.<\/strong><\/p>\nLa pr\u00e9sidente Fabienne Lorr\u00e9 a tout d\u2019abord rappel\u00e9 ce qu\u2019\u00e9tait cette maladie rare neurologique AOA2 (ataxie apraxie oculomotrice de type 2) qui touche 2 de ses enfants. Elle a ensuite retrac\u00e9 l\u2019ensemble des activit\u00e9s r\u00e9alis\u00e9es sur l\u2019ann\u00e9e \u00e9coul\u00e9e et pr\u00e9sent\u00e9 le programme des actions pour 2024. Elle en a profit\u00e9 pour remercier chaleureusement les adh\u00e9rents, b\u00e9n\u00e9voles et partenaires pour leur aide et leur soutien. A noter que le nombre d\u2019adh\u00e9sions progresse et a atteint 241 adh\u00e9rents.<\/p>\n
Un bilan 2023 tr\u00e8s actif : \u00ab C\u2019est plus de 32 actions qui ont pu \u00eatre men\u00e9es afin de collecter des fonds pour la recherche et pr\u00e9voir une \u00e9pargne suffisante pour financer un traitement \u00e9ventuel en France ou \u00e0 l\u2019\u00e9tranger en lien avec la maladie. \u00bb soulignait Fabienne Lorr\u00e9. Et ce gr\u00e2ce \u00e0 une cinquantaine de b\u00e9n\u00e9voles. Une vid\u00e9o a permis \u00e0 l\u2019assembl\u00e9e de voir les diff\u00e9rentes r\u00e9alisations telles que la vente de flammenkueche ou hot dog sur des \u00e9v\u00e9nements sportifs et f\u00eates priv\u00e9es, de calendriers, de mirabelles, de jonquilles ; la participation aux brocantes et march\u00e9s de No\u00ebl ; l\u2019organisation de marches gourmandes ou encore le p\u00e9riple r\u00e9alis\u00e9 par \u00ab les Autruches \u00e0 bicyclette \u00bb, un d\u00e9fi sportif relay\u00e9 par la presse pour faire la promotion de l\u2019association et des maladies rares.<\/p>\n
\u00ab Gr\u00e2ce \u00e0 l\u2019investissement de tous, un nouveau don sera fait au laboratoire UCLA du professeur Brent Fogel chercheur am\u00e9ricain bas\u00e9 \u00e0 Los Angeles qui fait des recherches sp\u00e9cifiques sur cette maladie AOA2 \u00bb. La pr\u00e9sidente a pr\u00e9cis\u00e9 que \u00ab l\u2019engagement de l\u2019association \u00e9tait universel car il est au service de la recherche fondamentale \u00e0 destination de tous les malades touch\u00e9s par cette forme d\u2019ataxie.\u00bb Pour cl\u00f4turer la s\u00e9ance, la secr\u00e9taire de l\u2019association a pr\u00e9sent\u00e9 une vid\u00e9o originale illustrant l\u2019histoire de cette famille, film qui sera prochainement disponible sur le site et les r\u00e9seaux sociaux. Anne Chwaliszewski a conclu par ces mots : \u00ab l\u2019implication et la bienveillance de tous pour le soutien apport\u00e9 \u00e0 cette famille g\u00e9romoise, qu\u2019elle a \u00e9galement f\u00e9licit\u00e9 pour son investissement, son humilit\u00e9 et sa force f\u00e9d\u00e9ratrice autour du combat face au handicap.\u00bb<\/p>\n
AOA2 donne rendez-vous samedi 8 juin prochain pour la G\u2019rando, une randonn\u00e9e p\u00e9destre \u00e0 Grand (88).<\/p>\n
Pour plus d\u2019info : https:\/\/aoa2pournotreetoile.fr\/ et\u00a0Facebook : AOA2unespoirpournotreetoile<\/p>\n
![\"\"](\"https:\/\/vi.si-developpement.fr\/app\/uploads\/sites\/6\/2024\/03\/ag-aoa2-2-1024x472.jpeg\")
<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"Ce dimanche matin 24 mars s\u2019est tenue l\u2019Assembl\u00e9e G\u00e9n\u00e9rale de l\u2019association \u00ab\u00a0AOA2\u00a0un espoir pour nos \u00e9toiles\u00a0\u00bb \u00e0 la mairie de […]<\/p>\n","protected":false},"author":258,"featured_media":7438,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[20,25,17],"tags":[987,197],"acf":[],"yoast_head":"\n
AOA2\u00a0: un beau bilan 2023 avec plus de 32 actions men\u00e9es\u00a0! - Gerardmer Info<\/title>\n<meta name=\"robots\" content=\"noindex, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"AOA2\u00a0: un beau bilan 2023 avec plus de 32 actions men\u00e9es\u00a0! - Gerardmer Info\" \/>\n<meta property=\"og:description\" content=\"Ce dimanche matin 24 mars s\u2019est tenue l\u2019Assembl\u00e9e G\u00e9n\u00e9rale de l\u2019association \u00ab\u00a0AOA2\u00a0un espoir pour nos \u00e9toiles\u00a0\u00bb \u00e0 la mairie de […]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/vi.si-developpement.fr\/gerardmerinfo\/2024\/04\/aoa2-un-beau-bilan-2023-avec-plus-de-32-actions-menees\/\" \/>\n<meta property=\"og:site_name\" content=\"Gerardmer Info\" \/>\n<meta property=\"article:published_time\" content=\"2024-04-03T08:15:28+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/vi.si-developpement.fr\/app\/uploads\/sites\/6\/2024\/03\/ag-aoa2-1.jpeg\" \/>\n\t<meta property=\"og:image:width\" content=\"2560\" \/>\n\t<meta property=\"og:image:height\" content=\"1180\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"I.N\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"\u00c9crit par\" \/>\n\t<meta name=\"twitter:data1\" content=\"I.N\" \/>\n\t<meta name=\"twitter:label2\" content=\"Dur\u00e9e de lecture estim\u00e9e\" \/>\n\t<meta name=\"twitter:data2\" content=\"2 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\/\/vi.si-developpement.fr\/gerardmerinfo\/2024\/04\/aoa2-un-beau-bilan-2023-avec-plus-de-32-actions-menees\/\",\"url\":\"https:\/\/vi.si-developpement.fr\/gerardmerinfo\/2024\/04\/aoa2-un-beau-bilan-2023-avec-plus-de-32-actions-menees\/\",\"name\":\"AOA2\u00a0: un beau bilan 2023 avec plus de 32 actions men\u00e9es\u00a0! 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<\/a>Ce dimanche matin 24 mars s\u2019est tenue l\u2019Assembl\u00e9e G\u00e9n\u00e9rale de l\u2019association \u00ab\u00a0AOA2\u00a0<\/strong>un espoir pour nos \u00e9toiles\u00a0\u00bb \u00e0 la mairie de G\u00e9rardmer en pr\u00e9sence de l\u2019adjointe au maire Anne <\/strong>Chwaliszewski<\/strong>.<\/strong><\/p>\n