{"id":1236,"date":"2024-11-06T07:00:00","date_gmt":"2024-11-06T06:00:00","guid":{"rendered":"https:\/\/onlyproject.org\/?p=1236"},"modified":"2024-11-05T23:44:26","modified_gmt":"2024-11-05T22:44:26","slug":"lassociation-monegasque-contre-les-myopathies-only-project-amplifie-ses-programmes-de-soutien-a-la-recherche-et-renforce-sa-gouvernance","status":"publish","type":"post","link":"https:\/\/onlyproject.org\/fr\/lassociation-monegasque-contre-les-myopathies-only-project-amplifie-ses-programmes-de-soutien-a-la-recherche-et-renforce-sa-gouvernance\/","title":{"rendered":"L\u2019Association Mon\u00e9gasque contre les Myopathies-Only Project amplifie ses programmes de soutien \u00e0 la recherche et renforce sa gouvernance"},"content":{"rendered":"\n<p><strong>Monaco, le 6 novembre 2024&nbsp;\u2013 <\/strong>Gr\u00e2ce \u00e0 l\u2019apport extraordinaire de la haute horlogerie depuis 2005, l\u2019Association Mon\u00e9gasque contre les Myopathies-Only Project (\u00ab&nbsp;AMM-Only Project&nbsp;\u00bb) a pu r\u00e9colter pr\u00e8s de 130 millions d&rsquo;euros pour mener \u00e0 bien sa mission vers les th\u00e9rapies sur la myopathie de Duchenne, une maladie g\u00e9n\u00e9tique qui touche environ 1 gar\u00e7on sur 3&nbsp;500 et entra\u00eene une d\u00e9t\u00e9rioration progressive des muscles, une perte d\u2019autonomie et un d\u00e9c\u00e8s pr\u00e9matur\u00e9.<\/p>\n\n\n\n<p>Depuis sa cr\u00e9ation en 2001, l\u2019association a organis\u00e9 des rencontres d\u00e9terminantes entre des chercheurs du monde entier autour des avanc\u00e9es de la science et de la m\u00e9decine sur les myopathies, financ\u00e9 des programmes de recherche collaboratifs, de tr\u00e8s nombreux projets port\u00e9s par des scientifiques de tous horizons, en milieu hospitalier ou universitaire, ainsi que ses propres programmes de R&amp;D au sein de startups. Aujourd\u2019hui, un essai clinique \u201c<em>first in human<\/em>\u201d de phase 1\/2A<a id=\"_ftnref1\" href=\"#_ftn1\">[1]<\/a> est men\u00e9 par des scientifiques soutenus par l\u2019AMM-Only Project sur une nouvelle mol\u00e9cule qui pourrait changer la donne pour de nombreux patients.<\/p>\n\n\n\n<p><\/p>\n\n\n\n<p>L\u2019association a \u00e9galement apport\u00e9 des financements cl\u00e9s \u00e0 des projets portant sur d\u2019autres pistes th\u00e9rapeutiques, permettant le d\u00e9veloppement des connaissances sur la maladie et la cr\u00e9ation d\u2019outils visant \u00e0 un meilleur diagnostic et \u00e0 une am\u00e9lioration de la prise en charge de cette pathologie. Dans les prochains mois, de nouveaux programmes seront lanc\u00e9s afin de continuer \u00e0 d\u00e9velopper la contribution \u00e0 la science et la m\u00e9decine au b\u00e9n\u00e9fice des patients en attente de solutions partout dans le monde.<\/p>\n\n\n\n<p><\/p>\n\n\n\n<p><\/p>\n\n\n\n<p>C\u2019est dans cette dynamique que l\u2019AMM-Only Project renforce son \u00e9quipe et sa gouvernance&nbsp;notamment <em>via<\/em> la cr\u00e9ation d\u2019un Comit\u00e9 strat\u00e9gique rejoint par des professionnels reconnus, dont des personnalit\u00e9s de l\u2019industrie horlog\u00e8re, ainsi que d\u2019un Conseil scientifique compos\u00e9 de profils internationaux issus de la recherche m\u00e9dicale et scientifique. Ces instances, dont la liste des membres sera communiqu\u00e9e courant janvier 2025, ont notamment pour mission de contribuer \u00e0 d\u00e9finir les axes d\u2019action de l\u2019association et \u00e0 s\u00e9lectionner les projets \u00e0 soutenir.<\/p>\n\n\n\n<p><\/p>\n\n\n\n<p><\/p>\n\n\n\n<p>Enfin, les r\u00e9sultats des 10 \u00e9ditions d\u2019Only Watch organis\u00e9es entre 2005 et 2024 offrent \u00e0 l&rsquo;AMM-Only Project les moyens n\u00e9cessaires de poursuivre et amplifier ses engagements sur les prochaines ann\u00e9es sans n\u00e9cessit\u00e9 d\u2019organiser un nouvel \u00e9v\u00e9nement de lev\u00e9e de fonds \u00e0 court terme. Le Conseil d\u2019administration de l\u2019association a ainsi pris la d\u00e9cision de ne pas programmer de nouvelle \u00e9dition d\u2019Only Watch.<\/p>\n\n\n\n<p><\/p>\n\n\n\n<p><\/p>\n\n\n\n<p><\/p>\n\n\n\n<p>Luc Pettavino, Pr\u00e9sident de l\u2019AMM-Only Project et fondateur d\u2019Only Watch : \u00ab Gr\u00e2ce \u00e0 un maillage collaboratif unique, \u00e0 un travail immense de toutes ses composantes, l\u2019horlogerie et son \u00e9cosyst\u00e8me irriguent aujourd\u2019hui l\u2019espoir de vie des patients atteints de myopathies et permettent \u00e0 la recherche de progresser vers les th\u00e9rapies. En deux d\u00e9cennies, l\u2019Association Mon\u00e9gasque contre les Myopathies-Only Project est devenue l\u2019un des <em>\u00ab&nbsp;game changers<\/em>&nbsp;\u00bb dans ce domaine.<\/p>\n\n\n\n<p><\/p>\n\n\n\n<p>Les 10 \u00e9ditions de l\u2019iconique vente aux ench\u00e8res Only Watch, et ses plus de 440 montres pi\u00e8ces uniques cr\u00e9\u00e9es et vendues pour l\u2019occasion, ont \u00e9galement eu un impact tr\u00e8s positif sur la haute horlogerie, lui offrant une visibilit\u00e9 internationale accrue et des records du monde sur tous les plans&nbsp;: celui de la valeur mais \u00e9galement celui de l\u2019empathie et de l\u2019unit\u00e9. C\u2019est en effet tout un secteur qui s\u2019est f\u00e9d\u00e9r\u00e9 pour combattre une maladie infantile l\u00e9tale.<\/p>\n\n\n\n<p><\/p>\n\n\n\n<p>Aujourd\u2019hui les r\u00e9serves financi\u00e8res de l\u2019association sont suffisamment importantes pour faire face aux besoins des programmes existants, notamment la poursuite en toute ind\u00e9pendance de l\u2019essai clinique \u00ab&nbsp;<em>first in human<\/em> \u00bb en cours, mais aussi de lancer des axes nouveaux qui permettront d\u2019aider les talents des g\u00e9n\u00e9rations montantes de la recherche et d\u2019amplifier encore notre action.<\/p>\n\n\n\n<p><\/p>\n\n\n\n<p>Les liens avec les femmes et les hommes de l\u2019horlogerie restent, et s\u2019amplifient m\u00eame, par la cr\u00e9ation d\u2019un comit\u00e9 strat\u00e9gique dans lequel ils seront fortement repr\u00e9sent\u00e9s et pourront continuer \u00e0 partager cet engagement commun de longue date vers les th\u00e9rapies.<\/p>\n\n\n\n<p><\/p>\n\n\n\n<p>C\u2019est avec une reconnaissance infinie envers tous les acteurs de l\u2019espoir que je partage ces nouvelles.&nbsp;\u00bb<\/p>\n\n\n\n<p><\/p>\n\n\n\n<p><\/p>\n\n\n\n<p>Tess Pettavino, Directrice de l\u2019AMM-Only Project&nbsp;: \u00ab&nbsp;Gr\u00e2ce aux soutiens de nos g\u00e9n\u00e9reux donateurs et partenaires, nous avons aujourd\u2019hui des moyens financiers suffisants pour nous permettre d\u2019aborder sereinement les prochaines phases de la recherche. Fermement ancr\u00e9s dans notre mission historique de trouver une th\u00e9rapie pour la myopathie de Duchenne, nous allons soutenir la poursuite des essais cliniques, accompagner de nouveaux programmes de recherche et d\u00e9velopper notre fonds de dotation pour lutter contre la myopathie de Duchenne et les maladies g\u00e9n\u00e9tiques apparent\u00e9es.&nbsp;\u00bb<\/p>\n\n\n\n<p>Pour plus d\u2019informations sur le travail men\u00e9 par l\u2019association et suivre nos actualit\u00e9s, rendez-vous sur le site <a href=\"https:\/\/onlyproject.org\/\">onlyproject.org<\/a> et sur la newsletter de l\u2019AMM-Only Project.<\/p>\n\n\n\n<p><\/p>\n\n\n\n<p class=\"has-text-align-center\">*****&nbsp;<\/p>\n\n\n\n<p><\/p>\n\n\n\n<p>Une pr\u00e9sentation de l\u2019AMM-Only Project, son histoire, ses finances et ses projets est \u00e9galement <a href=\"https:\/\/onlywatchteam.sharepoint.com\/:b:\/s\/AssociationMongasquecontrelesMyopathies\/EcHzUzsYpUFMqfYP7RJacAMBxEaZpaqLJgpNh_uotggQYg?e=geCGjA\">t\u00e9l\u00e9chargeable sur le pr\u00e9sent lien.<\/a>&nbsp;<\/p>\n\n\n\n<p><\/p>\n\n\n\n<p><strong>Calendrier&nbsp;:<\/strong> publication du rapport annuel 2024 d\u00e9but 2025.<\/p>\n\n\n\n<p><\/p>\n\n\n\n<p><strong>Contact\u202f:&nbsp;<\/strong>&nbsp;<a href=\"mailto:media@onlyproject.org\">media@onlyproject.org<\/a> &#8211; Ali\u00e9nor Miens &#8211; +33 (0)6 64 32 81 75&nbsp;<\/p>\n\n\n\n<p><\/p>\n\n\n\n<p><\/p>\n\n\n\n<p><\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<p><a id=\"_ftn1\" href=\"#_ftnref1\">[1]<\/a> (AVANCE-1, EUCT N\u00b0 2022-500703-49-01 authorised by ANSM\/EMA on 21\/11\/2022)<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Monaco, le 6 novembre 2024&nbsp;\u2013 Gr\u00e2ce \u00e0 l\u2019apport extraordinaire de la haute horlogerie depuis 2005, l\u2019Association Mon\u00e9gasque contre les Myopathies-Only Project (\u00ab&nbsp;AMM-Only Project&nbsp;\u00bb) a pu r\u00e9colter pr\u00e8s de 130 millions d&rsquo;euros pour mener \u00e0 bien&#8230;<\/p>\n","protected":false},"author":3,"featured_media":1238,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[9],"tags":[],"class_list":["post-1236","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-non-classifiee"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.3 - 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