{"id":89898,"date":"2026-04-04T12:01:33","date_gmt":"2026-04-04T10:01:33","guid":{"rendered":"https:\/\/vosgesinfo.fr\/gerardmerinfo\/?p=89898"},"modified":"2026-04-03T09:38:45","modified_gmt":"2026-04-03T07:38:45","slug":"aoa2-un-espoir-pour-nos-etoiles-des-avancees-scientifiques-encourageantes-et-une-mobilisation-toujours-aussi-importante","status":"publish","type":"post","link":"https:\/\/vosgesinfo.fr\/gerardmerinfo\/2026\/04\/aoa2-un-espoir-pour-nos-etoiles-des-avancees-scientifiques-encourageantes-et-une-mobilisation-toujours-aussi-importante\/","title":{"rendered":"AOA2, un espoir pour nos \u00e9toiles : des avanc\u00e9es scientifiques encourageantes et une mobilisation toujours aussi importante"},"content":{"rendered":"<p><a href=\"https:\/\/vosgesinfo.fr\/app\/uploads\/sites\/6\/2026\/04\/agaoa2-1.jpg\"><img decoding=\"async\" class=\"aligncenter size-full wp-image-89899\" src=\"https:\/\/vosgesinfo.fr\/app\/uploads\/sites\/6\/2026\/04\/agaoa2-1.jpg\" alt=\"\" width=\"768\" height=\"354\" srcset=\"https:\/\/vosgesinfo.fr\/app\/uploads\/sites\/6\/2026\/04\/agaoa2-1.jpg 768w, https:\/\/vosgesinfo.fr\/app\/uploads\/sites\/6\/2026\/04\/agaoa2-1-300x138.jpg 300w\" sizes=\"(max-width: 768px) 100vw, 768px\" \/><\/a><\/p>\n<p><strong>L\u2019association AOA2, un espoir pour nos \u00e9toiles a tenu son Assembl\u00e9e G\u00e9n\u00e9rale annuelle le dimanche 29 mars \u00e0 la Salle des Armes de la Mairie de G\u00e9rardmer, en pr\u00e9sence de Monsieur le Maire, Thomas GION, des membres du bureau, du conseil d\u2019administration et d\u2019une trentaine d\u2019adh\u00e9rents et sympathisants.<\/strong><\/p>\n<p>La Pr\u00e9sidente, Fabienne LORRE, a pr\u00e9sent\u00e9 un rapport moral soulignant la dynamique remarquable de l\u2019association, qui compte 243 adh\u00e9rents. L\u2019ann\u00e9e 2025 a \u00e9t\u00e9 marqu\u00e9e par 34 \u00e9v\u00e9nements \u00e0 caract\u00e8res sportifs ou solidaires (brocante, march\u00e9 de Noel, f\u00eate priv\u00e9e), mobilisant plus de 40 b\u00e9n\u00e9voles actifs. Cette association r\u00e9colte des fonds en proposant la vente de tartes flamb\u00e9es lors de marches populaires, \u00e9v\u00e9nements sportifs, camping, marche gourmande. A ce propos, la pr\u00e9sidente remercie les partenaires associatifs ou priv\u00e9s dont le nombre important confirme l\u2019ancrage local et r\u00e9gional de l\u2019association.<br \/>\nLe tr\u00e9sorier, St\u00e9phane LORRE, a pr\u00e9sent\u00e9 un bilan financier positif valid\u00e9 \u00e0 l\u2019unanimit\u00e9. Il pr\u00e9cise que l\u2019ensemble des actions men\u00e9es mettent en avant, des finances solides et un engagement renouvel\u00e9 pour soutenir la recherche m\u00e9dicale contre la maladie rare qui touche ses deux enfants.<br \/>\nMoment fort de cette assembl\u00e9e, la secr\u00e9taire de l\u2019association, C\u00e9line ROLLAND, a expos\u00e9 les derni\u00e8res avanc\u00e9es du Professeur Brent Fogel, chercheur am\u00e9ricain de renomm\u00e9e internationale (UCLA), soutenu financi\u00e8rement par l\u2019association depuis 2020. En 2025, le Professeur Fogel a publi\u00e9 dans Annals of Neurology une revue de r\u00e9f\u00e9rence sur les ataxies r\u00e9cessives, confirmant son r\u00f4le d\u2019expert mondial. Il annonce notamment la mise au point d\u2019un nouveau biomarqueur permettant de mesurer en temps r\u00e9el l\u2019activit\u00e9 du g\u00e8ne SETX, dont la d\u00e9faillance est responsable de l\u2019AOA2.Cette innovation constitue une \u00e9tape d\u00e9cisive vers les futurs essais cliniques, Cette pr\u00e9sentation a suscit\u00e9 beaucoup d\u2019espoir et d\u2019\u00e9motion parmi les participants.<br \/>\nPuis, M Jean Paul Bournot, membre du conseil d\u2019administration, a fait une synth\u00e8se des \u00e9changes avec le d\u00e9put\u00e9 Christophe Naegelen concernant la proposition de loi visant \u00e0 permettre la d\u00e9fiscalisation des dons aux associations finan\u00e7ant la recherche hors UE. A ce jour, aucune r\u00e9ponse n\u2019a \u00e9t\u00e9 apport\u00e9e, cependant des remerciements sont formul\u00e9s pour cet engagement concret.<br \/>\nLa pr\u00e9sidente a conclu cette r\u00e9union, en pr\u00e9sentant le calendrier des actions 2026 d\u00e9j\u00e0 programm\u00e9es. Apres avoir remerci\u00e9 les membres pr\u00e9sents et donn\u00e9 la parole \u00e0 Monsieur le maire, L\u2019Assembl\u00e9e G\u00e9n\u00e9rale s\u2019est conclue autour du verre de l\u2019amiti\u00e9, symbole de la coh\u00e9sion et de la d\u00e9termination des b\u00e9n\u00e9voles \u00e0 poursuivre cette belle dynamique solidaire autour de cette famille g\u00e9romoise.<\/p>\n<p><strong>Association AOA2, un espoir pour nos \u00e9toiles<\/strong><\/p>\n<p>\ud83d\udce7 aoa2.pournotreetoile@hotmail.com<\/p>\n<p>\ud83c\udf10 www.aoa2pournotreetoile.fr.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>L\u2019association AOA2, un espoir pour nos \u00e9toiles a tenu son Assembl\u00e9e G\u00e9n\u00e9rale annuelle le dimanche 29 mars \u00e0 la Salle [&hellip;]<\/p>\n","protected":false},"author":42,"featured_media":89899,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[20,25,5647,12,17],"tags":[987],"class_list":["post-89898","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-a-la-une","category-gerardmer","category-gerardmer-autres-sites","category-sante","category-vie-associative","tag-aoa2"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v22.5 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>AOA2, un espoir pour nos \u00e9toiles : des avanc\u00e9es scientifiques encourageantes et une mobilisation toujours aussi importante - Gerardmer Info<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" 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