{"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\/fr\/lgmd2a\/2018\/04\/15\/coalition-to-cure-calpain-3\/","title":{"rendered":"ORGANISATION : Coalition pour la gu\u00e9rison de la calpa\u00efne 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>NOM DE L'ORGANISATION<\/strong>:         Coalition pour la gu\u00e9rison de la calpa\u00efne 3<\/p>\n<p><strong>SITE WEB :<\/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 pour la gu\u00e9rison de la calpa\u00efne 3 : Vaincre la LGMD2A\/Calpa\u00efnopathie<\/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>QUEL EST LE SOUS-TYPE DE LGMD SUR LEQUEL VOTRE ORGANISATION SE CONCENTRE :\u00a0 <\/strong><\/p>\n<p>LGMD2A, une forme de calpa\u00efnopathie<\/p>\n<p><strong>SI VOUS VOUS CONCENTREZ SUR UN SOUS-TYPE, EXISTE-T-IL UN REGISTRE ET COMMENT LES PATIENTS PEUVENT-ILS S'Y INSCRIRE ? <\/strong><\/p>\n<p>Oui, nous tenons le registre mondial des patients atteints de LGMD2A.  Il est facile de s'inscrire sur <a href=\"http:\/\/www.lgmd2a.org\">www.lgmd2a.org<\/a><\/p>\n<p><strong>Votre organisation est-elle \u00e0 but non lucratif ? Si oui, de quel type :\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n<p>Oui, nous sommes une organisation caritative publique exon\u00e9r\u00e9e d'imp\u00f4t, bas\u00e9e aux \u00c9tats-Unis, de type 501 (c)(3).<\/p>\n<p><strong>CE QUI A INSPIR\u00c9 LA CR\u00c9ATION DE VOTRE ORGANISATION<\/strong>:<\/p>\n<p>La Coalition to Cure Calpain 3 (C3) a \u00e9t\u00e9 fond\u00e9e en 2010 dans le but sp\u00e9cifique de financer les efforts de recherche visant \u00e0 comprendre la biologie de la LGMD2A, une forme de calpa\u00efnopathie, et \u00e0 trouver un traitement pour cette maladie. Cette organisation a \u00e9t\u00e9 cr\u00e9\u00e9e par des patients et leurs familles qui \u00e9taient frustr\u00e9s par le manque de connaissances sur la maladie et le fait que tr\u00e8s peu de recherches \u00e9taient men\u00e9es. Pour certains d'entre nous, l'obtention d'un diagnostic pr\u00e9cis a m\u00eame pris des d\u00e9cennies.  Nous sommes motiv\u00e9s par notre d\u00e9sir d'encourager la collaboration entre les scientifiques, les personnes atteintes de LGMD2A, leurs familles et amis, et la communaut\u00e9 dans son ensemble, afin de mettre un terme \u00e0 cette maladie \"orpheline\" qui ne fait pas l'objet de recherches suffisantes et qui n'est pas suffisamment financ\u00e9e.<\/p>\n<p><strong>QUELLE EST LA MISSION DE VOTRE ORGANISATION :<\/strong><\/p>\n<p>C3 s'engage \u00e0 traiter et, \u00e0 terme, \u00e0 gu\u00e9rir la dystrophie musculaire des ceintures de type 2A (LGMD2A), une forme de calpa\u00efnopathie. Notre mission est de financer la recherche et les essais cliniques \u00e0 fort potentiel tout en \u00e9duquant la communaut\u00e9 mondiale sur cette maladie.<\/p>\n<p><strong>QUELS SONT LES SERVICES OFFERTS PAR VOTRE ORGANISATION :<\/strong><\/p>\n<p>- Financer la recherche sur la LGMD2A\/Calpainopathie<\/p>\n<p>- Maintenir le registre mondial des patients atteints de LGMD2A\/Calpainopathie<\/p>\n<p>- Informer la communaut\u00e9 mondiale (y compris la communaut\u00e9 scientifique, les patients, leurs familles et le grand public) sur la maladie par le biais de notre site web, des m\u00e9dias sociaux, de notre pr\u00e9sence \u00e0 des conf\u00e9rences scientifiques et de communications par courrier \u00e9lectronique.<\/p>\n<p>- Mettre en place un forum de soutien pour les patients et leurs familles sur Facebook (<a href=\"\/fr\/carol@curecalpain3.org\/\">email C3 Directrice de la sensibilisation des patients Carol Abraham<\/a> pour adh\u00e9rer)<\/p>\n<p><strong>DE QUOI VOTRE ORGANISATION EST-ELLE LA PLUS FI\u00c8RE ?<\/strong><\/p>\n<p>Nous sommes particuli\u00e8rement fiers d'avoir pu attirer et soutenir des scientifiques de haut niveau pour stimuler la recherche sur les calpa\u00efnopathies. Le Dr Melissa Spencer a dirig\u00e9 notre conseil scientifique depuis notre cr\u00e9ation en 2010, aux c\u00f4t\u00e9s des Drs Kevin Campbell, Eric Hoffman et Lou Kunkel. Le Dr Jennifer Levy nous a rejoints en tant que premi\u00e8re directrice scientifique de C3 en 2016 et a plus que doubl\u00e9 le nombre de projets de recherche que nous finan\u00e7ons. Le fait que notre fondation, qui n'\u00e9tait au d\u00e9part qu'une id\u00e9e que nous avions pour essayer de faire la diff\u00e9rence, ait engag\u00e9 pr\u00e8s de $1,5 million de dollars dans la recherche sur la calpa\u00efnopathie entreprise par des scientifiques de premier plan - les Drs Michele Calos, Lou Kunkel, Cathleen Lutz, Rita Perlingeiro, Isabelle Richard, Melissa Spencer, Volker Straub - est quelque chose dont nous sommes vraiment fiers.<\/p>\n<p><strong>Que voulez-vous que le monde sache \u00e0 propos de VOTRE ORGANISATION ?<\/strong>:<\/p>\n<p>Nous avons r\u00e9cemment lanc\u00e9 une initiative de th\u00e9rapie g\u00e9nique qui vise \u00e0 acc\u00e9l\u00e9rer la compr\u00e9hension de la th\u00e9rapie g\u00e9nique en tant que traitement de la LGMD2A en finan\u00e7ant la recherche de plusieurs approches de th\u00e9rapie g\u00e9nique. Si les r\u00e9sultats des projets de recherche actuels ou futurs de l'initiative de th\u00e9rapie g\u00e9nique sont positifs, ils pourront progresser vers le lancement d'essais cliniques pour les patients atteints de LGMD2A. Restez \u00e0 l'aff\u00fbt des annonces que nous ferons au fur et \u00e0 mesure que nous financerons de nouveaux projets. <a href=\"http:\/\/www.curecalpain3.org\/research\">http:\/\/www.curecalpain3.org\/research<\/a><\/p>\n<p><strong>COMMENT LES GENS PEUVENT-ILS S'IMPLIQUER DANS LE SOUTIEN DE VOTRE ORGANISATION :<\/strong><\/p>\n<p>Faire passer une th\u00e9rapie du laboratoire de recherche \u00e0 l'essai clinique est un processus long et co\u00fbteux. Le moyen le plus important de soutenir la mission de notre organisation est de faire un don. Chaque dollar fait la diff\u00e9rence dans nos efforts pour gu\u00e9rir cette maladie qui d\u00e9truit les muscles.<\/p>\n<p>Les donateurs peuvent faire des dons de trois mani\u00e8res diff\u00e9rentes :<\/p>\n<p>&#8211; <a href=\"https:\/\/donatenow.networkforgood.org\/C3\">notre site web<\/a> (en ligne)<\/p>\n<p>- notre <a href=\"https:\/\/www.crowdrise.com\/o\/en\/campaign\/c3-gene-therapy-initiative\/coalitiontocurecalpa\">Campagne Crowdrise<\/a> (en ligne)<\/p>\n<p>- par courrier via un ch\u00e8que (hors ligne)<\/p>\n<p><a href=\"\/fr\/info@curecalpain3.org\/\">nous envoyer un courriel<\/a> et demander un formulaire de don ou en t\u00e9l\u00e9charger un \u00e0 l'adresse suivante <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>QUEL EST LE MEILLEUR MOYEN DE CONTACTER VOTRE ORGANISATION :<\/strong><\/p>\n<p><a href=\"\/fr\/info@curecalpain3.org\/\">Envoyez-nous un courriel<\/a> \u00e0 <a href=\"mailto:info@curecalpain3.org\">info@curecalpain3.org<\/a>. Nous vous r\u00e9pondrons !<\/p>\n<p><strong>Y A-T-IL AUTRE CHOSE QUE VOUS AIMERIEZ AJOUTER ?<\/strong><\/p>\n<p>Si vous savez que vous \u00eates atteint d'une forme de dystrophie musculaire des ceintures, faites pression pour que des tests g\u00e9n\u00e9tiques soient effectu\u00e9s afin d'identifier votre type. Les organisations de lutte contre la dystrophie musculaire des ceintures et la communaut\u00e9 scientifique ont encore beaucoup \u00e0 apprendre sur ce groupe de maladies, et vous pouvez les aider en vous inscrivant au registre des patients appropri\u00e9. Recherchez les nombreux groupes de soutien ; vous n'\u00eates pas seul. Sachez que nous sommes motiv\u00e9s et que nous travaillons chaque jour pour en savoir plus sur la calpa\u00efnopathie et pour trouver un traitement ou un rem\u00e8de.<\/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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