{"id":103,"date":"2021-07-13T14:45:45","date_gmt":"2021-07-13T14:45:45","guid":{"rendered":"https:\/\/live-rawf.pantheonsite.io\/2021\/07\/13\/2021-7-13-will-you-help-us\/"},"modified":"2023-08-01T19:21:59","modified_gmt":"2023-08-01T19:21:59","slug":"2021-7-13-voulez-vous-nous-aider","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/fr\/2021\/07\/13\/2021-7-13-will-you-help-us\/","title":{"rendered":"Voulez-vous nous aider ?"},"content":{"rendered":"<div class=\"sqs-html-content\">\n<h3 style=\"white-space: pre-wrap;\"><em>Un message d'Amy Wood, directrice ex\u00e9cutive<\/em><\/h3>\n<\/div>\n<figure class=\"block-animation-none\">\n<blockquote data-animation-role=\"quote\"><p>\n\"Seuls, nous ne pouvons pas faire grand-chose ;<br \/>\nEnsemble, nous pouvons faire beaucoup\".<\/blockquote><figcaption class=\"source\">- Helen Keller<\/figcaption><\/figure>\n<div class=\"sqs-html-content\">\n<p class=\"\" style=\"white-space: pre-wrap;\">Mon mari et moi avons cr\u00e9\u00e9 cette fondation en 2017 avec une id\u00e9e simple : fournir des analyseurs de sang portables aux survivants de tumeurs c\u00e9r\u00e9brales comme notre fils Alex. Nous avons lutt\u00e9 si longtemps pour g\u00e9rer efficacement son diab\u00e8te insipide et l'analyseur a chang\u00e9 nos vies. Nous savions que d'autres personnes devaient avoir acc\u00e8s \u00e0 cet appareil et nous avons donc entrepris de lever les obstacles \u00e0 son obtention. Nous nous sommes rapidement rendu compte qu'il y avait beaucoup d'autres probl\u00e8mes \u00e0 r\u00e9soudre, tant pour Alex que pour d'autres survivants - des probl\u00e8mes auxquels vous, votre enfant ou votre proche \u00eates probablement confront\u00e9s.<\/p>\n<p>Je n'avais jamais dirig\u00e9 d'organisation \u00e0 but non lucratif auparavant, mais j'ai rassembl\u00e9 mes comp\u00e9tences acquises au cours d'une longue carri\u00e8re dans la conception de sites web, le marketing et la communication, et je les ai mises au service de la cr\u00e9ation de cette organisation. Nous avons ensuite r\u00e9uni un petit conseil d'administration, d\u00e9vou\u00e9 \u00e0 la mission, et, ensemble, nous avons cr\u00e9\u00e9 une organisation petite mais puissante qui travaille activement \u00e0 l'am\u00e9lioration de la vie des survivants des tumeurs c\u00e9r\u00e9brales. Apr\u00e8s avoir g\u00e9r\u00e9 la fondation en parall\u00e8le de 2017 \u00e0 2020, j'ai abandonn\u00e9 ma carri\u00e8re et mes revenus en tant que directrice cr\u00e9ative dans une soci\u00e9t\u00e9 de d\u00e9veloppement web pour devenir directrice ex\u00e9cutive de RAWF, qui a \u00e9t\u00e9 un projet passionnant.<\/p>\n<p>Comme beaucoup d'autres aidants d'un survivant d'une tumeur c\u00e9r\u00e9brale, je g\u00e8re les bons et les mauvais jours de mon fils et je d\u00e9fends constamment ses besoins. Peut-\u00eatre comme vous, je passe des heures \u00e0 r\u00e9gler nos probl\u00e8mes d'assurance maladie, \u00e0 consulter tel ou tel sp\u00e9cialiste, \u00e0 veiller \u00e0 ce qu'il re\u00e7oive une \u00e9ducation adapt\u00e9e \u00e0 ses capacit\u00e9s, \u00e0 essayer de trouver des m\u00e9dicaments, des th\u00e9rapies ou des outils qui l'aideront \u00e0 vivre mieux. Certains jours, c'est un v\u00e9ritable d\u00e9fi de tout g\u00e9rer, mais ce travail me console un peu de ce qu'Alex a v\u00e9cu et vit au quotidien.<\/p>\n<p>Mais pour pouvoir continuer \u00e0 avancer, j'ai besoin de votre aide. Les fondations les plus efficaces dans le domaine des maladies rares sont celles qui sont cr\u00e9\u00e9es dans le but de d\u00e9velopper et d'am\u00e9liorer les traitements, et qui sont compos\u00e9es d'une arm\u00e9e de personnes touch\u00e9es par la maladie - parents, soignants, membres de la famille, conjoints et survivants.<\/p>\n<p>La semaine derni\u00e8re, nous avons introduit une possibilit\u00e9 d'adh\u00e9sion. C'est ainsi que nous pourrons construire notre arm\u00e9e - un groupe uni pour s'attaquer aux probl\u00e8mes les plus importants et obtenir de meilleurs traitements pour les tumeurs et les effets \u00e0 long terme.<\/p>\n<p>Helen Keller a dit un jour : \"Seul, on ne peut pas faire grand-chose ; ensemble, on peut faire beaucoup\". Nous avons montr\u00e9 ce dont cette petite fondation est capable, avec seulement quelques personnes travaillant ensemble, mais que pourrions-nous faire avec tout un groupe de personnes passionn\u00e9es d\u00e9sireuses de changer les choses ? Je crois que les possibilit\u00e9s sont infinies.<\/p>\n<p>Voulez-vous m'aider ? Si vous ou votre proche avez b\u00e9n\u00e9fici\u00e9 de l'un de nos programmes et que vous souhaitez que le travail se poursuive, veuillez envisager de <a href=\"\/fr\/devenir-membre\/\">devenir membre <\/a>pour nous aider \u00e0 faire la diff\u00e9rence.<\/p>\n<\/div>\n<div class=\"sqs-block-button-container sqs-block-button-container--center\" data-animation-role=\"button\" data-alignment=\"center\" data-button-size=\"medium\" data-button-type=\"primary\">\n<a class=\"sqs-block-button-element--medium sqs-button-element--primary sqs-block-button-element\" href=\"\/fr\/devenir-membre\/\"><br \/>\nRejoignez-nous<br \/>\n<\/a><\/div>","protected":false},"excerpt":{"rendered":"<p class=\"\">Mon mari et moi avons cr\u00e9\u00e9 cette fondation en 2017 avec une id\u00e9e simple : fournir des analyseurs de sang portables aux survivants de tumeurs c\u00e9r\u00e9brales comme notre fils Alex. Nous avons lutt\u00e9 si longtemps pour g\u00e9rer efficacement son diab\u00e8te insipide et l'analyseur a chang\u00e9 nos vies. Nous savions que d'autres personnes devaient avoir acc\u00e8s \u00e0 cet appareil et nous avons donc entrepris de lever les obstacles \u00e0 son obtention. Nous nous sommes rapidement rendu compte qu'il y avait beaucoup d'autres probl\u00e8mes \u00e0 r\u00e9soudre, tant pour Alex que pour d'autres survivants - des probl\u00e8mes auxquels vous, votre enfant ou votre proche \u00eates probablement confront\u00e9s.<\/p>","protected":false},"author":4,"featured_media":104,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[41,19,35],"tags":[],"class_list":["post-103","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-advocacy","category-caregiver-stories","category-craniopharyngioma","generate-columns","tablet-grid-50","mobile-grid-100","grid-parent","grid-33","no-featured-image-padding"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.3 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Will You Help Us? - Raymond A. 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We quickly realized that there were so many other issues that needed to be tackled both for Alex and other survivors \u2014 issues likely faced by you or your child or loved one.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.rawoodfoundation.org\/fr\/2021\/07\/13\/2021-7-13-voulez-vous-nous-aider\/\" \/>\n<meta property=\"og:site_name\" content=\"Raymond A. 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