{"id":1798,"date":"2018-04-15T12:03:25","date_gmt":"2018-04-15T17:03:25","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1798"},"modified":"2018-04-15T12:03:25","modified_gmt":"2018-04-15T17:03:25","slug":"coalition-to-cure-calpain-3","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/lgmd2a\/2018\/04\/15\/coalition-to-cure-calpain-3\/","title":{"rendered":"ORGANIZACJA: Koalicja na rzecz leczenia kalpainy 3"},"content":{"rendered":"<figure class=\"wp-block-image\"><img decoding=\"async\" src=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27960%27%20height%3D%27720%27%20viewBox%3D%270%200%20960%20720%27%3E%3Crect%20width%3D%27960%27%20height%3D%27720%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2019\/10\/Coalition-to-Cure-Calpain-3-v2.png\" alt=\"\" class=\"lazyload wp-image-2874\"\/><\/figure>\n\n\n<p><strong>NAZWA ORGANIZACJI<\/strong>:         Coalition to Cure Calpain 3<\/p>\n<p><strong>STRONA INTERNETOWA:<\/strong>\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <a href=\"http:\/\/www.curecalpain3.org\/\">CureCalpain3.org<\/a><\/p>\n<p><strong>FACEBOOK:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><a href=\"https:\/\/www.facebook.com\/CureCalpain3\/\">Coalition to Cure Calpain 3: Przezwyci\u0119\u017cenie LGMD2A\/kalpainopatii<\/a><\/p>\n<p><strong>Twitter:\u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0<\/strong><a href=\"https:\/\/twitter.com\/curecalpain3\">@CureCalpain3<\/a><\/p>\n<p>\u00a0<\/p>\n<p><strong>NA JAKIM PODTYPIE LGMD KONCENTRUJE SI\u0118 TWOJA ORGANIZACJA:\u00a0 <\/strong><\/p>\n<p>LGMD2A, posta\u0107 kalpainopatii<\/p>\n<p><strong>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<p>Tak, prowadzimy globalny rejestr pacjent\u00f3w z LGMD2A.  Mo\u017cna \u0142atwo zarejestrowa\u0107 si\u0119 na stronie <a href=\"http:\/\/www.lgmd2a.org\">www.lgmd2a.org<\/a><\/p>\n<p><strong>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<p>Tak, jeste\u015bmy ameryka\u0144sk\u0105 organizacj\u0105 charytatywn\u0105 501 (c)(3) zwolnion\u0105 z podatku.<\/p>\n<p><strong>CO ZAINSPIROWA\u0141O POWSTANIE TWOJEJ ORGANIZACJI?<\/strong>:<\/p>\n<p>Coalition to Cure Calpain 3 (C3) zosta\u0142a za\u0142o\u017cona w 2010 roku w konkretnym celu finansowania wysi\u0142k\u00f3w badawczych skoncentrowanych na zrozumieniu biologii i znalezieniu lekarstwa na LGMD2A, form\u0119 kalpainopatii. Organizacja ta zosta\u0142a stworzona przez pacjent\u00f3w i ich rodziny, kt\u00f3rzy byli sfrustrowani brakiem wiedzy na temat choroby i faktem, \u017ce prowadzono bardzo niewiele bada\u0144. Niekt\u00f3rym z nas nawet postawienie konkretnej diagnozy zaj\u0119\u0142o dziesi\u0119ciolecia.  Nasz\u0105 motywacj\u0105 jest ch\u0119\u0107 zach\u0119cania do wsp\u00f3\u0142pracy naukowc\u00f3w, os\u00f3b cierpi\u0105cych na LGMD2A, ich rodzin i przyjaci\u00f3\u0142 oraz ca\u0142ej spo\u0142eczno\u015bci, aby po\u0142o\u017cy\u0107 kres tej niedostatecznie zbadanej i niedofinansowanej \"sierocej\" chorobie.<\/p>\n<p><strong>JAKA JEST MISJA ORGANIZACJI:<\/strong><\/p>\n<p>C3 jest zaanga\u017cowana w leczenie i ostatecznie wyleczenie dystrofii mi\u0119\u015bniowej obr\u0119czy ko\u0144czyn typu 2A (LGMD2A), formy kalpainopatii. Nasz\u0105 misj\u0105 jest finansowanie bada\u0144 o wysokim potencjale i pr\u00f3b klinicznych oraz edukowanie globalnej spo\u0142eczno\u015bci na temat tej choroby.<\/p>\n<p><strong>JAKIE US\u0141UGI \u015aWIADCZY TWOJA ORGANIZACJA:<\/strong><\/p>\n<p>- Finansowanie bada\u0144 skoncentrowanych na LGMD2A \/ kalpainopatii<\/p>\n<p>- Prowadzenie globalnego rejestru pacjent\u00f3w z LGMD2A\/kalpainopati\u0105<\/p>\n<p>- Edukowanie globalnej spo\u0142eczno\u015bci (w tym spo\u0142eczno\u015bci naukowej, pacjent\u00f3w, ich rodzin i og\u00f3\u0142u spo\u0142ecze\u0144stwa) na temat choroby za po\u015brednictwem naszej strony internetowej, medi\u00f3w spo\u0142eczno\u015bciowych, obecno\u015bci na konferencjach naukowych i komunikacji e-mailowej.<\/p>\n<p>- Zapewnienie forum wsparcia dla pacjent\u00f3w i ich rodzin na Facebooku (<a href=\"\/pl\/carol@curecalpain3.org\/\">email C3 Dyrektor ds. kontakt\u00f3w z pacjentami Carol Abraham<\/a> do\u0142\u0105czy\u0107)<\/p>\n<p><strong>Z CZEGO TWOJA ORGANIZACJA JEST NAJBARDZIEJ DUMNA?<\/strong><\/p>\n<p>Jeste\u015bmy najbardziej dumni z faktu, \u017ce uda\u0142o nam si\u0119 przyci\u0105gn\u0105\u0107 i wesprze\u0107 naukowc\u00f3w wysokiego kalibru, aby pobudzi\u0107 badania nad kalpainopati\u0105. Dr Melissa Spencer przewodzi\u0142a naszej Naukowej Radzie Doradczej od momentu jej powstania w 2010 roku, wsp\u00f3\u0142pracuj\u0105c z doktorami Kevinem Campbellem, Erikiem Hoffmanem i Lou Kunkelem. Dr Jennifer Levy do\u0142\u0105czy\u0142a do nas jako pierwszy dyrektor naukowy C3 w 2016 roku i ponad dwukrotnie zwi\u0119kszy\u0142a liczb\u0119 finansowanych przez nas projekt\u00f3w badawczych. Fakt, \u017ce nasza fundacja, kt\u00f3ra pocz\u0105tkowo by\u0142a tylko pomys\u0142em na zmian\u0119, przeznaczy\u0142a prawie $1,5 miliona dolar\u00f3w na badania nad kalpainopati\u0105 prowadzone przez czo\u0142owych naukowc\u00f3w - dr Michele Calos, Lou Kunkel, Cathleen Lutz, Rita Perlingeiro, Isabelle Richard, Melissa Spencer, Volker Straub - jest dla nas powodem do dumy.<\/p>\n<p><strong>Co chcesz, aby \u015bwiat dowiedzia\u0142 si\u0119 o TWOJEJ ORGANIZACJI?<\/strong>:<\/p>\n<p>Niedawno uruchomili\u015bmy Inicjatyw\u0119 Terapii Genowej, kt\u00f3ra ma na celu przyspieszenie zrozumienia terapii genowej jako metody leczenia LGMD2A poprzez finansowanie bada\u0144 nad wieloma metodami terapii genowej. Je\u015bli wyniki kt\u00f3regokolwiek z obecnych lub przysz\u0142ych projekt\u00f3w badawczych Gene Therapy Initiative b\u0119d\u0105 pozytywne, mog\u0105 one zosta\u0107 wykorzystane do rozpocz\u0119cia bada\u0144 klinicznych u pacjent\u00f3w z LGMD2A. B\u0105d\u017a na bie\u017c\u0105co z naszymi og\u0142oszeniami, poniewa\u017c nadal finansujemy nowe projekty. <a href=\"http:\/\/www.curecalpain3.org\/research\">http:\/\/www.curecalpain3.org\/research<\/a><\/p>\n<p><strong>W JAKI SPOS\u00d3B LUDZIE MOG\u0104 ZAANGA\u017bOWA\u0106 SI\u0118 WE WSPIERANIE ORGANIZACJI:<\/strong><\/p>\n<p>Doprowadzenie terapii z laboratorium badawczego do bada\u0144 klinicznych to d\u0142ugi i kosztowny proces. Najwa\u017cniejszym sposobem, w jaki ludzie mog\u0105 wesprze\u0107 misj\u0119 naszej organizacji, jest przekazanie darowizny. Ka\u017cdy dolar robi r\u00f3\u017cnic\u0119 w naszych wysi\u0142kach na rzecz wyleczenia tej wyniszczaj\u0105cej mi\u0119\u015bnie choroby.<\/p>\n<p>Darczy\u0144cy mog\u0105 przekazywa\u0107 darowizny na trzy sposoby:<\/p>\n<p>&#8211; <a href=\"https:\/\/donatenow.networkforgood.org\/C3\">nasza strona internetowa<\/a> (online)<\/p>\n<p>- nasz <a href=\"https:\/\/www.crowdrise.com\/o\/en\/campaign\/c3-gene-therapy-initiative\/coalitiontocurecalpa\">Kampania Crowdrise<\/a> (online)<\/p>\n<p>- poczt\u0105 za po\u015brednictwem czeku (offline)<\/p>\n<p><a href=\"\/pl\/info@curecalpain3.org\/\">napisz do nas<\/a> i poprosi\u0107 o formularz darowizny lub pobra\u0107 go ze strony <a href=\"http:\/\/files.constantcontact.com\/fc88c999301\/4a707677-bb13-4ccf-a5a7-d75c7630cb0e.pdf\">http:\/\/files.constantcontact.com\/fc88c999301\/4a707677-bb13-4ccf-a5a7-d75c7630cb0e.pdf<\/a><\/p>\n<p><strong>JAKI JEST NAJLEPSZY SPOS\u00d3B KONTAKTU Z ORGANIZACJ\u0104:<\/strong><\/p>\n<p><a href=\"\/pl\/info@curecalpain3.org\/\">Napisz do nas<\/a> na <a href=\"mailto:info@curecalpain3.org\">info@curecalpain3.org<\/a>. Odpowiemy!<\/p>\n<p><strong>CZY JEST CO\u015a JESZCZE, CO CHCIA\u0141BY\u015a DODA\u0106?<\/strong><\/p>\n<p>Je\u015bli wiesz, \u017ce cierpisz na jak\u0105\u015b form\u0119 dystrofii mi\u0119\u015bniowej obr\u0119czy ko\u0144czyny dolnej, nalegaj na przeprowadzenie bada\u0144 genetycznych w celu zidentyfikowania swojego typu. Wszystkie organizacje LGMD i spo\u0142eczno\u015b\u0107 naukowa musz\u0105 si\u0119 jeszcze wiele nauczy\u0107 o tej grupie chor\u00f3b, a Ty mo\u017cesz pom\u00f3c, do\u0142\u0105czaj\u0105c do odpowiedniego rejestru pacjent\u00f3w. Poszukaj wielu grup wsparcia; nie jeste\u015b sam. Pami\u0119taj, \u017ce jeste\u015bmy zmotywowani i pracujemy ka\u017cdego dnia, aby dowiedzie\u0107 si\u0119 wi\u0119cej o kalpainopatii i znale\u017a\u0107 leczenie lub lekarstwo.<\/p>\n<p>\u00a0<\/p>\n<p><strong>\u00a0<\/strong><\/p>\n<p>\u00a0<\/p>\n<p>\u00a0<\/p>","protected":false},"excerpt":{"rendered":"<p>NAME OF ORGANIZATION:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 Coalition to Cure Calpain 3 WEBSITE:\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 [&hellip;]<\/p>","protected":false},"author":1,"featured_media":2874,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[94,14,95],"tags":[82],"class_list":["post-1798","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-organization-interview","category-lgmd2a","category-organization","tag-lgmd2a-calpainopathy"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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