuklar\u0131m\u0131z i\u00e7in her \u015feyi yapmaya kararl\u0131yd\u0131k ve y\u0131llarca en iyi \u00e7ocuk hastanesine gittik. Arkada\u015flar masraflar\u0131 kar\u015f\u0131lamak i\u00e7in maraton vb. etkinliklerle para toplad\u0131lar ve biz de yard\u0131m ama\u00e7l\u0131 ziyafetler d\u00fczenledik.<\/p>\n

KURULU\u015eUNUZUN MISYONU NEDIR?<\/strong><\/p>\n

T\u00fcm hastalar en iyi bak\u0131m\u0131 hak eder, bu nedenle Hollanda'da LGMD2D te\u015fhisi konan t\u00fcm hastalara ve ailelerine ula\u015fmaya karar verdik. Temel olarak Fark\u0131ndal\u0131k, e\u011fitim, sorun \u00e7\u00f6zme ve bir denemeye kaydolmadan \u00f6nce bilmeniz gereken her \u015feye odaklan\u0131yoruz. Hollanda \u00e7ok k\u00fc\u00e7\u00fck bir \u00fclke oldu\u011fu ve LGMD2D ger\u00e7ekten nadir g\u00f6r\u00fcld\u00fc\u011f\u00fc i\u00e7in k\u00fcresel olarak ula\u015f\u0131yoruz. Yak\u0131n zamanda \u00fc\u00e7 farkl\u0131 k\u0131tada LGMD ile ya\u015fayan \u00fc\u00e7 ki\u015fi hakk\u0131nda bir video haz\u0131rlad\u0131k.<\/p>\n

KURULU\u015eUNUZ HANGI HIZMETLERI SA\u011eLIYOR:<\/strong><\/p>\n

LGMD2D'li hasta yak\u0131nlar\u0131 i\u00e7in hastalar\u0131n ya\u015famlar\u0131n\u0131n farkl\u0131 a\u015famalar\u0131ndaki t\u00fcm uygun konularda g\u00fcvenilir bilgiler. Ayr\u0131ca bir kalifiye hasta uzman\u0131m\u0131z var ve sadece Hollandal\u0131 hastalar i\u00e7in de\u011fil, d\u00fcnya \u00e7ap\u0131nda erken te\u015fhis ve hasta dan\u0131\u015fmanl\u0131\u011f\u0131 konusunda \u00e7al\u0131\u015f\u0131yoruz.<\/p>\n

KURULU\u015eUNUZUN EN \u00c7OK GURUR DUYDU\u011eU \u015eEY NEDIR?<\/strong><\/p>\n

Tan\u0131d\u0131\u011f\u0131m\u0131z t\u00fcm insanlarla, LGMD2D te\u015fhisi ile ya\u015fayan ailelerle gurur duyuyoruz, ancak ayn\u0131 zamanda hayatlar\u0131n\u0131 bir tedavi bulmaya ve hastalar i\u00e7in en iyi bak\u0131m\u0131 sa\u011flamaya adayan t\u00fcm insanlarla da gurur duyuyoruz. Do\u011fru te\u015fhis bir gen denemesine kap\u0131 a\u00e7t\u0131 ve tedaviyi d\u00f6rt g\u00f6zle bekliyoruz. O zamana kadar ailelere pratik rehberlik etmek i\u00e7in her \u015feyi yapaca\u011f\u0131z ama ayn\u0131 zamanda bir tedavi ve k\u00fcresel eri\u015fim sa\u011flaman\u0131n yolunu a\u00e7aca\u011f\u0131z.<\/p>\n

D\u00fcnyan\u0131n KURULU\u015eUNUZ hakk\u0131nda ne bilmesini istersiniz?<\/strong>:<\/p>\n

LGMD2D te\u015fhisini almak d\u00fcnyan\u0131n sonu de\u011fildir. Zorluklarla dolu bir yolculuktur, ancak bununla birlikte harika bir LGMD2D toplulu\u011funa sahip olursunuz. Hastal\u0131k her hastada farkl\u0131 \u015fekilde ortaya \u00e7\u0131ksa da pek \u00e7ok ortak noktam\u0131z var ve her \u015feyi birlikte yapabiliriz. Hastal\u0131\u011f\u0131n sizi tan\u0131mlamas\u0131na veya s\u0131n\u0131rlamas\u0131na izin vermeyin. Siz kimseniz osunuz ve hala hayallerinizin pe\u015finden ko\u015fuyorsunuz.<\/p>\n

\u0130NSANLAR KURULU\u015eUNUZU DESTEKLEMEYE NASIL DAHIL OLABILIRLER?<\/strong><\/p>\n

Her zaman bir ba\u011f\u0131\u015f toplama etkinli\u011fi d\u00fczenlemek isteyen arkada\u015flar ar\u0131yoruz. Pandemi nedeniyle,<\/p>\n

Ailelerin \u00e7o\u011fu tecrit edilmi\u015f durumda ve koronavir\u00fcs nedeniyle 2020 y\u0131l\u0131nda y\u0131ll\u0131k yeme\u011fimizi d\u00fczenleyemedik. B\u00fcy\u00fck ya da k\u00fc\u00e7\u00fck her t\u00fcrl\u00fc ba\u011f\u0131\u015f, LGMD2D'li ailelerin t\u0131bbi bak\u0131m ya da \u00f6rne\u011fin evlerinde yap\u0131lacak uyarlamalar i\u00e7in finansman sa\u011flamalar\u0131na yard\u0131mc\u0131 olmak amac\u0131yla kullan\u0131lacakt\u0131r.<\/p>\n

KURULU\u015eUNUZLA ILETI\u015eIME GE\u00c7MENIN EN IYI YOLU NEDIR?<\/strong><\/p>\n

Hasta uzman\u0131m\u0131za stichtingspierkracht@ziggo.nl adresinden e-posta g\u00f6nderin veya web sitemizdeki ileti\u015fim formumuzu doldurun: http:\/\/stichtingspierkracht.com\/<\/p>\n

EKLEMEK ISTEDI\u011eINIZ BA\u015eKA BIR \u015eEY VAR MI?<\/strong><\/p>\n

10 y\u0131l \u00f6nce hi\u00e7bir tedavi mevcut de\u011fildi ve doktorlar sadece hastal\u0131\u011f\u0131n ilerleyi\u015fini takip ediyordu. Profes\u00f6r Jerry Mendell'in 2015 y\u0131l\u0131nda LGMD2D i\u00e7in yapt\u0131\u011f\u0131 gen denemesi olumlu sonu\u00e7lar verdi ve \u015fimdi LGMD2 A, B, C, E ve I i\u00e7in de umut verici ara\u015ft\u0131rmalar var. Yak\u0131n gelecekte bir yerlerde genetik tedavinin herkese sunuldu\u011fu bir zaman\u0131 d\u00f6rt g\u00f6zle bekliyorum ve kim bilir n\u00f6rom\u00fcsk\u00fcler alan bir 10 y\u0131l sonra nerede olacak. Ancak 2020'de hala hastalara tan\u0131 koyan ancak gen tedavisi de dahil olmak \u00fczere ilerleyen ara\u015ft\u0131rmalardan bahsetmeyen doktorlar var. Tedaviniz tamamen sizinle ilgilidir, uzman olun ve her t\u00fcr LGMD i\u00e7in bir Topluluk Dan\u0131\u015fma Kurulu \u00fcyesiyle ba\u011flant\u0131 kurun.<\/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\/tr\/lgmd2d\/2020\/10\/26\/organization-stichting-spierkracht\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"ORGANIZATION: Stichting Spierkracht - 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