{"id":526,"date":"2023-06-23T14:50:06","date_gmt":"2023-06-23T12:50:06","guid":{"rendered":"https:\/\/onlyproject.org\/our-mission\/"},"modified":"2025-10-28T13:17:22","modified_gmt":"2025-10-28T12:17:22","slug":"our-mission","status":"publish","type":"page","link":"https:\/\/onlyproject.org\/fr\/our-mission\/","title":{"rendered":"Notre organisation"},"content":{"rendered":"\r\n<section id=\"ac-block_31e1f8090d3abd6b22caa11ff5bc43a6\" class=\"block-page-title with-background \">\r\n\r\n    <div class=\"container\">\r\n        \r\n        <h1 class=\"title\">Des racines mon\u00e9gasques, un impact <em>international<\/em><\/h1>\r\n\r\n        \r\n    <\/div>\r\n    \r\n<\/section>\r\n\n\n\r\n<section id=\"ac-block_cc1d78ed07608484fd6f5d484b7f7d71\" class=\"block-structure-container-with-navigation\">\r\n\r\n    <div class=\"container has-sticky-element no-mobile-sticky\">\r\n                \r\n        <div class=\"navigation-container is-sticky-element\">\r\n            <p class=\"title\">Aller \u00e0 :<\/p>\r\n            <nav>\r\n                <ul>\r\n                                            <li><a href=\"#our-organisation\">Notre organisation<\/a><\/li>\r\n                                            <li><a href=\"#understanding-the-cause\">Comprendre la cause<\/a><\/li>\r\n                                            <li><a href=\"#our-history\">Notre histoire<\/a><\/li>\r\n                                            <li><a href=\"#governance\">Gouvernance<\/a><\/li>\r\n                                            <li><a href=\"#financials\">\u00c9tats financiers<\/a><\/li>\r\n                                            <li><a href=\"#ethics-compliance\">\u00c9thique &#038; Conformit\u00e9<\/a><\/li>\r\n                                    <\/ul>\r\n            <\/nav>\r\n\r\n            <button class=\"scroll-to-top\">Retour en haut<\/button>\r\n        <\/div>\r\n        \r\n        \r\n        <div class=\"content-container\">\r\n\r\n            \n\r\n<section id=\"our-organisation\" class=\"block-content-title\">\r\n    \r\n    <h2 class=\"title\"><p><em><span style=\"font-weight: 400;\">L&rsquo;<\/span><span style=\"font-weight: 400;\">Association Mon\u00e9gasque contre les Myopathies-<\/span><\/em><span style=\"font-weight: 400;\"><em>Only Project<\/em>, active sur le plan international depuis 2001, a pour mission de trouver un rem\u00e8de \u00e0 la myopathie de Duchenne, une maladie g\u00e9n\u00e9tique qui touche environ 1 gar\u00e7on sur 3500 et qui entra\u00eene une d\u00e9t\u00e9rioration progressive des muscles, une perte d&rsquo;autonomie et finalement un d\u00e9c\u00e8s pr\u00e9matur\u00e9.\u00a0<\/span><\/p>\n<\/h2>\r\n    \r\n<\/section>\n\n\r\n<section id=\"ac-block_46d7ba94d1fe426e42818387013772f4\" class=\"block-spacing spacing-80 background-transparent\">\r\n    <\/section>\r\n\n\n\r\n<section id=\"ac-block_1d8bb433a9e8f8a72debefd19378d9a6\" class=\"block-content-text has-wysiwyg-content\">\r\n    \r\n    <p><span style=\"font-weight: 400;\">L&rsquo;organisation poursuit cet objectif depuis plus de 20 ans, principalement en :<\/span><\/p>\n<ul>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Soutenant financi\u00e8rement des projets de recherche dans le but d&rsquo;\u00e9laborer et d&rsquo;affiner des solutions th\u00e9rapeutiques et d&rsquo;am\u00e9liorer les soins et la qualit\u00e9 de vie des patients,\u00a0\u00a0<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Favorisant les \u00e9changes entre chercheurs et m\u00e9decins afin de partager les connaissances et d&rsquo;acc\u00e9l\u00e9rer les avanc\u00e9es.\u00a0\u00a0<\/span><\/li>\n<\/ul>\n    \r\n<\/section>\n\n\r\n<section id=\"ac-block_46d7ba94d1fe426e42818387013772f4\" class=\"block-spacing spacing-80 background-transparent\">\r\n    <\/section>\r\n\n\n\r\n<section id=\"ac-block_f06026b8408dcb77b146e1110d661fc3\" class=\"block-content-text has-wysiwyg-content\">\r\n    \r\n    <p><span style=\"font-weight: 400;\">Voici quelques-uns de nos principes et valeurs cl\u00e9s :\u00a0<\/span><\/p>\n<ul>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Pr\u00e9server les moyens de notre <\/span><b>ind\u00e9pendance<\/b><span style=\"font-weight: 400;\"> afin d&rsquo;\u00eatre aussi agiles et efficaces que possible,\u00a0<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">\u00catre un soutien et un <\/span><b>partenaire fiable<\/b><span style=\"font-weight: 400;\"> tout au long du cycle de vie des projets,\u00a0<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">La <\/span><b>sobri\u00e9t\u00e9<\/b><span style=\"font-weight: 400;\"> en termes de d\u00e9penses de fonctionnement et une structure efficiente, <\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\">Un attachement profond \u00e0 la puissance de la <b>collaboration<\/b><span>.<\/span><\/li>\n<\/ul>\n    \r\n<\/section>\n\n\r\n<section id=\"ac-block_46d7ba94d1fe426e42818387013772f4\" class=\"block-spacing spacing-80 background-transparent\">\r\n    <\/section>\r\n\n\n\r\n<section id=\"understanding-the-cause\" class=\"block-content-title-separator style-normal\">\r\n    \r\n    <div class=\"title-container title-bar-style\">\r\n\r\n                    \r\n            <h2 class=\"title\">Comprendre la cause<\/h2>\r\n\r\n        \r\n    <\/div>\r\n    \r\n\r\n            <p><span style=\"font-weight: 400;\">Depuis 2001, la myopathie de Duchenne est au c\u0153ur de notre action. Voici quelques informations cl\u00e9s pour mieux comprendre cette maladie.\u00a0<\/span><\/p>\n    \r\n    \r\n<\/section>\n\n\r\n<section id=\"ac-block_46d7ba94d1fe426e42818387013772f4\" class=\"block-spacing spacing-80 background-transparent\">\r\n    <\/section>\r\n\n\n\r\n\r\n<section id=\"ac-block_185c8a0e0ef3eddd7dcb58b2ce37451d\" class=\"block-content-list-items style-columns\">\r\n\r\n    <div class=\"items\">\r\n                <div class=\"item\">\r\n            <div class=\"title-column\">\r\n                <h3 class=\"title underline-divider-min-1\">\r\n                    Description de la maladie                <\/h3>\r\n            <\/div>\r\n            <div class=\"content-column has-wysiwyg-content\">\r\n                <p><span style=\"font-weight: 400;\">La myopathie de Duchenne est une maladie g\u00e9n\u00e9tique qui touche environ <strong>1 gar\u00e7on sur 3500.<\/strong> Elle est caus\u00e9e par un d\u00e9faut dans la s\u00e9quence g\u00e9n\u00e9tique de la dystrophine, une prot\u00e9ine essentielle qui contribue au maintien de la structure et de la fonction musculaire. En l&rsquo;absence de dystrophine, les fibres musculaires se d\u00e9t\u00e9riorent avec le temps.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Le g\u00e8ne de la dystrophine (le plus long g\u00e8ne humain) est situ\u00e9 sur le chromosome X, de sorte que la myopathie de Duchenne touche presque exclusivement les gar\u00e7ons (les filles, qui ont un deuxi\u00e8me chromosome X, sont tr\u00e8s rarement touch\u00e9es).\u00a0<\/span><\/p>\n            <\/div>\r\n        <\/div>\r\n                <div class=\"item\">\r\n            <div class=\"title-column\">\r\n                <h3 class=\"title underline-divider-min-2\">\r\n                    Transmission                <\/h3>\r\n            <\/div>\r\n            <div class=\"content-column has-wysiwyg-content\">\r\n                <p><span style=\"font-weight: 400;\">La\u00a0 myopathie de Duchenne peut \u00eatre h\u00e9rit\u00e9e d&rsquo;un parent porteur, g\u00e9n\u00e9ralement la m\u00e8re, qui n&rsquo;est souvent pas consciente de son statut de porteuse en raison de l&rsquo;absence de sympt\u00f4mes. Dans certains cas, cependant, la maladie r\u00e9sulte d&rsquo;une mutation spontan\u00e9e qui se produit dans les cellules reproductrices, ce qui signifie qu&rsquo;il n&rsquo;y a pas d&rsquo;ant\u00e9c\u00e9dents familiaux.\u00a0<\/span><\/p>\n            <\/div>\r\n        <\/div>\r\n                <div class=\"item\">\r\n            <div class=\"title-column\">\r\n                <h3 class=\"title underline-divider-min-3\">\r\n                    Diagnostic                <\/h3>\r\n            <\/div>\r\n            <div class=\"content-column has-wysiwyg-content\">\r\n                <p><span style=\"font-weight: 400;\">La myopathie de Duchenne est g\u00e9n\u00e9ralement diagnostiqu\u00e9e vers l&rsquo;\u00e2ge de 4 ou 5 ans, lorsque des membres de la famille proche commencent \u00e0 remarquer des retards dans le d\u00e9veloppement moteur. Les sympt\u00f4mes comprennent souvent des chutes fr\u00e9quentes, des difficult\u00e9s \u00e0 courir, \u00e0 sauter ou \u00e0 monter les escaliers.\u00a0 Ces signes pr\u00e9coces incitent g\u00e9n\u00e9ralement \u00e0 une \u00e9valuation plus pouss\u00e9e, ce qui permet de poser le diagnostic.\u00a0\u00a0<\/span><\/p>\n            <\/div>\r\n        <\/div>\r\n                <div class=\"item\">\r\n            <div class=\"title-column\">\r\n                <h3 class=\"title underline-divider-min-1\">\r\n                    Cons\u00e9quences                <\/h3>\r\n            <\/div>\r\n            <div class=\"content-column has-wysiwyg-content\">\r\n                <p><span style=\"font-weight: 400;\">La myopathie de Duchenne est une maladie progressive dans laquelle les fibres musculaires &#8211; notamment celles du c\u0153ur &#8211; d\u00e9g\u00e9n\u00e8rent peu \u00e0 peu. L&rsquo;alt\u00e9ration des fonctions cardiaques et respiratoires est g\u00e9n\u00e9ralement un point critique in\u00e9vitable qui entra\u00eene une r\u00e9duction de l&rsquo;esp\u00e9rance de vie, de nombreuses personnes atteintes d\u00e9c\u00e9dant entre 19 et 30 ans.\u00a0<\/span><\/p>\n            <\/div>\r\n        <\/div>\r\n                <div class=\"item\">\r\n            <div class=\"title-column\">\r\n                <h3 class=\"title underline-divider-min-2\">\r\n                    Etat de la recherche                <\/h3>\r\n            <\/div>\r\n            <div class=\"content-column has-wysiwyg-content\">\r\n                <p><span style=\"font-weight: 400;\">\u00c0 ce jour, alors que les options de soins m\u00e9dicaux telles que la physioth\u00e9rapie, les m\u00e9dicaments pour g\u00e9rer les sympt\u00f4mes, les appareils orthop\u00e9diques et les fauteuils roulants verticaux ont am\u00e9lior\u00e9 le confort et prolong\u00e9 les fonctions cardiaques et respiratoires, il n&rsquo;existe actuellement aucun traitement permettant de remplacer la dystrophine, la prot\u00e9ine manquante essentielle \u00e0 l&rsquo;int\u00e9grit\u00e9 musculaire, \u00e0 des niveaux efficaces. Cette lacune souligne le besoin urgent de th\u00e9rapies innovantes capables de restaurer ou de compenser la perte de dystrophine.\u00a0<\/span><\/p>\n            <\/div>\r\n        <\/div>\r\n                <div class=\"item\">\r\n            <div class=\"title-column\">\r\n                <h3 class=\"title underline-divider-min-3\">\r\n                    Essai clinique                <\/h3>\r\n            <\/div>\r\n            <div class=\"content-column has-wysiwyg-content\">\r\n                <p><span style=\"font-weight: 400;\">Ces derni\u00e8res ann\u00e9es, des fonds substantiels collect\u00e9s par <\/span><a href=\"https:\/\/www.onlywatch.com\/\"><b>Only Watch<\/b><\/a><span style=\"font-weight: 400;\"> ont \u00e9t\u00e9 consacr\u00e9s au d\u00e9veloppement de compos\u00e9s th\u00e9rapeutiques prometteurs et \u00e0 la mise en place d&rsquo;un essai clinique pour une th\u00e9rapie d\u00e9velopp\u00e9e par SQY Therapeutics, une biotech \u00e0 but non lucratif (d\u00e9tenue par un fonds de dotation (Splice Fund) cr\u00e9\u00e9 par les associations).<\/span><\/p>\n            <\/div>\r\n        <\/div>\r\n                <div class=\"item\">\r\n            <div class=\"title-column\">\r\n                <h3 class=\"title underline-divider-min-1\">\r\n                    Prochaines \u00e9tapes                <\/h3>\r\n            <\/div>\r\n            <div class=\"content-column has-wysiwyg-content\">\r\n                <p><span style=\"font-weight: 400;\">L&rsquo;essai clinique symbolise le d\u00e9but d&rsquo;une nouvelle \u00e8re et d&rsquo;un impact \u00e0 plus grande \u00e9chelle pour notre association. Si les r\u00e9sultats sont positifs, la phase de s\u00e9curit\u00e9 sera suivie de phases d&rsquo;efficacit\u00e9 et du d\u00e9veloppement de m\u00e9dicaments similaires pour d&rsquo;autres types de d\u00e9l\u00e9tion sur le g\u00e8ne (il existe diff\u00e9rents types d\u2019anomalies g\u00e9n\u00e9tiques sur le m\u00eame g\u00e8ne qui conduisent \u00e0 la myopathie de Duchenne, le premier m\u00e9dicament d\u00e9velopp\u00e9 et test\u00e9 cible l&rsquo;exon 51).\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Parall\u00e8lement, parce que la th\u00e9rapie et les soins seront toujours pluriels et parce que le sujet est si vaste, l&rsquo;Association continuera \u00e0 financer des initiatives, de jeunes talents et de brillants esprits engag\u00e9s de toutes g\u00e9n\u00e9rations et dans tous types d&rsquo;environnements (h\u00f4pital, universit\u00e9, biotechs orient\u00e9es vers le patient&#8230;) sur des sujets tels que : l&rsquo;\u00e9volution du c\u0153ur dans la maladie de Duchenne, la capacit\u00e9 de cellules sanguines modifi\u00e9es \u00e0 r\u00e9parer le muscle, le d\u00e9veloppement de nouvelles techniques pour pr\u00e9lever du muscle sans douleur et sans cicatrice, la R&amp;D sur de nouveaux types d&rsquo;aides \u00e0 la mobilit\u00e9&#8230; et bien d&rsquo;autres encore.\u00a0<\/span><\/p>\n            <\/div>\r\n        <\/div>\r\n                <div class=\"item\">\r\n            <div class=\"title-column\">\r\n                <h3 class=\"title underline-divider-min-2\">\r\n                    Ouverture aux maladies g\u00e9n\u00e9tiques rares                <\/h3>\r\n            <\/div>\r\n            <div class=\"content-column has-wysiwyg-content\">\r\n                <p><span style=\"font-weight: 400;\">Le g\u00e8ne responsable de la myopathie de Duchenne est le plus long de l&rsquo;ADN humain, ce qui pose des d\u00e9fis uniques en mati\u00e8re de recherche et de traitement. La r\u00e9solution de ces probl\u00e8mes a donn\u00e9 lieu \u00e0 des innovations dans les techniques d&rsquo;\u00e9dition de g\u00e8nes, la r\u00e9paration des mutations et l&rsquo;administration de th\u00e9rapies, ouvrant ainsi de nouvelles voies prometteuses pour le traitement d&rsquo;autres maladies g\u00e9n\u00e9tiques. Lorsque nos recherches permettent des avanc\u00e9es dans d&rsquo;autres domaines, nous nous engageons \u00e0 encourager ces d\u00e9couvertes, en particulier pour les maladies rares pour lesquelles les financements sont rares.\u00a0<\/span><\/p>\n            <\/div>\r\n        <\/div>\r\n            <\/div>\r\n    \r\n<\/section>\r\n\r\n\n\n\r\n<section id=\"ac-block_46d7ba94d1fe426e42818387013772f4\" class=\"block-spacing spacing-80 background-transparent\">\r\n    <\/section>\r\n\n\n\r\n<section id=\"our-history\" class=\"block-content-title-separator style-normal\">\r\n    \r\n    <div class=\"title-container title-bar-style\">\r\n\r\n                    \r\n            <h2 class=\"title\">Notre histoire<\/h2>\r\n\r\n        \r\n    <\/div>\r\n    \r\n\r\n            <p><span style=\"font-weight: 400;\">C&rsquo;est le diagnostic de la myopathie de Duchenne de Philippe et Paul en 2000 qui a incit\u00e9 leurs parents, Ursula &amp; Franck Ferreyrolles et Luc &amp; Monique Pettavino, \u00e0 cr\u00e9er l&rsquo;<\/span><i><span style=\"font-weight: 400;\">Association Mon\u00e9gasque contre les Myopathies <\/span><\/i><span style=\"font-weight: 400;\">et \u00e0 collecter des fonds pour acc\u00e9l\u00e9rer la recherche de solutions th\u00e9rapeutiques.\u00a0<\/span><\/p>\n    \r\n    \r\n<\/section>\n\n\r\n<section id=\"ac-block_46d7ba94d1fe426e42818387013772f4\" class=\"block-spacing spacing-80 background-transparent\">\r\n    <\/section>\r\n\n\n\r\n\r\n<section id=\"ac-block_d17922b2832453290af79ef01db55958\" class=\"block-content-images\">\r\n\r\n    <div class=\"items count-2\">\r\n                    <div class=\"item type-image\">\r\n\r\n                                    <div class=\"image\">\r\n                        <div class=\"image-inner\">\r\n                            <img decoding=\"async\" src=\"https:\/\/onlyproject.org\/wp-content\/uploads\/2023\/06\/history-1.jpg\" alt=\"\" >                        <\/div>\r\n                    <\/div>\r\n                                <p class=\"caption\">Paul<\/p>\r\n            <\/div>\r\n                    <div class=\"item type-image\">\r\n\r\n                                    <div class=\"image\">\r\n                        <div class=\"image-inner\">\r\n                            <img decoding=\"async\" src=\"https:\/\/onlyproject.org\/wp-content\/uploads\/2024\/04\/young-philippe-ferreyrolles-1.jpg\" alt=\"\" >                        <\/div>\r\n                    <\/div>\r\n                                <p class=\"caption\">Philippe<\/p>\r\n            <\/div>\r\n            <\/div>\r\n\r\n<\/section>\r\n\r\n\n\n\r\n<section id=\"ac-block_46d7ba94d1fe426e42818387013772f4\" class=\"block-spacing spacing-80 background-transparent\">\r\n    <\/section>\r\n\n\n\r\n\r\n<section id=\"ac-block_edefcef2e01d583360c7d404992f00ca\" class=\"block-content-images\">\r\n\r\n    <div class=\"items count-1\">\r\n                    <div class=\"item type-image\">\r\n\r\n                                    <div class=\"image\">\r\n                        <div class=\"image-inner\">\r\n                            <img decoding=\"async\" src=\"https:\/\/onlyproject.org\/wp-content\/uploads\/2023\/06\/old-logo.png\" alt=\"\" >                        <\/div>\r\n                    <\/div>\r\n                                <p class=\"caption\"><\/p>\r\n            <\/div>\r\n            <\/div>\r\n\r\n<\/section>\r\n\r\n\n\n\r\n<section id=\"ac-block_46d7ba94d1fe426e42818387013772f4\" class=\"block-spacing spacing-80 background-transparent\">\r\n    <\/section>\r\n\n\n\r\n<section id=\"ac-block_fa99af2120a92ee6122131c396b70c49\" class=\"block-content-text has-wysiwyg-content\">\r\n    \r\n    <p><span style=\"font-weight: 400;\">D\u00e8s 2001, ils organisent des ventes aux ench\u00e8res autour de concepts uniques dans le domaine des arts et du luxe (The Mona Lisa Project, Adam &amp; Eve, Only One). En 2005, Luc Pettavino imagine <\/span><a href=\"https:\/\/www.onlywatch.com\/\"><b>Only Watch<\/b><\/a><span style=\"font-weight: 400;\">, une vente aux ench\u00e8res unique de montres qu&rsquo;il lance en 2005 avec 34 horlogers. Edition apr\u00e8s \u00e9dition, gr\u00e2ce \u00e0 une mobilisation et un engagement croissants de l&rsquo;industrie horlog\u00e8re, des collectionneurs et de tous les soutiens (m\u00e9dias, partenaires&#8230;), <\/span><a href=\"https:\/\/www.onlywatch.com\/\"><b>Only Watch<\/b><\/a><span style=\"font-weight: 400;\"> conna\u00eet une croissance fulgurante, permettant \u00e0 l&rsquo;Association de disposer de fonds consid\u00e9rables pour faire avancer sa cause : trouver un rem\u00e8de \u00e0 la dystrophie musculaire de Duchenne.\u00a0<\/span><\/p>\n<p><a href=\"https:\/\/onlyproject.org\/fr\/funds-ressources\/\"><b><i>Cliquez ici pour un aper\u00e7u de l&rsquo;histoire de notre collecte de fonds.<\/i><\/b><\/a><\/p>\n    \r\n<\/section>\n\n\r\n<section id=\"ac-block_46d7ba94d1fe426e42818387013772f4\" class=\"block-spacing spacing-80 background-transparent\">\r\n    <\/section>\r\n\n\n\r\n\r\n<section id=\"ac-block_063ed3b3e5363daa58e62634ebe8b8b0\" class=\"block-content-images\">\r\n\r\n    <div class=\"items count-2\">\r\n                    <div class=\"item type-image\">\r\n\r\n                                    <div class=\"image\">\r\n                        <div class=\"image-inner\">\r\n                            <img decoding=\"async\" src=\"https:\/\/onlyproject.org\/wp-content\/uploads\/2023\/06\/onlywatch-1.jpg\" alt=\"\" >                        <\/div>\r\n                    <\/div>\r\n                                <p class=\"caption\">Only Watch 2011 \u00e0 l&rsquo;h\u00f4tel Hermitage, Monte-Carlo<\/p>\r\n            <\/div>\r\n                    <div class=\"item type-image\">\r\n\r\n                                    <div class=\"image\">\r\n                        <div class=\"image-inner\">\r\n                            <img decoding=\"async\" src=\"https:\/\/onlyproject.org\/wp-content\/uploads\/2023\/06\/onlywatch-2.jpg\" alt=\"\" >                        <\/div>\r\n                    <\/div>\r\n                                <p class=\"caption\">Only Watch 2021 \u00e0 Palexpo, Gen\u00e8ve <\/p>\r\n            <\/div>\r\n            <\/div>\r\n\r\n<\/section>\r\n\r\n\n\n\r\n<section id=\"ac-block_46d7ba94d1fe426e42818387013772f4\" class=\"block-spacing spacing-80 background-transparent\">\r\n    <\/section>\r\n\n\n\r\n<section id=\"ac-block_5de699bf9e090130ee9b28d10001cdde\" class=\"block-content-text has-wysiwyg-content\">\r\n    \r\n    <p><span style=\"font-weight: 400;\">Avec plus de 20 ans d&rsquo;histoire, voici un petit film qui relie la chronologie de la collecte de fonds \u00e0 celle de la recherche (produit en 2023).<\/span><\/p>\n    \r\n<\/section>\n\n\r\n<section id=\"ac-block_46d7ba94d1fe426e42818387013772f4\" class=\"block-spacing spacing-80 background-transparent\">\r\n    <\/section>\r\n\n\n\r\n\r\n<section id=\"ac-block_57858dc4117b5c15584019a5bb57cd03\" class=\"block-content-images\">\r\n\r\n    <div class=\"items count-1\">\r\n                    <div class=\"item type-video\">\r\n\r\n                                    <div class=\"embed\">\r\n                        <iframe loading=\"lazy\" width=\"1280\" height=\"720\" src=\"https:\/\/www.youtube.com\/embed\/YXpCLv3mdGM\" title=\"The story of us: the Only project.\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" allowfullscreen><\/iframe>                    <\/div>\r\n                                <p class=\"caption\"><\/p>\r\n            <\/div>\r\n            <\/div>\r\n\r\n<\/section>\r\n\r\n\n\n\r\n<section id=\"ac-block_46d7ba94d1fe426e42818387013772f4\" class=\"block-spacing spacing-80 background-transparent\">\r\n    <\/section>\r\n\n\n\r\n<section id=\"governance\" class=\"block-content-title-separator style-normal\">\r\n    \r\n    <div class=\"title-container title-bar-style\">\r\n\r\n                    \r\n            <h2 class=\"title\">Gouvernance <\/h2>\r\n\r\n        \r\n    <\/div>\r\n    \r\n\r\n            <p>Voici un aper\u00e7u des instances de gouvernance de l&rsquo;association et de leurs r\u00f4les.<\/p>\n    \r\n    \r\n<\/section>\n\n\r\n<section id=\"ac-block_46d7ba94d1fe426e42818387013772f4\" class=\"block-spacing spacing-80 background-transparent\">\r\n    <\/section>\r\n\n\n\r\n\r\n<section id=\"ac-block_201c79eed20d93a14e566032b649890a\" class=\"block-content-list-items style-rows\">\r\n\r\n    <div class=\"items\">\r\n                <div class=\"item\">\r\n            <div class=\"title-column\">\r\n                <h3 class=\"title underline-divider-min-1\">\r\n                    Le conseil d&rsquo;administration                 <\/h3>\r\n            <\/div>\r\n            <div class=\"content-column has-wysiwyg-content\">\r\n                <p><span style=\"font-weight: 400;\">Le conseil d&rsquo;administration est compos\u00e9 de parents de gar\u00e7ons atteints de la myopathie de Duchenne qui se sont rassembl\u00e9s pour participer \u00e0 une acc\u00e9l\u00e9ration du chemin vers les th\u00e9rapies qui am\u00e9lioreraient et prolongeraient la vie de leurs fils. Aujourd&rsquo;hui, malgr\u00e9 la disparition de ces derniers, l&rsquo;association poursuit son travail avec la m\u00eame d\u00e9termination, pour toutes les personnes n\u00e9es avec la myopathie de Duchenne en attente de solutions.<\/span><\/p>\n<ul>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Luc Pettavino (Pr\u00e9sident et membre fondateur)\u00a0\u00a0<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Monique Pettavino (membre fondateur)\u00a0<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Ursula Ferreyrolles (membre fondateur)\u00a0\u00a0<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Franck Ferreyrolles (membre fondateur)\u00a0<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Pascal Ferr\u00e9 (rejoint en 2024)\u00a0<\/span><\/li>\n<li aria-level=\"1\">Tess Pettavino <span style=\"font-weight: 400;\">(rejoint en 2025)\u00a0\u00a0<\/span><\/li>\n<\/ul>\n            <\/div>\r\n        <\/div>\r\n                <div class=\"item\">\r\n            <div class=\"title-column\">\r\n                <h3 class=\"title underline-divider-min-2\">\r\n                     Le conseil scientifique, compos\u00e9 d&rsquo;experts et de chercheurs renomm\u00e9s                 <\/h3>\r\n            <\/div>\r\n            <div class=\"content-column has-wysiwyg-content\">\r\n                <p><span style=\"font-weight: 400;\">Le Conseil scientifique (CS) conseille le Conseil d&rsquo;administration sur son portefeuille de subventions scientifiques, en veillant \u00e0 ce que les projets financ\u00e9s soient conformes \u00e0 la mission et aux priorit\u00e9s de l&rsquo;Association. Compos\u00e9 d&rsquo;experts de premier plan (dans des domaines multidisciplinaires principalement ax\u00e9s sur la myopathie de Duchenne), les membres du CS \u00e9valuent les demandes pour la bourse \u00ab Pionnier\u00b7es \u00bb et fournissent des conseils strat\u00e9giques sur les domaines de recherche soutenus par l&rsquo;Association.\u00a0<\/span><\/p>\n<ul>\n<li>Karim Wahbi : Professeur d\u2019universit\u00e9 et cardiologue \u00e0 l\u2019Universit\u00e9 de Paris, coordonnant le site de l\u2019h\u00f4pital Cochin du Centre de R\u00e9f\u00e9rence des Maladies Neuromusculaires.<\/li>\n<li>Nathalie Goemans : P\u00e9diatre et neurologue sp\u00e9cialis\u00e9e dans les maladies neuromusculaires et la r\u00e9\u00e9ducation, ancienne responsable du Centre de R\u00e9f\u00e9rence Neuromusculaire P\u00e9diatrique des H\u00f4pitaux Universitaires de Louvain, actuellement Professeur \u00e9m\u00e9rite.<\/li>\n<li>Annemieke Aartsma-Rus : Professeure de G\u00e9n\u00e9tique Translationnelle au Leiden University Medical Center et professeure invit\u00e9e \u00e0 l\u2019Universit\u00e9 de Newcastle.<\/li>\n<li>France Leturcq : Responsable du diagnostic g\u00e9n\u00e9tique des myopathies \u00e0 l\u2019H\u00f4pital Cochin \u00e0 Paris.<\/li>\n<li>Denis Furling : Directeur de Recherche au CNRS bas\u00e9 \u00e0 Paris et responsable de l\u2019\u00e9quipe CRM, sp\u00e9cialis\u00e9e dans la dystrophie myotonique de type 1 (DM1).<\/li>\n<\/ul>\n            <\/div>\r\n        <\/div>\r\n                <div class=\"item\">\r\n            <div class=\"title-column\">\r\n                <h3 class=\"title underline-divider-min-3\">\r\n                    Le Comit\u00e9 strat\u00e9gique des partenaires et des soutiens                <\/h3>\r\n            <\/div>\r\n            <div class=\"content-column has-wysiwyg-content\">\r\n                <p><span style=\"font-weight: 400;\">Le r\u00f4le du Comit\u00e9 strat\u00e9gique est de conseiller le Conseil d&rsquo;administration sur la strat\u00e9gie de l&rsquo;Association. Soutiens de longue date du projet AMM-Only et acteurs de son succ\u00e8s au fil des ann\u00e9es, les membres du Comit\u00e9 strat\u00e9gique sont impliqu\u00e9s dans diverses d\u00e9cisions, y compris, mais sans s&rsquo;y limiter, l&rsquo;attribution de certaines subventions.\u00a0<\/span><\/p>\n<p><i><span style=\"font-weight: 400;\">La liste des membres publi\u00e9e ult\u00e9rieurement.\u00a0\u00a0<\/span><\/i><\/p>\n            <\/div>\r\n        <\/div>\r\n            <\/div>\r\n    \r\n<\/section>\r\n\r\n\n\n\r\n<section id=\"ac-block_46d7ba94d1fe426e42818387013772f4\" class=\"block-spacing spacing-80 background-transparent\">\r\n    <\/section>\r\n\n\n\r\n<section id=\"financials\" class=\"block-content-title-separator style-normal\">\r\n    \r\n    <div class=\"title-container title-bar-style\">\r\n\r\n                    \r\n            <h2 class=\"title\">\u00c9tats financiers<\/h2>\r\n\r\n        \r\n    <\/div>\r\n    \r\n\r\n            <p><span style=\"font-weight: 400;\">L&rsquo;essentiel de nos ressources (&gt;90%) provient de ventes aux ench\u00e8res biennales uniques (principalement <\/span><a href=\"https:\/\/www.onlywatch.com\/\"><b>Only Watch<\/b><\/a><span style=\"font-weight: 400;\">, depuis 2005). L&rsquo;association re\u00e7oit \u00e9galement quelques dons de particuliers et d&rsquo;organismes d\u00e9sireux de soutenir la cause. Enfin, AMM-Only Project dispose \u00e9galement de revenus financiers issus de son capital.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Nos comptes sont certifi\u00e9s par un Commissaire aux Comptes ind\u00e9pendant, M. Christian Boisson, du cabinet Grant Thornton Monaco. Nos \u00e9tats financiers et certifications sont disponibles sur les liens suivants :\u00a0\u00a0<\/span><\/p>\n<ul>\n<li aria-level=\"1\"><span style=\"font-weight: 400;\">Ann\u00e9e fiscale 2024 : <a href=\"https:\/\/onlyproject.org\/wp-content\/uploads\/2025\/05\/AMM-OP-attestation-CAC-2024.pdf\">Rapport du commissaire aux comptes et \u00e9tats financiers d\u00e9taill\u00e9s<\/a>.\u00a0<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Ann\u00e9e fiscale 2023 :\u202f<\/span><a href=\"https:\/\/onlywatchteam.sharepoint.com\/:b:\/s\/AssociationMongasquecontrelesMyopathies\/EeLW9fhm7O1Dgdq5i4LbYgoBSY72bLL28fyjXwMBf8rWFA?e=JaS287\"><span style=\"font-weight: 400;\">Rapport du commissaire aux comptes<\/span><\/a><span style=\"font-weight: 400;\">, <\/span><a href=\"https:\/\/onlywatchteam.sharepoint.com\/:b:\/s\/AssociationMongasquecontrelesMyopathies\/ETqVkswSr0BFjbUweiomcocBE1IyN38e-VpoAUzB2i3OvQ?e=Lv8B7Z\"><span style=\"font-weight: 400;\">\u00e9tats financiers d\u00e9taill\u00e9s (y compris l&rsquo;annexe d&rsquo;analyse des d\u00e9penses)<\/span><\/a><span style=\"font-weight: 400;\">.\u00a0<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Ann\u00e9e fiscale 2022 : <\/span><a href=\"https:\/\/onlywatchteam.sharepoint.com\/:b:\/s\/AssociationMongasquecontrelesMyopathies\/EXdlVq0estpGmCkZ3PaJ_R4B6aJ7j1C0LIy6z5DGfebGNg?e=26k3hj\"><span style=\"font-weight: 400;\">Rapport du commissaire aux comptes<\/span><\/a><span style=\"font-weight: 400;\">, <\/span><a href=\"https:\/\/onlywatchteam.sharepoint.com\/:b:\/s\/AssociationMongasquecontrelesMyopathies\/EUmKlfd1-EJEv55OdeyMAfgB-PQl4eJGh2JtxuHFTe-4fg?e=b0gVA4\"><span style=\"font-weight: 400;\">\u00e9tats financiers d\u00e9taill\u00e9s<\/span><\/a><span style=\"font-weight: 400;\">, <\/span><a href=\"https:\/\/onlywatchteam.sharepoint.com\/:b:\/s\/AssociationMongasquecontrelesMyopathies\/ERxT9mfdmDVPpzd_kLaRujUBwBnlYJ5m9RuV21_5DoHEAQ?e=NjnwFS\"><span style=\"font-weight: 400;\">annexe d&rsquo;analyse des d\u00e9penses<\/span><\/a><span style=\"font-weight: 400;\">.\u00a0<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Ann\u00e9e fiscale 2021 :\u202f<\/span><a href=\"https:\/\/onlywatchteam.sharepoint.com\/:b:\/s\/AssociationMongasquecontrelesMyopathies\/EcBGX9rl3aBCsb-ITkEKJdoBzamvO5aUePQgIUxoXiqphA?e=dRT8cZ\"><span style=\"font-weight: 400;\">Rapport du commissaire aux comptes<\/span><\/a><span style=\"font-weight: 400;\">, <\/span><a href=\"https:\/\/onlywatchteam.sharepoint.com\/:b:\/s\/AssociationMongasquecontrelesMyopathies\/EQ16p7gOOjRNiFj6KVkqtB8BRBh_Z71pDisitn3sl1mqpw?e=qnKwvG\"><span style=\"font-weight: 400;\">\u00e9tats financiers d\u00e9taill\u00e9s<\/span><\/a><span style=\"font-weight: 400;\">, <\/span><a href=\"https:\/\/onlywatchteam.sharepoint.com\/:b:\/s\/AssociationMongasquecontrelesMyopathies\/EfMFKLk3fw1FndANFzUzyp4BkHo1SVLCIImUGWK3ohkk0A?e=OWnbig\"><span style=\"font-weight: 400;\">annexe sur l&rsquo;analyse des d\u00e9penses\u00a0<\/span><\/a><\/li>\n<\/ul>\n<p>&nbsp;<\/p>\n<ul>\n<li style=\"list-style-type: none;\"><\/li>\n<\/ul>\n    \r\n    \r\n<\/section>\n\n\r\n<section id=\"ac-block_46d7ba94d1fe426e42818387013772f4\" class=\"block-spacing spacing-80 background-transparent\">\r\n    <\/section>\r\n\n\n\r\n<section id=\"ethics-compliance\" class=\"block-content-title-separator style-normal\">\r\n    \r\n    <div class=\"title-container title-bar-style\">\r\n\r\n                    \r\n            <h2 class=\"title\">\u00c9thique &#038; Conformit\u00e9  <\/h2>\r\n\r\n        \r\n    <\/div>\r\n    \r\n\r\n            <p><span style=\"font-weight: 400;\">Tous les membres de l&rsquo;association doivent remplir et signer notre <\/span><a href=\"https:\/\/onlywatchteam.sharepoint.com\/:b:\/s\/AssociationMongasquecontrelesMyopathies\/EWO0mZjJSQZFk2AOswd8piMBw4zfgJStKs3jqc83kSzDrQ?e=b4kLZc\"><span style=\"font-weight: 400;\">Charte \u00e9thique<\/span><\/a><span style=\"font-weight: 400;\"> et une d\u00e9claration d&rsquo;int\u00e9r\u00eat. Tous les membres du personnel sont tenus de conna\u00eetre et de respecter un guide de proc\u00e9dures internes qui d\u00e9crit tous les processus et obligations auxquels l&rsquo;association est soumise.\u00a0<\/span><\/p>\n<p>&nbsp;<\/p>\n<p><span style=\"font-weight: 400;\">Lorsque nous distribuons des fonds et accordons des subventions, notre approche est principalement guid\u00e9e par la recherche de l&rsquo;excellence et de l&rsquo;innovation, ainsi que par notre d\u00e9sir de permettre aux chercheurs de donner le meilleur d&rsquo;eux-m\u00eames et de faire progresser les connaissances. Dans le cadre de l&rsquo;octroi de subventions, nous accordons une attention particuli\u00e8re aux points suivants :\u00a0<\/span><\/p>\n<p>&nbsp;<\/p>\n<p><b><i>La responsabilit\u00e9 :<\/i><\/b><i><span style=\"font-weight: 400;\"> Les b\u00e9n\u00e9ficiaires de subventions sont tenus d&rsquo;adh\u00e9rer \u00e0 notre charte \u00e9thique et d&rsquo;assurer un rapport et un suivi clairs, garantissant que les fonds sont utilis\u00e9s aux fins pr\u00e9vues.\u00a0<\/span><\/i><\/p>\n<p><b><i>L\u2019int\u00e9grit\u00e9 : <\/i><\/b><i><span style=\"font-weight: 400;\">Les d\u00e9cisions de financement sont prises sur la base du m\u00e9rite et s&rsquo;alignent sur la mission de l&rsquo;association, en minimisant les conflits d&rsquo;int\u00e9r\u00eats. Les projets s\u00e9lectionn\u00e9s font l&rsquo;objet d&rsquo;un processus d&rsquo;\u00e9valuation \u00e9quitable et approfondi.\u00a0<\/span><\/i><\/p>\n<p><b><i>La transparence : <\/i><\/b><i><span style=\"font-weight: 400;\">Tous les financements\/d\u00e9penses effectu\u00e9s par l&rsquo;association sont rendus publics par le biais d&rsquo;\u00e9tats financiers annuels.\u00a0<\/span><\/i><\/p>\n    \r\n    \r\n<\/section>\n\r\n\r\n        <\/div>\r\n\r\n\r\n    <\/div>\r\n<\/section>\r\n\n\n\r\n<section id=\"ac-block_46d7ba94d1fe426e42818387013772f4\" class=\"block-spacing spacing-80 background-transparent\">\r\n    <\/section>\r\n\n\n\r\n<section id=\"ac-block_8ef944f234b2fd92e640c247214821bf\" class=\"block-highlight background-blue-purple\">\r\n\r\n    <div class=\"container\">\r\n        <div class=\"contents\">\r\n                            <h2 class=\"title\">Projets &#038; Communaut\u00e9<\/h2>\r\n                \r\n            <p>Nous soutenons les chercheuses et chercheurs de diff\u00e9rents horizons dans le but de trouver un rem\u00e8de \u00e0 la maladie de Duchenne et d&rsquo;all\u00e9ger les souffrances.<\/p>\r\n    \r\n            <a href=\"https:\/\/onlyproject.org\/fr\/projets-communaute\/\" class=\"button-on-color button\" target=\"\">D\u00e9couvrez nos programmes et les projets soutenus<\/a>        <\/div>\r\n        \r\n    <\/div>\r\n    \r\n<\/section>\r\n","protected":false},"excerpt":{"rendered":"","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-526","page","type-page","status-publish","hentry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.3 - 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