{"id":8810,"date":"2023-12-27T07:00:00","date_gmt":"2023-12-27T07:00:00","guid":{"rendered":"https:\/\/www.rawoodfoundation.org\/?p=8810"},"modified":"2025-10-14T04:53:53","modified_gmt":"2025-10-14T04:53:53","slug":"bilan-de-lannee","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/fr\/2023\/12\/27\/year-in-review\/","title":{"rendered":"2023 avec RAWF : bilan de l'ann\u00e9e"},"content":{"rendered":"<p>2023 a \u00e9t\u00e9 une ann\u00e9e remarquable pour la Fondation Raymond A. Wood, une ann\u00e9e remplie de progr\u00e8s, d'impact et de jalons significatifs. Alors que nous jetons un regard r\u00e9trospectif sur l'ann\u00e9e \u00e9coul\u00e9e, nous sommes ravis de partager les faits marquants qui ont fa\u00e7onn\u00e9 notre parcours dans les domaines de l'\u00e9ducation, de la recherche, du soutien, du d\u00e9veloppement et de la croissance.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>Croissance et d\u00e9veloppement<\/strong><\/h3>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Deuxi\u00e8me ann\u00e9e avec l'initiative Chan Zuckerberg<\/strong>: Nous avons connu une croissance continue dans le cadre de l'initiative Chan Zuckerberg Rare as One Network, marquant ainsi la deuxi\u00e8me ann\u00e9e de ce voyage \u00e0 fort impact. Le soutien de cette subvention nous a permis d'\u00e9tendre notre port\u00e9e et de d\u00e9fendre les survivants des tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires \u00e0 plus grande \u00e9chelle.<\/li>\n\n\n\n<li><strong>C\u00e9l\u00e9brer les survivants : <\/strong>Nous avons organis\u00e9 la cinqui\u00e8me \u00e9dition de l'exposition annuelle \"Art of Surviving\" dans le cadre du mois de sensibilisation aux tumeurs c\u00e9r\u00e9brales. Cette ann\u00e9e, nous avons donn\u00e9 vie \u00e0 notre exposition d'art virtuelle pour notre premi\u00e8re r\u00e9ception et galerie en personne \u00e0 Falls Church, VA, o\u00f9 nous avons pr\u00e9sent\u00e9 le travail artistique de la communaut\u00e9 des personnes atteintes de tumeurs c\u00e9r\u00e9brales.<\/li>\n\n\n\n<li><strong>Collecter des fonds et susciter l'enthousiasme<\/strong>: Notre tombola 2023 Big Fish Classic Ford Bronco a non seulement suscit\u00e9 l'enthousiasme et l'attente du grand gagnant, mais a \u00e9galement permis de collecter des fonds cruciaux pour notre fondation, ce qui nous permet de poursuivre notre travail essentiel de soutien direct aux survivants et aux soignants. <\/li>\n\n\n\n<li><strong>Expansion de l'\u00e9quipe : <\/strong>Nous avons accueilli Meghan Wood, responsable des dons majeurs, au sein de notre \u00e9quipe, renfor\u00e7ant ainsi notre capacit\u00e9 de croissance et d'impact.<\/li>\n\n\n\n<li><strong>Nouveaux membres du conseil d'administration<\/strong>: Nous avons \u00e9t\u00e9 ravis d'accueillir trois nouveaux membres du conseil d'administration, Josh Blumenthal, Joan Saperstein, MD, et Ethan Schilling, PhD. Leur expertise diversifi\u00e9e a enrichi notre direction.<\/li>\n\n\n\n<li><strong>Aller de l'avant<\/strong>: Jamie Ping a assum\u00e9 un r\u00f4le plus important au sein de RAWF, passant de coordinateur de la sensibilisation \u00e0 responsable de la communication et de la sensibilisation.<\/li>\n\n\n\n<li><strong>Aller de l'avant<\/strong>: Les membres fondateurs restants du conseil d'administration, Shawn Wood et Caroline Coakley, sont devenus membres \u00e9m\u00e9rites du conseil d'administration. Nous leur sommes profond\u00e9ment reconnaissants pour leurs services.<\/li>\n<\/ul>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>\u00c9ducation et sensibilisation<\/strong><\/h3>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Partager les connaissances \u00e0 l'\u00e9chelle mondiale<\/strong>: Amy Wood a eu l'honneur de faire une pr\u00e9sentation au sommet mondial de l'International Brain Tumor Alliance \u00e0 Vienne, en Autriche. Sa pr\u00e9sentation intitul\u00e9e \"Novel Approaches to Supporting Young Hypothalamic-Pituitary Brain Tumor Patients\" (Nouvelles approches pour soutenir les jeunes patients atteints de tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires) a mis en \u00e9vidence l'exp\u00e9rience de la survie \u00e0 un craniopharyngiome et notre d\u00e9vouement \u00e0 la sensibilisation \u00e0 l'\u00e9chelle mondiale.<\/li>\n\n\n\n<li><strong>Se reconnecter<\/strong> <strong>En personne :<\/strong> Apr\u00e8s une pause, nous avons organis\u00e9 notre premi\u00e8re conf\u00e9rence familiale sur les tumeurs c\u00e9r\u00e9brales hypophysaires en personne depuis 2019 \u00e0 l'h\u00f4pital pour enfants de Philadelphie. Les sujets abord\u00e9s couvraient la sant\u00e9 int\u00e9grative, les probl\u00e8mes endocriniens, les d\u00e9fis sociaux et de sommeil, ainsi que les opportunit\u00e9s de r\u00e9seautage et de cr\u00e9ation de communaut\u00e9.<\/li>\n\n\n\n<li><strong>Une prise de conscience croissante : <\/strong>Amy Wood a particip\u00e9 \u00e0 une table ronde sur l'importance des donn\u00e9es dans la recherche sur les maladies rares lors de la semaine Komodo \u00e0 Las Vegas en mars dernier et a pr\u00e9sent\u00e9 le point de vue des patients et des soignants sur l'ob\u00e9sit\u00e9 hypothalamique \u00e0 Boston lors de l'\u00e9v\u00e9nement R&amp;D de Rhythm Pharmaceuticals au d\u00e9but de ce mois.<\/li>\n<\/ul>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>Recherche<\/strong><\/h3>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Financement de l'innovation m\u00e9dicale : <\/strong>RAWF a continu\u00e9 \u00e0 investir et \u00e0 donner des conseils sur le d\u00e9veloppement d'un appareil de mesure du sodium \u00e0 domicile pour la gestion des soins dans le diab\u00e8te insipide et d'autres maladies qui n\u00e9cessitent un dosage du sodium. Ce projet sera au c\u0153ur des pr\u00e9occupations en 2024 !<\/li>\n\n\n\n<li><strong>Initiative sur le registre des patients<\/strong>: En 2023, nous nous sommes lanc\u00e9s dans le d\u00e9veloppement du registre des patients atteints de tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires, une \u00e9tape importante guid\u00e9e par Nathalie Kayadjanian PhD et notre comit\u00e9 consultatif du registre des patients. Ce registre promet d'\u00eatre une ressource pr\u00e9cieuse pour faire avancer la recherche et comprendre ces tumeurs rares.<\/li>\n\n\n\n<li><strong>Renforcer l'expertise en mati\u00e8re de recherche : <\/strong>Notre conseil scientifique a organis\u00e9 deux r\u00e9unions et a accueilli le Dr Soma Sengupta en tant que nouveau membre, renfor\u00e7ant ainsi l'engagement de RAWF en faveur de l'excellence en mati\u00e8re de recherche.<\/li>\n\n\n\n<li><strong>Contribuer \u00e0 la connaissance m\u00e9dicale<\/strong>: Nous avons apport\u00e9 une contribution significative \u00e0 la communaut\u00e9 m\u00e9dicale en publiant \"Caregiver Burden and Its Relationship to Health-Related Quality of Life in Craniopharyngioma Survivors\" dans le Journal of Clinical Endocrinology and Metabolism, mettant ainsi en lumi\u00e8re un aspect important de notre mission.<\/li>\n\n\n\n<li><strong>Projets de collaboration<\/strong>: Nous avons continu\u00e9 \u00e0 soutenir financi\u00e8rement le Children's Brain Tumor Network et \u00e0 si\u00e9ger \u00e0 son conseil d'administration. Cette collaboration soutient une biobanque de tissus tumoraux afin d'acc\u00e9l\u00e9rer la recherche sur le craniopharyngiome. En outre, nous avons particip\u00e9 au groupe de travail du PNOC sur le craniopharyngiome.<\/li>\n<\/ul>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>Soutien<\/strong><\/h3>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Soutien communautaire : <\/strong>Les groupes de soutien mensuels pour les soignants et les survivants sont rest\u00e9s un \u00e9l\u00e9ment essentiel de nos efforts de sensibilisation. Ces groupes ont permis de partager des exp\u00e9riences, d'offrir un soutien et de construire une communaut\u00e9 forte et bienveillante. En outre, nous avons offert des possibilit\u00e9s de mentorat aux familles nouvellement diagnostiqu\u00e9es, en les guidant tout au long de leur parcours avec compassion et expertise.<\/li>\n\n\n\n<li><strong>Une exp\u00e9rience en ligne am\u00e9lior\u00e9e<\/strong>: Nous avons d\u00e9voil\u00e9 un tout nouveau site web en 2023, con\u00e7u pour \u00eatre un centre de ressources complet pour les patients et les familles. Il offre d\u00e9sormais un acc\u00e8s plus facile aux informations sur la recherche, les essais cliniques, les services de soutien et les services de recherche de m\u00e9decins.<\/li>\n\n\n\n<li><strong>Gestion des soins : <\/strong>Nous avons continu\u00e9 \u00e0 fournir des analyseurs de sang portables aux familles de patients p\u00e9diatriques confront\u00e9s \u00e0 un diab\u00e8te insipide d\u00fb \u00e0 une tumeur c\u00e9r\u00e9brale. Ce projet est \u00e0 l'origine de la RAWF et reste un \u00e9l\u00e9ment important de notre travail. Nous avons actuellement 30 analyseurs de sang en circulation.<\/li>\n<\/ul>\n\n\n\n<p>Alors que nous r\u00e9fl\u00e9chissons \u00e0 ces faits marquants, nous exprimons notre sinc\u00e8re gratitude \u00e0 notre communaut\u00e9, \u00e0 notre \u00e9quipe et \u00e0 nos partenaires pour leur soutien ind\u00e9fectible. Ensemble, nous avons franchi des \u00e9tapes incroyables en 2023 et nous sommes enthousiastes pour l'avenir.<\/p>\n\n\n\n<p>Merci de vous joindre \u00e0 nous dans cette mission de d\u00e9fense, d'\u00e9ducation et de soutien de la communaut\u00e9 des tumeurs c\u00e9r\u00e9brales rares. Nous attendons avec impatience une nouvelle ann\u00e9e de progr\u00e8s et de diff\u00e9rence dans la vie de ceux que nous servons ! <\/p>","protected":false},"excerpt":{"rendered":"<p>2023 a \u00e9t\u00e9 une ann\u00e9e remarquable pour la Fondation Raymond A. Wood, une ann\u00e9e remplie de ... <a title=\"2023 avec RAWF : bilan de l&#039;ann\u00e9e\" class=\"read-more\" href=\"https:\/\/www.rawoodfoundation.org\/fr\/2023\/12\/27\/year-in-review\/\" aria-label=\"Plus d&#039;informations sur 2023 avec RAWF : une ann\u00e9e en revue\">Lire plus<\/a><\/p>","protected":false},"author":6,"featured_media":8813,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[30],"tags":[],"class_list":["post-8810","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-rawf-news","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>2023 with RAWF: A Year in Review - Raymond A. 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