{"id":10713,"date":"2024-12-18T16:40:53","date_gmt":"2024-12-18T16:40:53","guid":{"rendered":"https:\/\/www.rawoodfoundation.org\/?p=10713"},"modified":"2024-12-18T16:45:08","modified_gmt":"2024-12-18T16:45:08","slug":"2024-bilan-de-lannee-faire-progresser-la-recherche-et-le-soutien-en-matiere-de-plaidoyer","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/fr\/2024\/12\/18\/2024-year-in-review-advancing-advocacy-research-and-support\/","title":{"rendered":"Bilan de l'ann\u00e9e 2024 : Faire progresser la d\u00e9fense des int\u00e9r\u00eats, la recherche et le soutien"},"content":{"rendered":"<h2 class=\"wp-block-heading\"><strong>R\u00e9flexion sur une ann\u00e9e de croissance, de r\u00e9silience et d'impact sur la communaut\u00e9<\/strong><\/h2>\n\n\n\n<p>\u00c0 l'approche de 2024, la Raymond A. Wood Foundation revient sur une ann\u00e9e marqu\u00e9e par d'importantes r\u00e9alisations en mati\u00e8re de recherche, de d\u00e9fense des patients et de soutien aux survivants des tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires. Ces \u00e9tapes ont \u00e9t\u00e9 rendues possibles gr\u00e2ce au d\u00e9vouement de nos partisans, de nos collaborateurs et de la communaut\u00e9 r\u00e9siliente que nous servons.<\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>Points forts de la recherche<\/strong><\/h3>\n\n\n\n<p>Cette ann\u00e9e, la fondation a consolid\u00e9 son r\u00f4le de leader dans les initiatives de recherche centr\u00e9es sur le patient :<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Lancement du registre des patients<\/strong>: Nous sommes fiers d'avoir lanc\u00e9 le registre des patients atteints de tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires. Cet outil vital permet aux survivants et aux soignants de contribuer \u00e0 des recherches novatrices, qui permettent de mieux comprendre l'impact de ces tumeurs et les maladies rares qui en d\u00e9coulent, notamment l'ob\u00e9sit\u00e9 hypothalamique.<\/li>\n\n\n\n<li><strong>Membres du Conseil ex\u00e9cutif<\/strong>: Nous sommes rest\u00e9s membres du conseil ex\u00e9cutif du Children's Brain Tumor Network (CBTN). Le CBTN est une biobanque de tumeurs c\u00e9r\u00e9brales en pleine expansion qui fournit des \u00e9chantillons de donn\u00e9es aux chercheurs afin d'acc\u00e9l\u00e9rer la recherche sur les tumeurs c\u00e9r\u00e9brales. Gr\u00e2ce \u00e0 notre collaboration avec le CBTN, nous souhaitons relier les donn\u00e9es de notre registre de patients \u00e0 des \u00e9chantillons de tissus de craniopharyngiome.<\/li>\n\n\n\n<li><strong>Progr\u00e8s du compteur de sodium<\/strong>: Le d\u00e9veloppement de l'appareil de mesure du sodium \u00e0 domicile est rest\u00e9 la pierre angulaire de notre travail. En 2024, nous nous sommes concentr\u00e9s sur la recherche d'opportunit\u00e9s de financement pour faire avancer le d\u00e9veloppement de cet outil transformateur, qui a le potentiel de r\u00e9volutionner les soins aux personnes pr\u00e9sentant un d\u00e9s\u00e9quilibre sodique.<\/li>\n\n\n\n<li><strong>Collaborations en mati\u00e8re de recherche<\/strong>: Gr\u00e2ce \u00e0 des partenariats dirig\u00e9s par notre directrice scientifique, le Dr Nathalie Kayadjanian, nous avons favoris\u00e9 des avanc\u00e9es dans des domaines tels que l'ob\u00e9sit\u00e9 hypothalamique, l'am\u00e9lioration de la qualit\u00e9 de vie et l'int\u00e9gration des r\u00e9sultats rapport\u00e9s par les patients dans la planification du traitement.<\/li>\n<\/ul>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>Plaidoyer et soutien<\/strong><\/h3>\n\n\n\n<p>Nous avons continu\u00e9 \u00e0 renforcer nos efforts de sensibilisation et de soutien aux patients, en veillant \u00e0 ce que les survivants et les familles aient acc\u00e8s aux ressources dont ils ont besoin :<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Initiatives en mati\u00e8re d'\u00e9ducation<\/strong>: Nous avons organis\u00e9 des webinaires et ajout\u00e9 du contenu \u00e0 notre cha\u00eene YouTube pour informer les patients et les familles sur les tumeurs, les traitements et la gestion des soins.<\/li>\n\n\n\n<li><strong>Mentorat pour les patients nouvellement diagnostiqu\u00e9s<\/strong>: Nous avons soutenu les familles qui commen\u00e7aient leur parcours en les associant \u00e0 des mentors qui r\u00e9pondaient \u00e0 leurs questions et leur donnaient des conseils.<\/li>\n\n\n\n<li><strong>Croissance de la Communaut\u00e9<\/strong>: Le lancement du registre des patients et les efforts d'engagement ont permis d'amplifier la voix des patients dans la recherche et de cr\u00e9er une communaut\u00e9 mondiale plus connect\u00e9e.<\/li>\n\n\n\n<li><strong>Sensibilisation<\/strong>: Nous avons organis\u00e9 la 6e \u00e9dition de l'\u00e9v\u00e9nement annuel \"Art of Surviving\", qui a permis de sensibiliser le public \u00e0 l'exp\u00e9rience des tumeurs c\u00e9r\u00e9brales pendant le Mois de la sensibilisation aux tumeurs c\u00e9r\u00e9brales.<\/li>\n\n\n\n<li><strong>Groupes de soutien<\/strong>: Les groupes mensuels de soutien aux aidants et aux survivants offrent des espaces s\u00e9curis\u00e9s pour partager les exp\u00e9riences et se rapprocher des autres.<\/li>\n\n\n\n<li><strong>Analyseurs sanguins portables pour la prise en charge du diab\u00e8te insipide<\/strong>: Cette ann\u00e9e, nous avons distribu\u00e9 cinq analyseurs de sang portables \u00e0 des patients p\u00e9diatriques, permettant ainsi aux familles de mieux g\u00e9rer le diab\u00e8te insipide et d'am\u00e9liorer les soins quotidiens.<\/li>\n<\/ul>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>Collecte de fonds et d\u00e9veloppement<\/strong><\/h3>\n\n\n\n<p>En 2024, la Fondation Raymond A. Wood a connu une ann\u00e9e de collecte de fonds transformatrice, aliment\u00e9e par la g\u00e9n\u00e9rosit\u00e9 et l'enthousiasme de nos donateurs :<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Partenaire caritatif du semi-marathon de New York<\/strong>: Nous avons \u00e9t\u00e9 ravis de devenir un partenaire caritatif du prestigieux semi-marathon de New York. Notre \u00e9quipe de coureurs d\u00e9vou\u00e9s a non seulement collect\u00e9 des fonds, mais a \u00e9galement attir\u00e9 l'attention nationale sur les besoins des survivants de tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires.<\/li>\n\n\n\n<li><strong>Campagne de dons jumel\u00e9s dans le cadre du Mois de sensibilisation aux tumeurs c\u00e9r\u00e9brales<\/strong>: Au mois de mai, nous avons lanc\u00e9 avec succ\u00e8s une campagne de dons jumel\u00e9s. Gr\u00e2ce \u00e0 la g\u00e9n\u00e9rosit\u00e9 de notre conseil d'administration et de nos partenaires, nous avons doubl\u00e9 l'impact des contributions, ce qui a permis de d\u00e9gager des fonds essentiels pour la recherche et les programmes de d\u00e9fense des int\u00e9r\u00eats des patients.<\/li>\n\n\n\n<li><strong>Gala Dancing Stars DC<\/strong>: En tant que b\u00e9n\u00e9ficiaire du DC Dancing Stars Gala, nous avons collect\u00e9 des fonds importants pour poursuivre des initiatives telles que le projet de compteur de sodium \u00e0 domicile. L'\u00e9v\u00e9nement a mis en \u00e9vidence l'incroyable pouvoir de la philanthropie communautaire.<\/li>\n\n\n\n<li><strong>Mardi de la g\u00e9n\u00e9rosit\u00e9 : Campagne \"Shore Gives More<\/strong>: Nous avons termin\u00e9 l'ann\u00e9e avec la campagne Shore Gives More. Cette initiative communautaire a permis de mobiliser des sympathisants locaux et de contribuer \u00e0 nos objectifs de collecte de fonds en fin d'ann\u00e9e, assurant ainsi la p\u00e9rennit\u00e9 de nos programmes et services.<\/li>\n<\/ul>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>Naviguer dans la transition au-del\u00e0 du financement de la subvention CZI<\/strong><\/h3>\n\n\n\n<p>En 2024, nous avons marqu\u00e9 la fin de la subvention du r\u00e9seau CZI Rare As One, qui a apport\u00e9 un soutien transformateur au cours des derni\u00e8res ann\u00e9es. Bien que le financement de la subvention ait pris fin, notre engagement \u00e0 collaborer au sein du r\u00e9seau Rare As One reste in\u00e9branlable. En tant que membres actifs de cette communaut\u00e9 inspirante, nous continuons \u00e0 travailler aux c\u00f4t\u00e9s de coll\u00e8gues sp\u00e9cialistes des maladies rares, en partageant nos exp\u00e9riences et nos strat\u00e9gies pour faire avancer les choses. Les relations et les connaissances acquises gr\u00e2ce \u00e0 ce r\u00e9seau continueront \u00e0 fa\u00e7onner et \u00e0 renforcer notre mission.<\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>Regarder vers l'avenir<\/strong><\/h3>\n\n\n\n<p>2024 a \u00e9t\u00e9 une ann\u00e9e de croissance, d'apprentissage et d'impact. Alors que nous envisageons 2025, nous sommes stimul\u00e9s par les possibilit\u00e9s d'\u00e9tendre notre port\u00e9e, de d\u00e9velopper de nouvelles ressources et de poursuivre notre mission d'am\u00e9lioration de la qualit\u00e9 de vie des survivants et de leurs familles. Nous restons attach\u00e9s \u00e0 une collaboration \u00e9thique avec nos partenaires du monde de la recherche et de l'entreprise, en veillant \u00e0 ce que les int\u00e9r\u00eats de la communaut\u00e9 restent au c\u0153ur de tout ce que nous entreprenons.<\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>Gratitude \u00e0 l'\u00e9gard de nos donateurs<\/strong><\/h3>\n\n\n\n<p>Merci \u00e0 tous ceux qui ont contribu\u00e9 \u00e0 notre mission cette ann\u00e9e. Votre g\u00e9n\u00e9rosit\u00e9, votre temps et votre d\u00e9vouement nous permettent de poursuivre des recherches novatrices, de fournir des ressources essentielles et de plaider en faveur de changements significatifs.<\/p>\n\n\n\n<p>Ensemble, nous cr\u00e9ons un avenir meilleur pour les survivants. Nous esp\u00e9rons poursuivre sur cette lanc\u00e9e en 2025 !<\/p>\n\n\n\n<a class=\"gb-button gb-button-f3c4a469 gb-button-text\" href=\"https:\/\/www.rawoodfoundation.org\/fr\/faire-un-don\/\">Faire un don<\/a>\n\n\n\n<p><\/p>","protected":false},"excerpt":{"rendered":"<p>R\u00e9flexion sur une ann\u00e9e de croissance, de r\u00e9silience et d'impact sur la communaut\u00e9 \u00c0 l'approche de 2024, la ... <a title=\"Bilan de l&#039;ann\u00e9e 2024 : Faire progresser la d\u00e9fense des int\u00e9r\u00eats, la recherche et le soutien\" class=\"read-more\" href=\"https:\/\/www.rawoodfoundation.org\/fr\/2024\/12\/18\/2024-year-in-review-advancing-advocacy-research-and-support\/\" aria-label=\"Pour en savoir plus sur le bilan de l&#039;ann\u00e9e 2024 : Faire progresser la d\u00e9fense des int\u00e9r\u00eats, la recherche et le soutien\">Lire plus<\/a><\/p>","protected":false},"author":4,"featured_media":10719,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[1],"tags":[],"class_list":["post-10713","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized","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>2024 Year in Review: Advancing Advocacy, Research, and Support - Raymond A. Wood 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.rawoodfoundation.org\/fr\/2024\/12\/18\/2024-bilan-de-lannee-faire-progresser-la-recherche-et-le-soutien-en-matiere-de-plaidoyer\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"2024 Year in Review: Advancing Advocacy, Research, and Support - Raymond A. Wood Foundation\" \/>\n<meta property=\"og:description\" content=\"Reflecting on a Year of Growth, Resilience, and Community Impact As we close 2024, the ... Lire plus\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.rawoodfoundation.org\/fr\/2024\/12\/18\/2024-bilan-de-lannee-faire-progresser-la-recherche-et-le-soutien-en-matiere-de-plaidoyer\/\" \/>\n<meta property=\"og:site_name\" content=\"Raymond A. 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