{"id":27322,"date":"2025-12-11T14:31:58","date_gmt":"2025-12-11T22:31:58","guid":{"rendered":"https:\/\/myotonic.org\/notre-histoire-2\/"},"modified":"2026-08-27T17:00:11","modified_gmt":"2026-08-28T00:00:11","slug":"notre-histoire","status":"publish","type":"page","link":"https:\/\/myotonic.org\/fr\/notre-histoire\/","title":{"rendered":"Notre histoire"},"content":{"rendered":"\t\t<div data-elementor-type=\"wp-page\" data-elementor-id=\"27322\" class=\"elementor elementor-27322\" data-elementor-post-type=\"page\">\n\t\t\t\t<div class=\"elementor-element elementor-element-221d7d6 e-flex e-con-boxed e-con e-parent\" data-id=\"221d7d6\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;,&quot;jet_parallax_layout_list&quot;:[]}\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t<div class=\"elementor-element elementor-element-28fbb0fc e-con-full e-flex e-con e-child\" data-id=\"28fbb0fc\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;jet_parallax_layout_list&quot;:[]}\">\n\t\t\t\t<div class=\"elementor-element elementor-element-2527bd22 elementor-align-left elementor-widget elementor-widget-breadcrumbs\" data-id=\"2527bd22\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"breadcrumbs.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<nav><\/nav>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-18986977 elementor-widget__width-initial elementor-widget elementor-widget-heading\" data-id=\"18986977\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h1 class=\"elementor-heading-title elementor-size-default\">Histoire de la fondation<\/h1>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-19ac7b07 elementor-widget-laptop__width-initial elementor-widget__width-initial elementor-widget elementor-widget-heading\" data-id=\"19ac7b07\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<p class=\"elementor-heading-title elementor-size-default\">Renforcer la communaut\u00e9 DM par le soutien, les soins, la d\u00e9fense des droits et la recherche qui nous rapprochent des traitements et d'un rem\u00e8de.<\/p>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-1521ecbd e-con-full e-flex e-con e-child\" data-id=\"1521ecbd\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;jet_parallax_layout_list&quot;:[]}\">\n\t\t\t\t<div class=\"elementor-element elementor-element-5887f290 elementor-widget elementor-widget-button\" data-id=\"5887f290\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"button.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<div class=\"elementor-button-wrapper\">\n\t\t\t\t\t<a class=\"elementor-button elementor-button-link elementor-size-sm\" href=\"#learn-more\">\n\t\t\t\t\t\t<span class=\"elementor-button-content-wrapper\">\n\t\t\t\t\t\t\t\t\t<span class=\"elementor-button-text\">Faites d\u00e9filer pour en savoir plus<\/span>\n\t\t\t\t\t<\/span>\n\t\t\t\t\t<\/a>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-59e2c2ab e-con-full e-flex e-con e-child\" data-id=\"59e2c2ab\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;jet_parallax_layout_list&quot;:[]}\">\n\t\t\t\t<div class=\"elementor-element elementor-element-74642d3 elementor-widget-tablet__width-initial elementor-widget elementor-widget-image\" data-id=\"74642d3\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img fetchpriority=\"high\" decoding=\"async\" width=\"800\" height=\"534\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/history-featured-1-1024x683.jpg\" class=\"attachment-large size-large wp-image-27329\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/history-featured-1-1024x683.jpg 1024w, https:\/\/myotonic.org\/wp-content\/uploads\/history-featured-1-300x200.jpg 300w, https:\/\/myotonic.org\/wp-content\/uploads\/history-featured-1-768x512.jpg 768w, https:\/\/myotonic.org\/wp-content\/uploads\/history-featured-1.jpg 1300w\" sizes=\"(max-width: 800px) 100vw, 800px\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-59c61203 e-flex e-con-boxed e-con e-parent\" data-id=\"59c61203\" data-element_type=\"container\" data-e-type=\"container\" id=\"learn-more\" data-settings=\"{&quot;jet_parallax_layout_list&quot;:[]}\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t<div class=\"elementor-element elementor-element-613a1344 e-con-full e-flex e-con e-child\" data-id=\"613a1344\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;jet_parallax_layout_list&quot;:[]}\">\n\t\t\t\t<div class=\"elementor-element elementor-element-c6694a9 elementor-widget-tablet__width-initial elementor-widget elementor-widget-image\" data-id=\"c6694a9\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img decoding=\"async\" src=\"https:\/\/mr66givry2-staging.onrocket.site\/wp-content\/uploads\/community-and-cure-img.jpg\" title=\"\" alt=\"\" loading=\"lazy\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-66d793c8 e-con-full e-flex e-con e-child\" data-id=\"66d793c8\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;jet_parallax_layout_list&quot;:[]}\">\n\t\t\t\t<div class=\"elementor-element elementor-element-773f9388 elementor-widget__width-initial elementor-widget elementor-widget-heading\" data-id=\"773f9388\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Communaut\u00e9, prise en charge et gu\u00e9rison<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-1622aadc elementor-widget-tablet__width-initial elementor-widget elementor-widget-text-editor\" data-id=\"1622aadc\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p>La Myotonic Dystrophy Foundation (MDF) a \u00e9t\u00e9 fond\u00e9e en Californie en 2007 en tant qu\u2019organisation \u00e0 but non lucratif 501(c)(3). Depuis le d\u00e9but, la MDF travaille aux c\u00f4t\u00e9s des personnes vivant avec la dystrophie myotonique (DM), de leurs familles, des proches aidants, des cliniciens, des chercheurs et des d\u00e9fenseurs pour b\u00e2tir une communaut\u00e9 plus forte et plus connect\u00e9e et am\u00e9liorer l\u2019avenir de la DM. <\/p><p>Aujourd\u2019hui, la MDF est la plus grande organisation mondiale de d\u00e9fense des patients ax\u00e9e sur la dystrophie myotonique, servant des milliers d\u2019individus et de familles dans plus de 139 pays. Ensemble, avec notre communaut\u00e9 et nos sympathisants, la MDF a collect\u00e9 et investi plus de 39 millions de dollars pour am\u00e9liorer les soins, faire progresser la recherche et soutenir le d\u00e9veloppement de nouveaux traitements pour la DM. <\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-7fa8f44b e-con-full e-flex e-con e-child\" data-id=\"7fa8f44b\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;jet_parallax_layout_list&quot;:[]}\">\n\t\t\t\t<div class=\"elementor-element elementor-element-4e7352e5 elementor-widget elementor-widget-button\" data-id=\"4e7352e5\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"button.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<div class=\"elementor-button-wrapper\">\n\t\t\t\t\t<a class=\"elementor-button elementor-button-link elementor-size-sm\" href=\"https:\/\/myotonic.org\/fr\/notre-impact\/\">\n\t\t\t\t\t\t<span class=\"elementor-button-content-wrapper\">\n\t\t\t\t\t\t\t\t\t<span class=\"elementor-button-text\">En savoir plus sur notre impact<\/span>\n\t\t\t\t\t<\/span>\n\t\t\t\t\t<\/a>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-43ee5f2e e-flex e-con-boxed e-con e-parent\" data-id=\"43ee5f2e\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;jet_parallax_layout_list&quot;:[]}\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t<div class=\"elementor-element elementor-element-1a742152 e-con-full e-flex e-con e-child\" data-id=\"1a742152\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;jet_parallax_layout_list&quot;:[]}\">\n\t\t\t\t<div class=\"elementor-element elementor-element-6a10b636 elementor-widget__width-initial elementor-widget elementor-widget-heading\" data-id=\"6a10b636\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Jalons de l\u2019histoire de la MDF<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-50f29da9 elementor-widget-tablet__width-initial elementor-widget elementor-widget-text-editor\" data-id=\"50f29da9\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p>Ce qui a commenc\u00e9 par des familles demandant \u00e0 \u00eatre entendues est devenu une organisation qui relie les gens \u00e0 un soutien et \u00e0 des soins de confiance, pr\u00e9pare le terrain pour les essais cliniques, renforce la voix de la communaut\u00e9 dans les d\u00e9cisions publiques et investit dans la recherche vers des traitements et une gu\u00e9rison.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-5402dc7 e-con-full e-flex e-con e-child\" data-id=\"5402dc7\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;jet_parallax_layout_list&quot;:[]}\">\n\t\t\t\t<div class=\"elementor-element elementor-element-21359cc7 elementor-widget-tablet__width-initial elementor-widget elementor-widget-image\" data-id=\"21359cc7\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img decoding=\"async\" src=\"https:\/\/mr66givry2-staging.onrocket.site\/wp-content\/uploads\/history-of-name-and-brand-mdf.jpg\" title=\"\" alt=\"\" loading=\"lazy\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-3d49bdce e-flex e-con-boxed e-con e-parent\" data-id=\"3d49bdce\" data-element_type=\"container\" data-e-type=\"container\" id=\"learn-more\" data-settings=\"{&quot;jet_parallax_layout_list&quot;:[]}\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t\t\t<div class=\"elementor-element elementor-element-5083ea1a elementor-widget elementor-widget-jet-timeline\" data-id=\"5083ea1a\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"jet-timeline.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<div class=\"elementor-jet-timeline jet-elements\"><div class=\"jet-timeline jet-timeline--align-center jet-timeline--align-middle\">\n\t<div class=\"jet-timeline__line\"><div class=\"jet-timeline__line-progress\"><\/div><\/div>\n\t<div class=\"jet-timeline-list\"><div class=\"jet-timeline-item  elementor-repeater-item-5896881-0 jet-timeline-item--image-outside_after\">\n\t<div class=\"timeline-item__card\">\n\t\t<div class=\"timeline-item__card-inner\">\n\t\t\t\t<div class=\"timeline-item__card-img\"><img decoding=\"async\" width=\"786\" height=\"578\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/Shannon-Lords.jpg\" class=\"attachment-full size-full wp-image-11779\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/Shannon-Lords.jpg 786w, https:\/\/myotonic.org\/wp-content\/uploads\/Shannon-Lords-300x221.jpg 300w, https:\/\/myotonic.org\/wp-content\/uploads\/Shannon-Lords-768x565.jpg 768w\" sizes=\"(max-width: 786px) 100vw, 786px\" \/><\/div>\t\t\t\t<div class=\"timeline-item__card-content\">\n\t\t\t\t\t<div class=\"timeline-item__meta\"><\/div><h3 class=\"timeline-item__card-title\">2001 - 2005<br \/>Familles et scientifiques fa\u00e7onnent une vision commune<\/h3><div class=\"timeline-item__card-desc\"><p>\u00c0 partir de 2001, Shannon Lord, d\u00e9fenseure des patients, et le neurologue Tetsuo \u00ab Tee \u00bb Ashizawa, MD, ont aid\u00e9 \u00e0 relier l\u2019exp\u00e9rience des familles \u00e0 la communaut\u00e9 internationale de recherche sur la DM. Le Dr Ashizawa avait cofond\u00e9 l\u2019IDMC en 1997 ; Shannon a particip\u00e9 aux r\u00e9unions successives et, en 2005, a r\u00e9uni des familles en Am\u00e9rique du Nord autour de la n\u00e9cessit\u00e9 d\u2019une organisation d\u00e9di\u00e9e sp\u00e9cifiquement \u00e0 la DM. La MDF est n\u00e9e de cette vision communautaire et d\u2019un engagement pr\u00e9coce en faveur du partenariat avec les leaders scientifiques.  <\/p>\n<ul>\n<li><a href=\"https:\/\/myotonic.org\/team\/shannon-lord\/\">Rencontrez Shannon Lord<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/team\/tetsuo-ashizawa-md\/\">Rencontrez Tetsuo \u00ab Tee \u00bb Ashizawa, MD<\/a><\/li>\n<li><a href=\"https:\/\/idmc.org\/wp-content\/uploads\/2023\/05\/idmc-4_patient_booklet.pdf\" target=\"_blank\" rel=\"noopener\">Livret officiel du patient IDMC-4<\/a><\/li>\n<li><a href=\"https:\/\/idmc.org\/wp-content\/uploads\/2023\/05\/idmc-5_programbooklet.pdf\" target=\"_blank\" rel=\"noopener\">Programme officiel IDMC-5<\/a><\/li>\n<\/ul>\n<p>\u00a0<\/p><\/div>\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t<div class=\"timeline-item__card-arrow\"><\/div>\n\t<\/div>\n\t<div class=\"timeline-item__point\"><div class=\"timeline-item__point-content timeline-item__point-content--icon\"><span class=\"jet-elements-icon\"><i aria-hidden=\"true\" class=\"mdf-custom-icon my-custom-icon-mdfrecord-button\"><\/i><\/span><\/div><\/div><div class=\"timeline-item__meta\"><div class=\"timeline-item__card-img\"><img decoding=\"async\" width=\"786\" height=\"578\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/Shannon-Lords.jpg\" class=\"attachment-full size-full wp-image-11779\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/Shannon-Lords.jpg 786w, https:\/\/myotonic.org\/wp-content\/uploads\/Shannon-Lords-300x221.jpg 300w, https:\/\/myotonic.org\/wp-content\/uploads\/Shannon-Lords-768x565.jpg 768w\" sizes=\"(max-width: 786px) 100vw, 786px\" \/><\/div><\/div><\/div><div class=\"jet-timeline-item  elementor-repeater-item-5896881-1 jet-timeline-item--image-outside_after\">\n\t<div class=\"timeline-item__card\">\n\t\t<div class=\"timeline-item__card-inner\">\n\t\t\t\t<div class=\"timeline-item__card-img\"><img decoding=\"async\" width=\"1600\" height=\"1200\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Stanford-Lisa-Kayla-John.jpg\" class=\"attachment-full size-full wp-image-27292\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Stanford-Lisa-Kayla-John.jpg 1600w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Stanford-Lisa-Kayla-John-300x225.jpg 300w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Stanford-Lisa-Kayla-John-1024x768.jpg 1024w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Stanford-Lisa-Kayla-John-768x576.jpg 768w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Stanford-Lisa-Kayla-John-1536x1152.jpg 1536w\" sizes=\"(max-width: 1600px) 100vw, 1600px\" \/><\/div>\t\t\t\t<div class=\"timeline-item__card-content\">\n\t\t\t\t\t<div class=\"timeline-item__meta\"><\/div><h3 class=\"timeline-item__card-title\">2006 - 2008<br \/>Une fondation b\u00e2tie pour la DM<\/h3><div class=\"timeline-item__card-desc\"><p>Les organisateurs ont traduit cette vision en une organisation \u00e0 but non lucratif bas\u00e9e aux \u00c9tats-Unis et d\u00e9di\u00e9e exclusivement \u00e0 la DM. La MDF a \u00e9t\u00e9 officiellement constitu\u00e9e en tant qu\u2019organisation \u00e0 but non lucratif 501(c)(3) en Californie en 2007, avec un conseil d\u2019administration fondateur et un comit\u00e9 consultatif scientifique, des premiers groupes de soutien et le logo en forme de poign\u00e9e de main. En 2008, Lisa Harvey-Duren est devenue la premi\u00e8re directrice g\u00e9n\u00e9rale de la MDF, apportant le leadership et la structure op\u00e9rationnelle n\u00e9cessaires pour servir une communaut\u00e9 en pleine croissance.  <\/p>\n<ul>\n<li><a href=\"https:\/\/myotonic.org\/team\/lisa-harvey\/\">Rencontrez Lisa Harvey-Duren<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/team\/group\/medical-scientific-advisory-committee\/\">Comit\u00e9 consultatif m\u00e9dical et scientifique de la MDF<\/a><\/li>\n<\/ul><\/div>\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t<div class=\"timeline-item__card-arrow\"><\/div>\n\t<\/div>\n\t<div class=\"timeline-item__point\"><div class=\"timeline-item__point-content timeline-item__point-content--icon\"><span class=\"jet-elements-icon\"><i aria-hidden=\"true\" class=\"mdf-custom-icon my-custom-icon-mdfrecord-button\"><\/i><\/span><\/div><\/div><div class=\"timeline-item__meta\"><div class=\"timeline-item__card-img\"><img decoding=\"async\" width=\"1600\" height=\"1200\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Stanford-Lisa-Kayla-John.jpg\" class=\"attachment-full size-full wp-image-27292\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Stanford-Lisa-Kayla-John.jpg 1600w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Stanford-Lisa-Kayla-John-300x225.jpg 300w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Stanford-Lisa-Kayla-John-1024x768.jpg 1024w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Stanford-Lisa-Kayla-John-768x576.jpg 768w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Stanford-Lisa-Kayla-John-1536x1152.jpg 1536w\" sizes=\"(max-width: 1600px) 100vw, 1600px\" \/><\/div><\/div><\/div><div class=\"jet-timeline-item  elementor-repeater-item-5896881-2 jet-timeline-item--image-outside_after\">\n\t<div class=\"timeline-item__card\">\n\t\t<div class=\"timeline-item__card-inner\">\n\t\t\t\t<div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"1315\" height=\"832\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/MDF-Website-2010.png\" class=\"attachment-full size-full wp-image-27293\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/MDF-Website-2010.png 1315w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/MDF-Website-2010-300x190.png 300w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/MDF-Website-2010-1024x648.png 1024w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/MDF-Website-2010-768x486.png 768w\" sizes=\"(max-width: 1315px) 100vw, 1315px\" \/><\/div>\t\t\t\t<div class=\"timeline-item__card-content\">\n\t\t\t\t\t<div class=\"timeline-item__meta\"><\/div><h3 class=\"timeline-item__card-title\">2008<br \/>Cr\u00e9er un foyer en ligne de confiance pour la DM<\/h3><div class=\"timeline-item__card-desc\"><p>La MDF a lanc\u00e9 myotonic.org pour offrir aux personnes et aux familles un lieu de confiance et accueillant pour s\u2019informer sur la DM. \u00c0 une \u00e9poque o\u00f9 les recherches en ligne menaient souvent \u00e0 de la litt\u00e9rature technique et \u00e0 des images cliniques sans grand contexte pratique, le site a facilit\u00e9 l\u2019acc\u00e8s \u00e0 des informations compr\u00e9hensibles, au soutien et \u00e0 la communaut\u00e9. <\/p>\n<ul>\n<li><a href=\"https:\/\/myotonic.org\/support\/newly-diagnosed\/\">Nouvellement diagnostiqu\u00e9 avec la DM<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/resources\/\">Ressources de la MDF<\/a><\/li>\n<\/ul><\/div>\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t<div class=\"timeline-item__card-arrow\"><\/div>\n\t<\/div>\n\t<div class=\"timeline-item__point\"><div class=\"timeline-item__point-content timeline-item__point-content--icon\"><span class=\"jet-elements-icon\"><i aria-hidden=\"true\" class=\"mdf-custom-icon my-custom-icon-mdfrecord-button\"><\/i><\/span><\/div><\/div><div class=\"timeline-item__meta\"><div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"1315\" height=\"832\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/MDF-Website-2010.png\" class=\"attachment-full size-full wp-image-27293\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/MDF-Website-2010.png 1315w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/MDF-Website-2010-300x190.png 300w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/MDF-Website-2010-1024x648.png 1024w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/MDF-Website-2010-768x486.png 768w\" sizes=\"(max-width: 1315px) 100vw, 1315px\" \/><\/div><\/div><\/div><div class=\"jet-timeline-item  elementor-repeater-item-5896881-3 jet-timeline-item--image-outside_after\">\n\t<div class=\"timeline-item__card\">\n\t\t<div class=\"timeline-item__card-inner\">\n\t\t\t\t<div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"540\" height=\"360\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/IMG_8168.jpg\" class=\"attachment-full size-full wp-image-27294\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/IMG_8168.jpg 540w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/IMG_8168-300x200.jpg 300w\" sizes=\"(max-width: 540px) 100vw, 540px\" \/><\/div>\t\t\t\t<div class=\"timeline-item__card-content\">\n\t\t\t\t\t<div class=\"timeline-item__meta\"><\/div><h3 class=\"timeline-item__card-title\">2009<br \/>Soutenir les nouveaux chercheurs et rassembler les familles<\/h3><div class=\"timeline-item__card-desc\"><p>La MDF a lanc\u00e9 deux programmes qui allaient fa\u00e7onner son mod\u00e8le \u00e0 long terme : un programme de bourses de recherche pour attirer et retenir les scientifiques \u00e9mergents sp\u00e9cialis\u00e9s dans la DM, et la premi\u00e8re conf\u00e9rence des familles, o\u00f9 les familles, les cliniciens et les chercheurs pouvaient apprendre directement les uns des autres. Ensemble, ils ont associ\u00e9 l\u2019investissement dans l\u2019expertise \u00e0 un partenariat durable avec la communaut\u00e9. <\/p>\n<ul>\n<li><a href=\"https:\/\/myotonic.org\/research\/grants-and-funding\/\">Subventions de recherche et financement de la MDF<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/events\/conferences\/\">Archives des conf\u00e9rences de la MDF<\/a><\/li>\n<\/ul><\/div>\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t<div class=\"timeline-item__card-arrow\"><\/div>\n\t<\/div>\n\t<div class=\"timeline-item__point\"><div class=\"timeline-item__point-content timeline-item__point-content--icon\"><span class=\"jet-elements-icon\"><i aria-hidden=\"true\" class=\"mdf-custom-icon my-custom-icon-mdfrecord-button\"><\/i><\/span><\/div><\/div><div class=\"timeline-item__meta\"><div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"540\" height=\"360\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/IMG_8168.jpg\" class=\"attachment-full size-full wp-image-27294\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/IMG_8168.jpg 540w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/IMG_8168-300x200.jpg 300w\" sizes=\"(max-width: 540px) 100vw, 540px\" \/><\/div><\/div><\/div><div class=\"jet-timeline-item  elementor-repeater-item-5896881-4 jet-timeline-item--image-outside_after\">\n\t<div class=\"timeline-item__card\">\n\t\t<div class=\"timeline-item__card-inner\">\n\t\t\t\t<div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"800\" height=\"800\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/clinical-care-resources-thumb-2.jpg\" class=\"attachment-full size-full wp-image-18161\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/clinical-care-resources-thumb-2.jpg 800w, https:\/\/myotonic.org\/wp-content\/uploads\/clinical-care-resources-thumb-2-300x300.jpg 300w, https:\/\/myotonic.org\/wp-content\/uploads\/clinical-care-resources-thumb-2-150x150.jpg 150w, https:\/\/myotonic.org\/wp-content\/uploads\/clinical-care-resources-thumb-2-768x768.jpg 768w\" sizes=\"(max-width: 800px) 100vw, 800px\" \/><\/div>\t\t\t\t<div class=\"timeline-item__card-content\">\n\t\t\t\t\t<div class=\"timeline-item__meta\"><\/div><h3 class=\"timeline-item__card-title\">2009<br \/>Am\u00e9liorer la s\u00e9curit\u00e9 de l\u2019anesth\u00e9sie pour les personnes atteintes de DM<\/h3><div class=\"timeline-item__card-desc\"><p>La MDF a formalis\u00e9 et mis \u00e0 jour des conseils pratiques sur les risques graves li\u00e9s \u00e0 l\u2019anesth\u00e9sie associ\u00e9s \u00e0 la DM, aidant les personnes vivant avec la DM et les cliniciens \u00e0 se pr\u00e9parer plus sereinement aux interventions. Maintenues et enrichies en permanence, les ressources sur l\u2019anesth\u00e9sie sont devenues l\u2019une des contributions les plus importantes de la MDF aux soins et restent des outils essentiels pour les familles et les \u00e9quipes m\u00e9dicales. <\/p>\n<ul>\n<li><a href=\"https:\/\/myotonic.org\/resources\/anesthesia-guidelines\/\">Directives d\u2019anesth\u00e9sie de la MDF<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/resources\/anesthesia-advice-for-individuals-and-their-families\/\">Conseils d\u2019anesth\u00e9sie pour les individus et les familles<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/events\/conferences\/\">Conf\u00e9rences de la MDF<\/a><\/li>\n<\/ul><\/div>\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t<div class=\"timeline-item__card-arrow\"><\/div>\n\t<\/div>\n\t<div class=\"timeline-item__point\"><div class=\"timeline-item__point-content timeline-item__point-content--icon\"><span class=\"jet-elements-icon\"><i aria-hidden=\"true\" class=\"mdf-custom-icon my-custom-icon-mdfrecord-button\"><\/i><\/span><\/div><\/div><div class=\"timeline-item__meta\"><div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"800\" height=\"800\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/clinical-care-resources-thumb-2.jpg\" class=\"attachment-full size-full wp-image-18161\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/clinical-care-resources-thumb-2.jpg 800w, https:\/\/myotonic.org\/wp-content\/uploads\/clinical-care-resources-thumb-2-300x300.jpg 300w, https:\/\/myotonic.org\/wp-content\/uploads\/clinical-care-resources-thumb-2-150x150.jpg 150w, https:\/\/myotonic.org\/wp-content\/uploads\/clinical-care-resources-thumb-2-768x768.jpg 768w\" sizes=\"(max-width: 800px) 100vw, 800px\" \/><\/div><\/div><\/div><div class=\"jet-timeline-item  elementor-repeater-item-5896881-5 jet-timeline-item--image-outside_after\">\n\t<div class=\"timeline-item__card\">\n\t\t<div class=\"timeline-item__card-inner\">\n\t\t\t\t<div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"2560\" height=\"1707\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/PFDD-Question-on-Screen-for-Voting-scaled.jpg\" class=\"attachment-full size-full wp-image-27295\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/PFDD-Question-on-Screen-for-Voting-scaled.jpg 2560w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/PFDD-Question-on-Screen-for-Voting-scaled-300x200.jpg 300w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/PFDD-Question-on-Screen-for-Voting-scaled-1024x683.jpg 1024w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/PFDD-Question-on-Screen-for-Voting-scaled-768x512.jpg 768w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/PFDD-Question-on-Screen-for-Voting-scaled-1536x1024.jpg 1536w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/PFDD-Question-on-Screen-for-Voting-scaled-2048x1366.jpg 2048w\" sizes=\"(max-width: 2560px) 100vw, 2560px\" \/><\/div>\t\t\t\t<div class=\"timeline-item__card-content\">\n\t\t\t\t\t<div class=\"timeline-item__meta\"><\/div><h3 class=\"timeline-item__card-title\">2010 - 2012<br \/>La conf\u00e9rence de la MDF devient une tradition communautaire<\/h3><div class=\"timeline-item__card-desc\"><p>\u00c0 travers trois conf\u00e9rences des familles successives et un r\u00e9seau de groupes de soutien en expansion, la MDF a cr\u00e9\u00e9 des lieux fiables permettant aux personnes vivant avec la DM et \u00e0 leurs familles d\u2019apprendre aupr\u00e8s de sp\u00e9cialistes, de comparer leurs exp\u00e9riences pratiques et de structurer les \u00e9changes avec les cliniciens et les chercheurs. Ces ann\u00e9es ont \u00e9tabli la conf\u00e9rence comme le forum central de la MDF pour l\u2019apprentissage partag\u00e9 et le partenariat. <\/p>\n<ul>\n<li><a href=\"https:\/\/myotonic.org\/events\/conferences\/\">Archives des conf\u00e9rences de la MDF<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/events\/2011-mdf-annual-conference\/\">Conf\u00e9rence annuelle 2011 de la MDF<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/events\/2012-mdf-annual-conference\/\">Conf\u00e9rence annuelle 2012 de la MDF<\/a><\/li>\n<\/ul><\/div>\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t<div class=\"timeline-item__card-arrow\"><\/div>\n\t<\/div>\n\t<div class=\"timeline-item__point\"><div class=\"timeline-item__point-content timeline-item__point-content--icon\"><span class=\"jet-elements-icon\"><i aria-hidden=\"true\" class=\"mdf-custom-icon my-custom-icon-mdfrecord-button\"><\/i><\/span><\/div><\/div><div class=\"timeline-item__meta\"><div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"2560\" height=\"1707\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/PFDD-Question-on-Screen-for-Voting-scaled.jpg\" class=\"attachment-full size-full wp-image-27295\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/PFDD-Question-on-Screen-for-Voting-scaled.jpg 2560w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/PFDD-Question-on-Screen-for-Voting-scaled-300x200.jpg 300w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/PFDD-Question-on-Screen-for-Voting-scaled-1024x683.jpg 1024w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/PFDD-Question-on-Screen-for-Voting-scaled-768x512.jpg 768w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/PFDD-Question-on-Screen-for-Voting-scaled-1536x1024.jpg 1536w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/PFDD-Question-on-Screen-for-Voting-scaled-2048x1366.jpg 2048w\" sizes=\"(max-width: 2560px) 100vw, 2560px\" \/><\/div><\/div><\/div><div class=\"jet-timeline-item  elementor-repeater-item-5896881-6 jet-timeline-item--image-outside_after\">\n\t<div class=\"timeline-item__card\">\n\t\t<div class=\"timeline-item__card-inner\">\n\t\t\t\t<div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"1575\" height=\"1050\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/IMG_1225.jpg\" class=\"attachment-full size-full wp-image-27296\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/IMG_1225.jpg 1575w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/IMG_1225-300x200.jpg 300w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/IMG_1225-1024x683.jpg 1024w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/IMG_1225-768x512.jpg 768w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/IMG_1225-1536x1024.jpg 1536w\" sizes=\"(max-width: 1575px) 100vw, 1575px\" \/><\/div>\t\t\t\t<div class=\"timeline-item__card-content\">\n\t\t\t\t\t<div class=\"timeline-item__meta\"><\/div><h3 class=\"timeline-item__card-title\">2012<br \/>B\u00e2tir un r\u00e9seau formel de soutien par les pairs<\/h3><div class=\"timeline-item__card-desc\"><p>S\u2019appuyant sur les premiers groupes locaux form\u00e9s parall\u00e8lement \u00e0 la Fondation, la MDF a commenc\u00e9 \u00e0 d\u00e9velopper un r\u00e9seau de groupes de soutien plus formel, dirig\u00e9 par des facilitateurs. Le programme a cr\u00e9\u00e9 des espaces fiables pour les personnes vivant avec la DM, les membres de leur famille et les proches aidants afin de partager leurs exp\u00e9riences, des conseils pratiques et des liens, et s\u2019est \u00e9tendu \u00e0 plus de 20 groupes au cours des quatre ann\u00e9es suivantes. <\/p>\n<ul>\n<li><a href=\"https:\/\/myotonic.org\/support\/support-groups\/\">Groupes de soutien de la MDF<\/a><\/li>\n<\/ul><\/div>\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t<div class=\"timeline-item__card-arrow\"><\/div>\n\t<\/div>\n\t<div class=\"timeline-item__point\"><div class=\"timeline-item__point-content timeline-item__point-content--icon\"><span class=\"jet-elements-icon\"><i aria-hidden=\"true\" class=\"mdf-custom-icon my-custom-icon-mdfrecord-button\"><\/i><\/span><\/div><\/div><div class=\"timeline-item__meta\"><div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"1575\" height=\"1050\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/IMG_1225.jpg\" class=\"attachment-full size-full wp-image-27296\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/IMG_1225.jpg 1575w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/IMG_1225-300x200.jpg 300w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/IMG_1225-1024x683.jpg 1024w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/IMG_1225-768x512.jpg 768w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/IMG_1225-1536x1024.jpg 1536w\" sizes=\"(max-width: 1575px) 100vw, 1575px\" \/><\/div><\/div><\/div><div class=\"jet-timeline-item  elementor-repeater-item-5896881-7 jet-timeline-item--image-outside_after\">\n\t<div class=\"timeline-item__card\">\n\t\t<div class=\"timeline-item__card-inner\">\n\t\t\t\t<div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"700\" height=\"560\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/IMG_0729-e1788302417484.jpg\" class=\"attachment-full size-full wp-image-27297\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/IMG_0729-e1788302417484.jpg 700w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/IMG_0729-e1788302417484-300x240.jpg 300w\" sizes=\"(max-width: 700px) 100vw, 700px\" \/><\/div>\t\t\t\t<div class=\"timeline-item__card-content\">\n\t\t\t\t\t<div class=\"timeline-item__meta\"><\/div><h3 class=\"timeline-item__card-title\">2012<br \/>\u00c9tablir un soutien individuel<\/h3><div class=\"timeline-item__card-desc\"><p>D\u00e8s 2012, la MDF offrait un soutien individuel par le biais de ce qui est aujourd\u2019hui la Warmline, premi\u00e8re ann\u00e9e pour laquelle la MDF dispose de donn\u00e9es d\u2019utilisation enregistr\u00e9es. Ce canal direct aide les personnes vivant avec la DM et les familles \u00e0 s\u2019orienter dans leurs questions, \u00e0 trouver des ressources de confiance et \u00e0 obtenir du soutien lorsqu\u2019elles ont besoin d\u2019une personne comp\u00e9tente, et pas seulement d\u2019informations. <\/p>\n<ul>\n<li><a href=\"https:\/\/myotonic.org\/support\/request-warmline-support\/\">Demander un soutien Warmline<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/support\/how-we-can-help\/\">Comment la MDF peut vous aider<\/a><\/li>\n<\/ul><\/div>\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t<div class=\"timeline-item__card-arrow\"><\/div>\n\t<\/div>\n\t<div class=\"timeline-item__point\"><div class=\"timeline-item__point-content timeline-item__point-content--icon\"><span class=\"jet-elements-icon\"><i aria-hidden=\"true\" class=\"mdf-custom-icon my-custom-icon-mdfrecord-button\"><\/i><\/span><\/div><\/div><div class=\"timeline-item__meta\"><div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"700\" height=\"560\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/IMG_0729-e1788302417484.jpg\" class=\"attachment-full size-full wp-image-27297\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/IMG_0729-e1788302417484.jpg 700w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/IMG_0729-e1788302417484-300x240.jpg 300w\" sizes=\"(max-width: 700px) 100vw, 700px\" \/><\/div><\/div><\/div><div class=\"jet-timeline-item  elementor-repeater-item-5896881-8 jet-timeline-item--image-outside_after\">\n\t<div class=\"timeline-item__card\">\n\t\t<div class=\"timeline-item__card-inner\">\n\t\t\t\t<div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"1300\" height=\"867\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/family-registry-logo-history.png\" class=\"attachment-full size-full wp-image-26684\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/family-registry-logo-history.png 1300w, https:\/\/myotonic.org\/wp-content\/uploads\/family-registry-logo-history-300x200.png 300w, https:\/\/myotonic.org\/wp-content\/uploads\/family-registry-logo-history-1024x683.png 1024w, https:\/\/myotonic.org\/wp-content\/uploads\/family-registry-logo-history-768x512.png 768w\" sizes=\"(max-width: 1300px) 100vw, 1300px\" \/><\/div>\t\t\t\t<div class=\"timeline-item__card-content\">\n\t\t\t\t\t<div class=\"timeline-item__meta\"><\/div><h3 class=\"timeline-item__card-title\">2013<br \/>Pr\u00e9parer les chercheurs et les familles aux essais cliniques sur la DM<\/h3><div class=\"timeline-item__card-desc\"><p>La MDF a lanc\u00e9 le registre des familles atteintes de dystrophie myotonique (MDFR), a soutenu l\u2019expansion du r\u00e9seau de recherche clinique sur la dystrophie myotonique (DMCRN) et a profit\u00e9 de sa conf\u00e9rence, qui affichait complet, pour aider les familles \u00e0 comprendre le d\u00e9veloppement des m\u00e9dicaments et la participation aux essais. Ensemble, ces efforts ont commenc\u00e9 \u00e0 aligner les connaissances de la communaut\u00e9, les donn\u00e9es rapport\u00e9es par les patients, les sites de recherche et l\u2019industrie autour d\u2019un domaine mieux pr\u00e9par\u00e9 aux essais. <\/p>\n<ul>\n<li><a href=\"https:\/\/myotonic.org\/get-involved\/family-registry\/\">Rejoindre le registre des familles atteintes de dystrophie myotonique<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/research\/dmcrn\/\">R\u00e9seau de recherche clinique sur la dystrophie myotonique<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/myotonic-dystrophy-family-registry-study\/\">R\u00e9sultats de l\u2019\u00e9tude MDFR 2026<\/a><\/li>\n<\/ul><\/div>\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t<div class=\"timeline-item__card-arrow\"><\/div>\n\t<\/div>\n\t<div class=\"timeline-item__point\"><div class=\"timeline-item__point-content timeline-item__point-content--icon\"><span class=\"jet-elements-icon\"><i aria-hidden=\"true\" class=\"mdf-custom-icon my-custom-icon-mdfrecord-button\"><\/i><\/span><\/div><\/div><div class=\"timeline-item__meta\"><div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"1300\" height=\"867\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/family-registry-logo-history.png\" class=\"attachment-full size-full wp-image-26684\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/family-registry-logo-history.png 1300w, https:\/\/myotonic.org\/wp-content\/uploads\/family-registry-logo-history-300x200.png 300w, https:\/\/myotonic.org\/wp-content\/uploads\/family-registry-logo-history-1024x683.png 1024w, https:\/\/myotonic.org\/wp-content\/uploads\/family-registry-logo-history-768x512.png 768w\" sizes=\"(max-width: 1300px) 100vw, 1300px\" \/><\/div><\/div><\/div><div class=\"jet-timeline-item  elementor-repeater-item-5896881-9 jet-timeline-item--image-outside_after\">\n\t<div class=\"timeline-item__card\">\n\t\t<div class=\"timeline-item__card-inner\">\n\t\t\t\t<div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"1285\" height=\"887\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Digital-Academy-2012.png\" class=\"attachment-full size-full wp-image-27298\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Digital-Academy-2012.png 1285w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Digital-Academy-2012-300x207.png 300w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Digital-Academy-2012-1024x707.png 1024w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Digital-Academy-2012-768x530.png 768w\" sizes=\"(max-width: 1285px) 100vw, 1285px\" \/><\/div>\t\t\t\t<div class=\"timeline-item__card-content\">\n\t\t\t\t\t<div class=\"timeline-item__meta\"><\/div><h3 class=\"timeline-item__card-title\">2013<br \/>\u00c9tendre l\u2019\u00e9ducation de confiance au-del\u00e0 de la conf\u00e9rence<\/h3><div class=\"timeline-item__card-desc\"><p>Avec l\u2019ajout du premier webinaire de la MDF \u00e0 la nouvelle Acad\u00e9mie num\u00e9rique en 2013, l\u2019\u00e9ducation de confiance sur la DM a commenc\u00e9 \u00e0 d\u00e9passer le cadre d\u2019un rassemblement annuel unique. La biblioth\u00e8que \u00e0 la demande a jet\u00e9 les bases d\u2019un acc\u00e8s permanent \u00e0 l\u2019expertise des cliniciens, des chercheurs et de la communaut\u00e9, et s\u2019est ensuite enrichie de centaines d\u2019heures de programmes pratiques et scientifiques. <\/p>\n<ul>\n<li><a href=\"https:\/\/myotonic.org\/digital-academy\/\">Acad\u00e9mie num\u00e9rique de la MDF<\/a><\/li>\n<\/ul><\/div>\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t<div class=\"timeline-item__card-arrow\"><\/div>\n\t<\/div>\n\t<div class=\"timeline-item__point\"><div class=\"timeline-item__point-content timeline-item__point-content--icon\"><span class=\"jet-elements-icon\"><i aria-hidden=\"true\" class=\"mdf-custom-icon my-custom-icon-mdfrecord-button\"><\/i><\/span><\/div><\/div><div class=\"timeline-item__meta\"><div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"1285\" height=\"887\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Digital-Academy-2012.png\" class=\"attachment-full size-full wp-image-27298\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Digital-Academy-2012.png 1285w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Digital-Academy-2012-300x207.png 300w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Digital-Academy-2012-1024x707.png 1024w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Digital-Academy-2012-768x530.png 768w\" sizes=\"(max-width: 1285px) 100vw, 1285px\" \/><\/div><\/div><\/div><div class=\"jet-timeline-item  elementor-repeater-item-5896881-10 jet-timeline-item--image-outside_after\">\n\t<div class=\"timeline-item__card\">\n\t\t<div class=\"timeline-item__card-inner\">\n\t\t\t\t<div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"1136\" height=\"756\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Congressional-Hearing-Lisa-Kayla.jpg\" class=\"attachment-full size-full wp-image-27299\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Congressional-Hearing-Lisa-Kayla.jpg 1136w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Congressional-Hearing-Lisa-Kayla-300x200.jpg 300w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Congressional-Hearing-Lisa-Kayla-1024x681.jpg 1024w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Congressional-Hearing-Lisa-Kayla-768x511.jpg 768w\" sizes=\"(max-width: 1136px) 100vw, 1136px\" \/><\/div>\t\t\t\t<div class=\"timeline-item__card-content\">\n\t\t\t\t\t<div class=\"timeline-item__meta\"><\/div><h3 class=\"timeline-item__card-title\">2014<br \/>La communaut\u00e9 de la DM s\u2019exprime devant le Congr\u00e8s<\/h3><div class=\"timeline-item__card-desc\"><p>En 2014, Kayla Vittek, qui vivait avec une DM cong\u00e9nitale, et sa m\u00e8re, Lisa Harvey-Duren, directrice g\u00e9n\u00e9rale fondatrice de la MDF, ont t\u00e9moign\u00e9 devant le comit\u00e9 de la sant\u00e9, de l\u2019\u00e9ducation, du travail et des pensions du S\u00e9nat am\u00e9ricain en faveur de la reconduction de la loi MD-CARE. Cette ann\u00e9e-l\u00e0, la MDF a \u00e9galement men\u00e9 son premier effort de plaidoyer au Capitole, \u00e9tablissant un programme durable gr\u00e2ce auquel les familles pouvaient influencer le financement de la recherche et les politiques publiques. <\/p>\n<ul>\n<li><a href=\"https:\/\/myotonic.org\/team\/lisa-harvey\/\">Rencontrez Lisa Harvey-Duren et d\u00e9couvrez l\u2019histoire de Kayla<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/events\/2014-mdf-annual-conference-in-washington-dc\/\">Conf\u00e9rence annuelle 2014 de la MDF \u00e0 Washington, D.C.<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/get-involved\/advocate\/\">Plaidoyer de la MDF<\/a><\/li>\n<\/ul><\/div>\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t<div class=\"timeline-item__card-arrow\"><\/div>\n\t<\/div>\n\t<div class=\"timeline-item__point\"><div class=\"timeline-item__point-content timeline-item__point-content--icon\"><span class=\"jet-elements-icon\"><i aria-hidden=\"true\" class=\"mdf-custom-icon my-custom-icon-mdfrecord-button\"><\/i><\/span><\/div><\/div><div class=\"timeline-item__meta\"><div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"1136\" height=\"756\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Congressional-Hearing-Lisa-Kayla.jpg\" class=\"attachment-full size-full wp-image-27299\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Congressional-Hearing-Lisa-Kayla.jpg 1136w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Congressional-Hearing-Lisa-Kayla-300x200.jpg 300w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Congressional-Hearing-Lisa-Kayla-1024x681.jpg 1024w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Congressional-Hearing-Lisa-Kayla-768x511.jpg 768w\" sizes=\"(max-width: 1136px) 100vw, 1136px\" \/><\/div><\/div><\/div><div class=\"jet-timeline-item  elementor-repeater-item-5896881-11 jet-timeline-item--image-outside_after\">\n\t<div class=\"timeline-item__card\">\n\t\t<div class=\"timeline-item__card-inner\">\n\t\t\t\t<div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"1000\" height=\"667\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/drug-development-img.jpg\" class=\"attachment-full size-full wp-image-21037\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/drug-development-img.jpg 1000w, https:\/\/myotonic.org\/wp-content\/uploads\/drug-development-img-300x200.jpg 300w, https:\/\/myotonic.org\/wp-content\/uploads\/drug-development-img-768x512.jpg 768w\" sizes=\"(max-width: 1000px) 100vw, 1000px\" \/><\/div>\t\t\t\t<div class=\"timeline-item__card-content\">\n\t\t\t\t\t<div class=\"timeline-item__meta\"><\/div><h3 class=\"timeline-item__card-title\">2014<br \/>Le premier essai de DM modificateur de la maladie<\/h3><div class=\"timeline-item__card-desc\"><p>Une \u00e9tude de phase 1-2 sur l\u2019IONIS-DMPKRx-2.5 a d\u00e9but\u00e9 sur plusieurs sites aux \u00c9tats-Unis, marquant le premier essai clinique con\u00e7u pour cibler le processus pathologique sous-jacent de la DM1. La th\u00e9rapie n\u2019a pas atteint des niveaux suffisants dans le muscle squelettique, mais l\u2019\u00e9tude a d\u00e9montr\u00e9 qu\u2019un essai multicentrique modificateur de la maladie pour la DM pouvait \u00eatre men\u00e9 et ses enseignements ont \u00e9clair\u00e9 les approches ult\u00e9rieures. <\/p>\n<ul>\n<li><a href=\"https:\/\/myotonic.org\/research\/clinical-trials-and-studies\/\">Essais cliniques et \u00e9tudes<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/resources\/drug-development-pipeline\/\">Pipeline de d\u00e9veloppement de m\u00e9dicaments de la MDF<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/events\/2014-mdf-annual-conference-in-washington-dc\/\">Conf\u00e9rence annuelle 2014 de la MDF<\/a><\/li>\n<\/ul><\/div>\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t<div class=\"timeline-item__card-arrow\"><\/div>\n\t<\/div>\n\t<div class=\"timeline-item__point\"><div class=\"timeline-item__point-content timeline-item__point-content--icon\"><span class=\"jet-elements-icon\"><i aria-hidden=\"true\" class=\"mdf-custom-icon my-custom-icon-mdfrecord-button\"><\/i><\/span><\/div><\/div><div class=\"timeline-item__meta\"><div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"1000\" height=\"667\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/drug-development-img.jpg\" class=\"attachment-full size-full wp-image-21037\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/drug-development-img.jpg 1000w, https:\/\/myotonic.org\/wp-content\/uploads\/drug-development-img-300x200.jpg 300w, https:\/\/myotonic.org\/wp-content\/uploads\/drug-development-img-768x512.jpg 768w\" sizes=\"(max-width: 1000px) 100vw, 1000px\" \/><\/div><\/div><\/div><div class=\"jet-timeline-item  elementor-repeater-item-5896881-12 jet-timeline-item--image-outside_after\">\n\t<div class=\"timeline-item__card\">\n\t\t<div class=\"timeline-item__card-inner\">\n\t\t\t\t<div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"2560\" height=\"1707\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/JK-podium-scaled.jpg\" class=\"attachment-full size-full wp-image-27300\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/JK-podium-scaled.jpg 2560w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/JK-podium-scaled-300x200.jpg 300w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/JK-podium-scaled-1024x683.jpg 1024w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/JK-podium-scaled-768x512.jpg 768w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/JK-podium-scaled-1536x1024.jpg 1536w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/JK-podium-scaled-2048x1366.jpg 2048w\" sizes=\"(max-width: 2560px) 100vw, 2560px\" \/><\/div>\t\t\t\t<div class=\"timeline-item__card-content\">\n\t\t\t\t\t<div class=\"timeline-item__meta\"><\/div><h3 class=\"timeline-item__card-title\">2015<br \/>Un plan coordonn\u00e9 pour les soins et les traitements<\/h3><div class=\"timeline-item__card-desc\"><p>La MDF s\u2019est engag\u00e9e dans un programme pluriannuel de plusieurs millions de dollars (surnomm\u00e9 Myotonic 3.0) pour lever les obstacles freinant les soins et le d\u00e9veloppement de th\u00e9rapies. La MDF a renforc\u00e9 les capacit\u00e9s de recherche clinique, fait progresser les travaux sur les biomarqueurs et les crit\u00e8res d\u2019\u00e9valuation, mobilis\u00e9 les r\u00e9gulateurs et l\u2019industrie, et commenc\u00e9 \u00e0 \u00e9laborer des recommandations de soins consensuelles. Un atelier historique a r\u00e9uni des repr\u00e9sentants de la communaut\u00e9, des chercheurs, le NIH, la FDA et l\u2019industrie autour d\u2019un agenda de d\u00e9veloppement commun.  <\/p>\n<ul>\n<li><a href=\"https:\/\/myotonic.org\/mdf-3-0-advancing-myotonic-dystrophy-research-care-and-drug-development\/\">R\u00e9sum\u00e9 de MDF 3.0<\/a><\/li>\n<li><a href=\"https:\/\/doi.org\/10.1177\/2168479016683988\" target=\"_blank\" rel=\"noopener\">Rapport de l\u2019atelier sur le d\u00e9veloppement de th\u00e9rapies centr\u00e9es sur le patient<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/events\/2015-mdf-annual-conference-in-washington-dc\/\">Conf\u00e9rence annuelle 2015 de la MDF<\/a><\/li>\n<\/ul><\/div>\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t<div class=\"timeline-item__card-arrow\"><\/div>\n\t<\/div>\n\t<div class=\"timeline-item__point\"><div class=\"timeline-item__point-content timeline-item__point-content--icon\"><span class=\"jet-elements-icon\"><i aria-hidden=\"true\" class=\"mdf-custom-icon my-custom-icon-mdfrecord-button\"><\/i><\/span><\/div><\/div><div class=\"timeline-item__meta\"><div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"2560\" height=\"1707\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/JK-podium-scaled.jpg\" class=\"attachment-full size-full wp-image-27300\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/JK-podium-scaled.jpg 2560w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/JK-podium-scaled-300x200.jpg 300w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/JK-podium-scaled-1024x683.jpg 1024w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/JK-podium-scaled-768x512.jpg 768w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/JK-podium-scaled-1536x1024.jpg 1536w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/JK-podium-scaled-2048x1366.jpg 2048w\" sizes=\"(max-width: 2560px) 100vw, 2560px\" \/><\/div><\/div><\/div><div class=\"jet-timeline-item  elementor-repeater-item-5896881-13 jet-timeline-item--image-outside_after\">\n\t<div class=\"timeline-item__card\">\n\t\t<div class=\"timeline-item__card-inner\">\n\t\t\t\t<div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"1797\" height=\"488\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Wyck-Foundation.jpg\" class=\"attachment-full size-full wp-image-27301\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Wyck-Foundation.jpg 1797w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Wyck-Foundation-300x81.jpg 300w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Wyck-Foundation-1024x278.jpg 1024w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Wyck-Foundation-768x209.jpg 768w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Wyck-Foundation-1536x417.jpg 1536w\" sizes=\"(max-width: 1797px) 100vw, 1797px\" \/><\/div>\t\t\t\t<div class=\"timeline-item__card-content\">\n\t\t\t\t\t<div class=\"timeline-item__meta\"><\/div><h3 class=\"timeline-item__card-title\">2015<br \/>Un nouveau partenariat de recherche au Royaume-Uni<\/h3><div class=\"timeline-item__card-desc\"><p>L\u2019organisation s\u0153ur de la MDF a \u00e9t\u00e9 \u00e9tablie \u00e0 Londres sous le nom de Wyck Foundation, devenue plus tard MDF UK, cr\u00e9ant une source compl\u00e9mentaire d\u2019investissement dans la science de la DM. En neuf ans, MDF UK a financ\u00e9 16 subventions de recherche et 22 bourses, souvent en partenariat avec la MDF, \u00e9tendant le soutien des donateurs aux chercheurs et aux projets dans tout le domaine international. <\/p>\n<ul>\n<li><a href=\"https:\/\/myotonic.org\/history\/mdf-uk\/\">H\u00e9ritage de recherche de MDF UK<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/research\/grants-and-funding\/\">Subventions de recherche et financement de la MDF<\/a><\/li>\n<\/ul><\/div>\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t<div class=\"timeline-item__card-arrow\"><\/div>\n\t<\/div>\n\t<div class=\"timeline-item__point\"><div class=\"timeline-item__point-content timeline-item__point-content--icon\"><span class=\"jet-elements-icon\"><i aria-hidden=\"true\" class=\"mdf-custom-icon my-custom-icon-mdfrecord-button\"><\/i><\/span><\/div><\/div><div class=\"timeline-item__meta\"><div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"1797\" height=\"488\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Wyck-Foundation.jpg\" class=\"attachment-full size-full wp-image-27301\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Wyck-Foundation.jpg 1797w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Wyck-Foundation-300x81.jpg 300w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Wyck-Foundation-1024x278.jpg 1024w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Wyck-Foundation-768x209.jpg 768w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Wyck-Foundation-1536x417.jpg 1536w\" sizes=\"(max-width: 1797px) 100vw, 1797px\" \/><\/div><\/div><\/div><div class=\"jet-timeline-item  elementor-repeater-item-5896881-14 jet-timeline-item--image-outside_after\">\n\t<div class=\"timeline-item__card\">\n\t\t<div class=\"timeline-item__card-inner\">\n\t\t\t\t<div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"2560\" height=\"1707\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/PFDD-Lee-Baker-and-Judy-Marks-Lee-Speaking-scaled.jpg\" class=\"attachment-full size-full wp-image-27302\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/PFDD-Lee-Baker-and-Judy-Marks-Lee-Speaking-scaled.jpg 2560w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/PFDD-Lee-Baker-and-Judy-Marks-Lee-Speaking-scaled-300x200.jpg 300w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/PFDD-Lee-Baker-and-Judy-Marks-Lee-Speaking-scaled-1024x683.jpg 1024w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/PFDD-Lee-Baker-and-Judy-Marks-Lee-Speaking-scaled-768x512.jpg 768w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/PFDD-Lee-Baker-and-Judy-Marks-Lee-Speaking-scaled-1536x1024.jpg 1536w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/PFDD-Lee-Baker-and-Judy-Marks-Lee-Speaking-scaled-2048x1366.jpg 2048w\" sizes=\"(max-width: 2560px) 100vw, 2560px\" \/><\/div>\t\t\t\t<div class=\"timeline-item__card-content\">\n\t\t\t\t\t<div class=\"timeline-item__meta\"><\/div><h3 class=\"timeline-item__card-title\">2016<br \/>La communaut\u00e9 d\u00e9finit un traitement significatif<\/h3><div class=\"timeline-item__card-desc\"><p>La MDF a organis\u00e9 la toute premi\u00e8re r\u00e9union de d\u00e9veloppement de m\u00e9dicaments centr\u00e9e sur le patient et dirig\u00e9e par l\u2019ext\u00e9rieur, approuv\u00e9e par la FDA pour la DM, donnant aux personnes vivant avec la DM et aux proches aidants un r\u00f4le formel dans la d\u00e9finition des priorit\u00e9s de traitement, du risque acceptable et du b\u00e9n\u00e9fice significatif. Le rapport \u00ab Voice of the Patient \u00bb qui en a r\u00e9sult\u00e9 a cr\u00e9\u00e9 un registre durable pour les r\u00e9gulateurs, les chercheurs et les d\u00e9veloppeurs de m\u00e9dicaments. <\/p>\n<ul>\n<li><a href=\"https:\/\/myotonic.org\/wp-content\/uploads\/MDFVoicePatientReportMay2017.pdf\">Rapport \u00ab Voice of the Patient \u00bb de la MDF<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/events\/2016-mdf-annual-conference-in-washington-dc\/\">Conf\u00e9rence annuelle 2016 de la MDF<\/a><\/li>\n<\/ul>\n<p>\u00a0<\/p><\/div>\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t<div class=\"timeline-item__card-arrow\"><\/div>\n\t<\/div>\n\t<div class=\"timeline-item__point\"><div class=\"timeline-item__point-content timeline-item__point-content--icon\"><span class=\"jet-elements-icon\"><i aria-hidden=\"true\" class=\"mdf-custom-icon my-custom-icon-mdfrecord-button\"><\/i><\/span><\/div><\/div><div class=\"timeline-item__meta\"><div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"2560\" height=\"1707\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/PFDD-Lee-Baker-and-Judy-Marks-Lee-Speaking-scaled.jpg\" class=\"attachment-full size-full wp-image-27302\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/PFDD-Lee-Baker-and-Judy-Marks-Lee-Speaking-scaled.jpg 2560w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/PFDD-Lee-Baker-and-Judy-Marks-Lee-Speaking-scaled-300x200.jpg 300w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/PFDD-Lee-Baker-and-Judy-Marks-Lee-Speaking-scaled-1024x683.jpg 1024w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/PFDD-Lee-Baker-and-Judy-Marks-Lee-Speaking-scaled-768x512.jpg 768w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/PFDD-Lee-Baker-and-Judy-Marks-Lee-Speaking-scaled-1536x1024.jpg 1536w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/PFDD-Lee-Baker-and-Judy-Marks-Lee-Speaking-scaled-2048x1366.jpg 2048w\" sizes=\"(max-width: 2560px) 100vw, 2560px\" \/><\/div><\/div><\/div><div class=\"jet-timeline-item  elementor-repeater-item-5896881-15 jet-timeline-item--image-outside_after\">\n\t<div class=\"timeline-item__card\">\n\t\t<div class=\"timeline-item__card-inner\">\n\t\t\t\t<div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"2560\" height=\"1707\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Laura-Gershenson-2017-scaled.jpg\" class=\"attachment-full size-full wp-image-27303\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Laura-Gershenson-2017-scaled.jpg 2560w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Laura-Gershenson-2017-scaled-300x200.jpg 300w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Laura-Gershenson-2017-scaled-1024x683.jpg 1024w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Laura-Gershenson-2017-scaled-768x512.jpg 768w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Laura-Gershenson-2017-scaled-1536x1024.jpg 1536w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Laura-Gershenson-2017-scaled-2048x1366.jpg 2048w\" sizes=\"(max-width: 2560px) 100vw, 2560px\" \/><\/div>\t\t\t\t<div class=\"timeline-item__card-content\">\n\t\t\t\t\t<div class=\"timeline-item__meta\"><\/div><h3 class=\"timeline-item__card-title\">2017<br \/>Transformer les besoins de la communaut\u00e9 en soutien \u00e0 l\u2019invalidit\u00e9<\/h3><div class=\"timeline-item__card-desc\"><p>Les conversations sur la Warmline et d\u2019autres retours de la communaut\u00e9 ont montr\u00e9 que les familles avaient du mal \u00e0 s\u2019orienter dans les demandes d\u2019invalidit\u00e9. La MDF a r\u00e9pondu par une trousse \u00e0 outils pratique pour la s\u00e9curit\u00e9 sociale et un engagement soutenu aupr\u00e8s de l\u2019administration de la s\u00e9curit\u00e9 sociale, aidant \u00e0 garantir l\u2019ajout de la DM cong\u00e9nitale au programme \u00ab Compassionate Allowances \u00bb et des d\u00e9cisions plus rapides pour les familles \u00e9ligibles. <\/p>\n<ul>\n<li><a href=\"https:\/\/myotonic.org\/resources\/applying-for-social-security-disability-benefits-toolkit\/\">Trousse \u00e0 outils pour la demande de prestations d\u2019invalidit\u00e9 de la s\u00e9curit\u00e9 sociale<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/digital-academy\/understanding-ssa-compassionate-allowance-cdm\/\">Comprendre le programme \u00ab Compassionate Allowance \u00bb de la SSA pour la DM cong\u00e9nitale<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/events\/2017-mdf-annual-conference-in-san-francisco-ca\/\">Conf\u00e9rence annuelle 2017 de la MDF<\/a><\/li>\n<\/ul><\/div>\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t<div class=\"timeline-item__card-arrow\"><\/div>\n\t<\/div>\n\t<div class=\"timeline-item__point\"><div class=\"timeline-item__point-content timeline-item__point-content--icon\"><span class=\"jet-elements-icon\"><i aria-hidden=\"true\" class=\"mdf-custom-icon my-custom-icon-mdfrecord-button\"><\/i><\/span><\/div><\/div><div class=\"timeline-item__meta\"><div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"2560\" height=\"1707\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Laura-Gershenson-2017-scaled.jpg\" class=\"attachment-full size-full wp-image-27303\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Laura-Gershenson-2017-scaled.jpg 2560w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Laura-Gershenson-2017-scaled-300x200.jpg 300w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Laura-Gershenson-2017-scaled-1024x683.jpg 1024w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Laura-Gershenson-2017-scaled-768x512.jpg 768w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Laura-Gershenson-2017-scaled-1536x1024.jpg 1536w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Laura-Gershenson-2017-scaled-2048x1366.jpg 2048w\" sizes=\"(max-width: 2560px) 100vw, 2560px\" \/><\/div><\/div><\/div><div class=\"jet-timeline-item  elementor-repeater-item-5896881-16 jet-timeline-item--image-outside_after\">\n\t<div class=\"timeline-item__card\">\n\t\t<div class=\"timeline-item__card-inner\">\n\t\t\t\t<div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"1200\" height=\"900\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/1_Haylon.jpg\" class=\"attachment-full size-full wp-image-18880\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/1_Haylon.jpg 1200w, https:\/\/myotonic.org\/wp-content\/uploads\/1_Haylon-300x225.jpg 300w, https:\/\/myotonic.org\/wp-content\/uploads\/1_Haylon-1024x768.jpg 1024w, https:\/\/myotonic.org\/wp-content\/uploads\/1_Haylon-768x576.jpg 768w\" sizes=\"(max-width: 1200px) 100vw, 1200px\" \/><\/div>\t\t\t\t<div class=\"timeline-item__card-content\">\n\t\t\t\t\t<div class=\"timeline-item__meta\"><\/div><h3 class=\"timeline-item__card-title\">2018<br \/>Le financement f\u00e9d\u00e9ral de la recherche s\u2019ouvre \u00e0 la DM<\/h3><div class=\"timeline-item__card-desc\"><p>Apr\u00e8s des ann\u00e9es de plaidoyer par la MDF et la communaut\u00e9 de la DM, la dystrophie myotonique est devenue \u00e9ligible au programme de recherche m\u00e9dicale \u00e9valu\u00e9 par les pairs (PRMRP) du d\u00e9partement de la D\u00e9fense des \u00c9tats-Unis. Cette \u00e9ligibilit\u00e9 a ouvert des financements f\u00e9d\u00e9raux comp\u00e9titifs aux chercheurs sur la DM et a \u00e9tabli une voie que la MDF et les d\u00e9fenseurs de la communaut\u00e9 ont prot\u00e9g\u00e9e avec succ\u00e8s ann\u00e9e apr\u00e8s ann\u00e9e. <\/p>\n<ul>\n<li><a href=\"https:\/\/myotonic.org\/get-involved\/advocate\/\">Plaidoyer de la MDF<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/get-involved\/advocate\/prmrp\/\">Historique de l\u2019\u00e9ligibilit\u00e9 au PRMRP<\/a><\/li>\n<\/ul><\/div>\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t<div class=\"timeline-item__card-arrow\"><\/div>\n\t<\/div>\n\t<div class=\"timeline-item__point\"><div class=\"timeline-item__point-content timeline-item__point-content--icon\"><span class=\"jet-elements-icon\"><i aria-hidden=\"true\" class=\"mdf-custom-icon my-custom-icon-mdfrecord-button\"><\/i><\/span><\/div><\/div><div class=\"timeline-item__meta\"><div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"1200\" height=\"900\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/1_Haylon.jpg\" class=\"attachment-full size-full wp-image-18880\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/1_Haylon.jpg 1200w, https:\/\/myotonic.org\/wp-content\/uploads\/1_Haylon-300x225.jpg 300w, https:\/\/myotonic.org\/wp-content\/uploads\/1_Haylon-1024x768.jpg 1024w, https:\/\/myotonic.org\/wp-content\/uploads\/1_Haylon-768x576.jpg 768w\" sizes=\"(max-width: 1200px) 100vw, 1200px\" \/><\/div><\/div><\/div><div class=\"jet-timeline-item  elementor-repeater-item-5896881-17 jet-timeline-item--image-outside_after\">\n\t<div class=\"timeline-item__card\">\n\t\t<div class=\"timeline-item__card-inner\">\n\t\t\t\t<div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"960\" height=\"540\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Care-Considerations-Group-2016.jpg\" class=\"attachment-full size-full wp-image-27304\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Care-Considerations-Group-2016.jpg 960w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Care-Considerations-Group-2016-300x169.jpg 300w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Care-Considerations-Group-2016-768x432.jpg 768w\" sizes=\"(max-width: 960px) 100vw, 960px\" \/><\/div>\t\t\t\t<div class=\"timeline-item__card-content\">\n\t\t\t\t\t<div class=\"timeline-item__meta\"><\/div><h3 class=\"timeline-item__card-title\">2018<br \/>Les premi\u00e8res recommandations de soins consensuelles pour la DM1<\/h3><div class=\"timeline-item__card-desc\"><p>La MDF a r\u00e9uni des experts internationaux pour rem\u00e9dier au manque de directives cliniques coh\u00e9rentes pour cette maladie complexe et multisyst\u00e9mique. Les recommandations consensuelles qui en ont r\u00e9sult\u00e9 pour les adultes atteints de DM1 ont offert aux cliniciens et aux familles un cadre commun, fond\u00e9 sur des donn\u00e9es probantes, pour la gestion des soins \u00e0 travers plusieurs syst\u00e8mes corporels et ont jet\u00e9 les bases de directives couvrant d\u2019autres populations atteintes de DM. <\/p>\n<ul>\n<li><a href=\"https:\/\/myotonic.org\/resources\/\">Toutes les ressources de la MDF<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/resources\/cat\/healthcare-professionals\/\">Ressources pour les professionnels de la sant\u00e9<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/resources\/clinical-care-recommendations-for-adults-with-dm1\/\">Recommandations de soins cliniques pour les adultes atteints de DM1<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/resources\/clinical-care-recommendations-for-adults-with-myotonic-dystrophy-type-2\/\">Recommandations de soins cliniques pour les adultes atteints de DM2<\/a><\/li>\n<\/ul><\/div>\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t<div class=\"timeline-item__card-arrow\"><\/div>\n\t<\/div>\n\t<div class=\"timeline-item__point\"><div class=\"timeline-item__point-content timeline-item__point-content--icon\"><span class=\"jet-elements-icon\"><i aria-hidden=\"true\" class=\"mdf-custom-icon my-custom-icon-mdfrecord-button\"><\/i><\/span><\/div><\/div><div class=\"timeline-item__meta\"><div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"960\" height=\"540\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Care-Considerations-Group-2016.jpg\" class=\"attachment-full size-full wp-image-27304\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Care-Considerations-Group-2016.jpg 960w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Care-Considerations-Group-2016-300x169.jpg 300w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Care-Considerations-Group-2016-768x432.jpg 768w\" sizes=\"(max-width: 960px) 100vw, 960px\" \/><\/div><\/div><\/div><div class=\"jet-timeline-item  elementor-repeater-item-5896881-18 jet-timeline-item--image-outside_after\">\n\t<div class=\"timeline-item__card\">\n\t\t<div class=\"timeline-item__card-inner\">\n\t\t\t\t<div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"1218\" height=\"1256\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Vertical-Gene-Editing-Wkshp-Photo.png\" class=\"attachment-full size-full wp-image-27305\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Vertical-Gene-Editing-Wkshp-Photo.png 1218w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Vertical-Gene-Editing-Wkshp-Photo-291x300.png 291w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Vertical-Gene-Editing-Wkshp-Photo-993x1024.png 993w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Vertical-Gene-Editing-Wkshp-Photo-768x792.png 768w\" sizes=\"(max-width: 1218px) 100vw, 1218px\" \/><\/div>\t\t\t\t<div class=\"timeline-item__card-content\">\n\t\t\t\t\t<div class=\"timeline-item__meta\"><\/div><h3 class=\"timeline-item__card-title\">2018<br \/>D\u00e9finir les priorit\u00e9s pour la recherche sur l\u2019\u00e9dition du g\u00e9nome<\/h3><div class=\"timeline-item__card-desc\"><p>La MDF a r\u00e9uni des experts du monde universitaire, du NIH, de la FDA, de l\u2019industrie et de la communaut\u00e9 pour \u00e9valuer comment l\u2019\u00e9dition du g\u00e9nome pourrait \u00eatre avanc\u00e9e de mani\u00e8re responsable pour la DM1. L\u2019atelier a d\u00e9fini des questions scientifiques, de d\u00e9livrance, de s\u00e9curit\u00e9 et de d\u00e9veloppement, et a \u00e9clair\u00e9 une initiative de financement comp\u00e9titive pour la recherche \u00e0 un stade pr\u00e9coce ciblant DMPK. <\/p>\n<ul>\n<li><a href=\"https:\/\/myotonic.org\/wp-content\/uploads\/MDF_Genome_Editing_Workshop_Full_Notes_FNL_2018-04-27.pdf\">Rapport de l\u2019atelier sur l\u2019\u00e9dition du g\u00e9nome de la MDF<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/research\/\">Recherche de la MDF<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/events\/2018-mdf-annual-conference-in-nashville-tn\/\">Conf\u00e9rence annuelle 2018 de la MDF<\/a><\/li>\n<\/ul><\/div>\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t<div class=\"timeline-item__card-arrow\"><\/div>\n\t<\/div>\n\t<div class=\"timeline-item__point\"><div class=\"timeline-item__point-content timeline-item__point-content--icon\"><span class=\"jet-elements-icon\"><i aria-hidden=\"true\" class=\"mdf-custom-icon my-custom-icon-mdfrecord-button\"><\/i><\/span><\/div><\/div><div class=\"timeline-item__meta\"><div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"1218\" height=\"1256\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Vertical-Gene-Editing-Wkshp-Photo.png\" class=\"attachment-full size-full wp-image-27305\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Vertical-Gene-Editing-Wkshp-Photo.png 1218w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Vertical-Gene-Editing-Wkshp-Photo-291x300.png 291w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Vertical-Gene-Editing-Wkshp-Photo-993x1024.png 993w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Vertical-Gene-Editing-Wkshp-Photo-768x792.png 768w\" sizes=\"(max-width: 1218px) 100vw, 1218px\" \/><\/div><\/div><\/div><div class=\"jet-timeline-item  elementor-repeater-item-5896881-19 jet-timeline-item--image-outside_after\">\n\t<div class=\"timeline-item__card\">\n\t\t<div class=\"timeline-item__card-inner\">\n\t\t\t\t<div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"2560\" height=\"1707\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Ellis-Oppenheim-and-woman-at-vendor-fair-table-scaled.jpg\" class=\"attachment-full size-full wp-image-27306\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Ellis-Oppenheim-and-woman-at-vendor-fair-table-scaled.jpg 2560w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Ellis-Oppenheim-and-woman-at-vendor-fair-table-scaled-300x200.jpg 300w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Ellis-Oppenheim-and-woman-at-vendor-fair-table-scaled-1024x683.jpg 1024w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Ellis-Oppenheim-and-woman-at-vendor-fair-table-scaled-768x512.jpg 768w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Ellis-Oppenheim-and-woman-at-vendor-fair-table-scaled-1536x1024.jpg 1536w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Ellis-Oppenheim-and-woman-at-vendor-fair-table-scaled-2048x1366.jpg 2048w\" sizes=\"(max-width: 2560px) 100vw, 2560px\" \/><\/div>\t\t\t\t<div class=\"timeline-item__card-content\">\n\t\t\t\t\t<div class=\"timeline-item__meta\"><\/div><h3 class=\"timeline-item__card-title\">2019<br \/>Nouvelles directives de soins pour la DM2 et les enfants<\/h3><div class=\"timeline-item__card-desc\"><p>La MDF a \u00e9tendu les directives consensuelles aux adultes atteints de DM2 et aux enfants atteints de DM1 cong\u00e9nitale ou infantile, tout en introduisant un guide de r\u00e9f\u00e9rence rapide sur l\u2019anesth\u00e9sie d\u2019une page. Ces ressources ont traduit le consensus des experts en outils pratiques que les familles pouvaient apporter dans les milieux cliniques, renfor\u00e7ant la s\u00e9curit\u00e9 et la coh\u00e9rence des soins \u00e0 travers les types de DM et les \u00e2ges. <\/p>\n<ul>\n<li><a href=\"https:\/\/myotonic.org\/resources\/anesthesia-guidelines\/\">Directives d\u2019anesth\u00e9sie de la MDF<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/resources\/clinical-care-recommendations-for-adults-with-myotonic-dystrophy-type-2\/\">Recommandations de soins cliniques pour les adultes atteints de DM2<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/resources\/clinical-care-recommendations-for-children-with-myotonic-dystrophy-type-1\/\">Recommandations de soins cliniques pour les enfants atteints de DM1<\/a><\/li>\n<\/ul><\/div>\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t<div class=\"timeline-item__card-arrow\"><\/div>\n\t<\/div>\n\t<div class=\"timeline-item__point\"><div class=\"timeline-item__point-content timeline-item__point-content--icon\"><span class=\"jet-elements-icon\"><i aria-hidden=\"true\" class=\"mdf-custom-icon my-custom-icon-mdfrecord-button\"><\/i><\/span><\/div><\/div><div class=\"timeline-item__meta\"><div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"2560\" height=\"1707\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Ellis-Oppenheim-and-woman-at-vendor-fair-table-scaled.jpg\" class=\"attachment-full size-full wp-image-27306\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Ellis-Oppenheim-and-woman-at-vendor-fair-table-scaled.jpg 2560w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Ellis-Oppenheim-and-woman-at-vendor-fair-table-scaled-300x200.jpg 300w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Ellis-Oppenheim-and-woman-at-vendor-fair-table-scaled-1024x683.jpg 1024w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Ellis-Oppenheim-and-woman-at-vendor-fair-table-scaled-768x512.jpg 768w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Ellis-Oppenheim-and-woman-at-vendor-fair-table-scaled-1536x1024.jpg 1536w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Ellis-Oppenheim-and-woman-at-vendor-fair-table-scaled-2048x1366.jpg 2048w\" sizes=\"(max-width: 2560px) 100vw, 2560px\" \/><\/div><\/div><\/div><div class=\"jet-timeline-item  elementor-repeater-item-5896881-20 jet-timeline-item--image-outside_after\">\n\t<div class=\"timeline-item__card\">\n\t\t<div class=\"timeline-item__card-inner\">\n\t\t\t\t<div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"2560\" height=\"1707\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Tim-Haylon-Lisa-Harvey-Jeremy-Kelly-award-ceremony-scaled.jpg\" class=\"attachment-full size-full wp-image-27307\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Tim-Haylon-Lisa-Harvey-Jeremy-Kelly-award-ceremony-scaled.jpg 2560w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Tim-Haylon-Lisa-Harvey-Jeremy-Kelly-award-ceremony-scaled-300x200.jpg 300w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Tim-Haylon-Lisa-Harvey-Jeremy-Kelly-award-ceremony-scaled-1024x683.jpg 1024w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Tim-Haylon-Lisa-Harvey-Jeremy-Kelly-award-ceremony-scaled-768x512.jpg 768w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Tim-Haylon-Lisa-Harvey-Jeremy-Kelly-award-ceremony-scaled-1536x1024.jpg 1536w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Tim-Haylon-Lisa-Harvey-Jeremy-Kelly-award-ceremony-scaled-2048x1366.jpg 2048w\" sizes=\"(max-width: 2560px) 100vw, 2560px\" \/><\/div>\t\t\t\t<div class=\"timeline-item__card-content\">\n\t\t\t\t\t<div class=\"timeline-item__meta\"><\/div><h3 class=\"timeline-item__card-title\">2019<br \/>L\u2019h\u00e9ritage de plaidoyer de Kayla Vittek<\/h3><div class=\"timeline-item__card-desc\"><p>La MDF a cr\u00e9\u00e9 le prix comm\u00e9moratif Kayla Vittek pour le d\u00e9fenseur communautaire exceptionnel afin de perp\u00e9tuer l\u2019h\u00e9ritage d\u2019une jeune d\u00e9fenseure qui vivait avec une DM cong\u00e9nitale et a t\u00e9moign\u00e9 devant le Congr\u00e8s avec sa m\u00e8re, Lisa Harvey-Duren, en 2014. Remis chaque ann\u00e9e, ce prix r\u00e9compense les membres de la communaut\u00e9 qui sensibilisent le public, plaident pour la recherche et les ressources, et aident \u00e0 fa\u00e7onner un avenir plus solide pour les personnes touch\u00e9es par la DM. <\/p>\n<ul>\n<li><a href=\"https:\/\/myotonic.org\/team\/lisa-harvey\/\">Rencontrez Lisa Harvey-Duren et d\u00e9couvrez l\u2019histoire de Kayla<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/events\/2019-myotonic-annual-conference-in-philadelphia-pa\/\">Conf\u00e9rence annuelle 2019 de la MDF<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/events\/conferences\/\">Archives des conf\u00e9rences de la MDF<\/a><\/li>\n<\/ul><\/div>\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t<div class=\"timeline-item__card-arrow\"><\/div>\n\t<\/div>\n\t<div class=\"timeline-item__point\"><div class=\"timeline-item__point-content timeline-item__point-content--icon\"><span class=\"jet-elements-icon\"><i aria-hidden=\"true\" class=\"mdf-custom-icon my-custom-icon-mdfrecord-button\"><\/i><\/span><\/div><\/div><div class=\"timeline-item__meta\"><div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"2560\" height=\"1707\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Tim-Haylon-Lisa-Harvey-Jeremy-Kelly-award-ceremony-scaled.jpg\" class=\"attachment-full size-full wp-image-27307\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Tim-Haylon-Lisa-Harvey-Jeremy-Kelly-award-ceremony-scaled.jpg 2560w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Tim-Haylon-Lisa-Harvey-Jeremy-Kelly-award-ceremony-scaled-300x200.jpg 300w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Tim-Haylon-Lisa-Harvey-Jeremy-Kelly-award-ceremony-scaled-1024x683.jpg 1024w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Tim-Haylon-Lisa-Harvey-Jeremy-Kelly-award-ceremony-scaled-768x512.jpg 768w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Tim-Haylon-Lisa-Harvey-Jeremy-Kelly-award-ceremony-scaled-1536x1024.jpg 1536w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Tim-Haylon-Lisa-Harvey-Jeremy-Kelly-award-ceremony-scaled-2048x1366.jpg 2048w\" sizes=\"(max-width: 2560px) 100vw, 2560px\" \/><\/div><\/div><\/div><div class=\"jet-timeline-item  elementor-repeater-item-5896881-21 jet-timeline-item--image-outside_after\">\n\t<div class=\"timeline-item__card\">\n\t\t<div class=\"timeline-item__card-inner\">\n\t\t\t\t<div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"600\" height=\"337\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/ask-expert-covid-vaccines-da-thumb-real.jpg\" class=\"attachment-full size-full wp-image-13582\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/ask-expert-covid-vaccines-da-thumb-real.jpg 600w, https:\/\/myotonic.org\/wp-content\/uploads\/ask-expert-covid-vaccines-da-thumb-real-300x169.jpg 300w\" sizes=\"(max-width: 600px) 100vw, 600px\" \/><\/div>\t\t\t\t<div class=\"timeline-item__card-content\">\n\t\t\t\t\t<div class=\"timeline-item__meta\"><\/div><h3 class=\"timeline-item__card-title\">2020<br \/>Cr\u00e9er un soutien et une \u00e9ducation virtuels permanents<\/h3><div class=\"timeline-item__card-desc\"><p>Lorsque la COVID-19 a interrompu les soins et les liens en personne, la MDF a \u00e9largi ses groupes de soutien virtuels, lanc\u00e9 sa s\u00e9rie de webinaires du vendredi apr\u00e8s-midi, transf\u00e9r\u00e9 la conf\u00e9rence en ligne et publi\u00e9 des directives cliniques et pratiques opportunes. Cette r\u00e9ponse a acc\u00e9l\u00e9r\u00e9 l\u2019acc\u00e8s permanent au soutien par les pairs et \u00e0 l\u2019expertise de confiance au-del\u00e0 des fronti\u00e8res g\u00e9ographiques et a \u00e9tabli des programmes num\u00e9riques qui se sont poursuivis apr\u00e8s la crise imm\u00e9diate. <\/p>\n<ul>\n<li><a href=\"https:\/\/myotonic.org\/support\/support-groups\/\">Groupes de soutien de la MDF<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/digital-academy\/\">Acad\u00e9mie num\u00e9rique de la MDF<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/events\/2020-virtual-mdf-annual-conference\/\">Conf\u00e9rence virtuelle 2020 de la MDF<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/wp-content\/uploads\/MDF-2020-Virtual-Conference-Program.pdf\">Programme de la conf\u00e9rence virtuelle 2020<\/a><\/li>\n<\/ul><\/div>\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t<div class=\"timeline-item__card-arrow\"><\/div>\n\t<\/div>\n\t<div class=\"timeline-item__point\"><div class=\"timeline-item__point-content timeline-item__point-content--icon\"><span class=\"jet-elements-icon\"><i aria-hidden=\"true\" class=\"mdf-custom-icon my-custom-icon-mdfrecord-button\"><\/i><\/span><\/div><\/div><div class=\"timeline-item__meta\"><div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"600\" height=\"337\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/ask-expert-covid-vaccines-da-thumb-real.jpg\" class=\"attachment-full size-full wp-image-13582\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/ask-expert-covid-vaccines-da-thumb-real.jpg 600w, https:\/\/myotonic.org\/wp-content\/uploads\/ask-expert-covid-vaccines-da-thumb-real-300x169.jpg 300w\" sizes=\"(max-width: 600px) 100vw, 600px\" \/><\/div><\/div><\/div><div class=\"jet-timeline-item  elementor-repeater-item-5896881-22 jet-timeline-item--image-outside_after\">\n\t<div class=\"timeline-item__card\">\n\t\t<div class=\"timeline-item__card-inner\">\n\t\t\t\t<div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"2560\" height=\"1707\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Veronica-Dunning-Bonnie-Nahama-Leslie-Krongold-good-yoga-shot-scaled.jpg\" class=\"attachment-full size-full wp-image-27308\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Veronica-Dunning-Bonnie-Nahama-Leslie-Krongold-good-yoga-shot-scaled.jpg 2560w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Veronica-Dunning-Bonnie-Nahama-Leslie-Krongold-good-yoga-shot-scaled-300x200.jpg 300w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Veronica-Dunning-Bonnie-Nahama-Leslie-Krongold-good-yoga-shot-scaled-1024x683.jpg 1024w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Veronica-Dunning-Bonnie-Nahama-Leslie-Krongold-good-yoga-shot-scaled-768x512.jpg 768w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Veronica-Dunning-Bonnie-Nahama-Leslie-Krongold-good-yoga-shot-scaled-1536x1024.jpg 1536w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Veronica-Dunning-Bonnie-Nahama-Leslie-Krongold-good-yoga-shot-scaled-2048x1366.jpg 2048w\" sizes=\"(max-width: 2560px) 100vw, 2560px\" \/><\/div>\t\t\t\t<div class=\"timeline-item__card-content\">\n\t\t\t\t\t<div class=\"timeline-item__meta\"><\/div><h3 class=\"timeline-item__card-title\">2020<br \/>Faire du mouvement une partie du bien-vivre avec la DM<\/h3><div class=\"timeline-item__card-desc\"><p>La MDF a publi\u00e9 un guide d\u2019exercice en 2020 et a d\u00e9velopp\u00e9 \u00ab Myotonic Dystrophy In Motion \u00bb (MDIM), une initiative communautaire qui a remplac\u00e9 l\u2019incertitude et les hypoth\u00e8ses obsol\u00e8tes par des conseils pratiques, fond\u00e9s sur des donn\u00e9es probantes, sur le mouvement adapt\u00e9. Le premier mois de sensibilisation MDIM en 2024 a ajout\u00e9 des webinaires accessibles, des activit\u00e9s de mouvement et des liens individuels entre pairs. <\/p>\n<ul>\n<li><a href=\"https:\/\/www.myotonic.org\/myotonic-dystrophy-motion\">Dystrophie Myotonique En Mouvement<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/resources\/exercise-and-movement-resources\/\">Ressources sur l\u2019exercice et le mouvement<\/a><\/li>\n<\/ul><\/div>\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t<div class=\"timeline-item__card-arrow\"><\/div>\n\t<\/div>\n\t<div class=\"timeline-item__point\"><div class=\"timeline-item__point-content timeline-item__point-content--icon\"><span class=\"jet-elements-icon\"><i aria-hidden=\"true\" class=\"mdf-custom-icon my-custom-icon-mdfrecord-button\"><\/i><\/span><\/div><\/div><div class=\"timeline-item__meta\"><div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"2560\" height=\"1707\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Veronica-Dunning-Bonnie-Nahama-Leslie-Krongold-good-yoga-shot-scaled.jpg\" class=\"attachment-full size-full wp-image-27308\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Veronica-Dunning-Bonnie-Nahama-Leslie-Krongold-good-yoga-shot-scaled.jpg 2560w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Veronica-Dunning-Bonnie-Nahama-Leslie-Krongold-good-yoga-shot-scaled-300x200.jpg 300w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Veronica-Dunning-Bonnie-Nahama-Leslie-Krongold-good-yoga-shot-scaled-1024x683.jpg 1024w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Veronica-Dunning-Bonnie-Nahama-Leslie-Krongold-good-yoga-shot-scaled-768x512.jpg 768w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Veronica-Dunning-Bonnie-Nahama-Leslie-Krongold-good-yoga-shot-scaled-1536x1024.jpg 1536w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Veronica-Dunning-Bonnie-Nahama-Leslie-Krongold-good-yoga-shot-scaled-2048x1366.jpg 2048w\" sizes=\"(max-width: 2560px) 100vw, 2560px\" \/><\/div><\/div><\/div><div class=\"jet-timeline-item  elementor-repeater-item-5896881-23 jet-timeline-item--image-outside_after\">\n\t<div class=\"timeline-item__card\">\n\t\t<div class=\"timeline-item__card-inner\">\n\t\t\t\t<div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"800\" height=\"800\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/10_International-DM-Awareness-Day-Logo-800px.jpg\" class=\"attachment-full size-full wp-image-13415\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/10_International-DM-Awareness-Day-Logo-800px.jpg 800w, https:\/\/myotonic.org\/wp-content\/uploads\/10_International-DM-Awareness-Day-Logo-800px-300x300.jpg 300w, https:\/\/myotonic.org\/wp-content\/uploads\/10_International-DM-Awareness-Day-Logo-800px-150x150.jpg 150w, https:\/\/myotonic.org\/wp-content\/uploads\/10_International-DM-Awareness-Day-Logo-800px-768x768.jpg 768w\" sizes=\"(max-width: 800px) 100vw, 800px\" \/><\/div>\t\t\t\t<div class=\"timeline-item__card-content\">\n\t\t\t\t\t<div class=\"timeline-item__meta\"><\/div><h3 class=\"timeline-item__card-title\">2021<br \/>B\u00e2tir un mouvement mondial pour la sensibilisation \u00e0 la DM<\/h3><div class=\"timeline-item__card-desc\"><p>La MDF a aid\u00e9 \u00e0 unir des organisations du monde entier pour \u00e9tablir l\u2019Alliance mondiale pour la sensibilisation \u00e0 la dystrophie myotonique et la premi\u00e8re Journ\u00e9e internationale de sensibilisation \u00e0 la dystrophie myotonique le 15 septembre. L\u2019Alliance a cr\u00e9\u00e9 une infrastructure durable pour des messages partag\u00e9s, une action coordonn\u00e9e et une meilleure compr\u00e9hension du public \u00e0 travers les fronti\u00e8res nationales et organisationnelles. <\/p>\n<ul>\n<li><a href=\"https:\/\/myotonic.org\/events\/international-myotonic-dystrophy-awareness-day\/\">Journ\u00e9e internationale de sensibilisation \u00e0 la dystrophie myotonique<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/global-alliance-60-myotonic-dystrophy-organizations-recognizes-5th-annual-international-myotonic\/\">Alliance mondiale : plus de 60 organisations<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/wp-content\/uploads\/MDF-Annual-Report-FY2021.pdf\">Rapport annuel 2021 de la MDF<\/a><\/li>\n<\/ul><\/div>\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t<div class=\"timeline-item__card-arrow\"><\/div>\n\t<\/div>\n\t<div class=\"timeline-item__point\"><div class=\"timeline-item__point-content timeline-item__point-content--icon\"><span class=\"jet-elements-icon\"><i aria-hidden=\"true\" class=\"mdf-custom-icon my-custom-icon-mdfrecord-button\"><\/i><\/span><\/div><\/div><div class=\"timeline-item__meta\"><div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"800\" height=\"800\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/10_International-DM-Awareness-Day-Logo-800px.jpg\" class=\"attachment-full size-full wp-image-13415\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/10_International-DM-Awareness-Day-Logo-800px.jpg 800w, https:\/\/myotonic.org\/wp-content\/uploads\/10_International-DM-Awareness-Day-Logo-800px-300x300.jpg 300w, https:\/\/myotonic.org\/wp-content\/uploads\/10_International-DM-Awareness-Day-Logo-800px-150x150.jpg 150w, https:\/\/myotonic.org\/wp-content\/uploads\/10_International-DM-Awareness-Day-Logo-800px-768x768.jpg 768w\" sizes=\"(max-width: 800px) 100vw, 800px\" \/><\/div><\/div><\/div><div class=\"jet-timeline-item  elementor-repeater-item-5896881-24 jet-timeline-item--image-outside_after\">\n\t<div class=\"timeline-item__card\">\n\t\t<div class=\"timeline-item__card-inner\">\n\t\t\t\t<div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"2560\" height=\"1707\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Nate-Uhl-at-Poster-Session-close-up-scaled.jpg\" class=\"attachment-full size-full wp-image-27309\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Nate-Uhl-at-Poster-Session-close-up-scaled.jpg 2560w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Nate-Uhl-at-Poster-Session-close-up-scaled-300x200.jpg 300w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Nate-Uhl-at-Poster-Session-close-up-scaled-1024x683.jpg 1024w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Nate-Uhl-at-Poster-Session-close-up-scaled-768x512.jpg 768w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Nate-Uhl-at-Poster-Session-close-up-scaled-1536x1024.jpg 1536w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Nate-Uhl-at-Poster-Session-close-up-scaled-2048x1366.jpg 2048w\" sizes=\"(max-width: 2560px) 100vw, 2560px\" \/><\/div>\t\t\t\t<div class=\"timeline-item__card-content\">\n\t\t\t\t\t<div class=\"timeline-item__meta\"><\/div><h3 class=\"timeline-item__card-title\">2021<br \/>Aider la communaut\u00e9 de la DM \u00e0 suivre le d\u00e9veloppement des traitements<\/h3><div class=\"timeline-item__card-desc\"><p>D\u00e8s mars 2021, la MDF partageait un tableau public organisant les traitements potentiels de la DM par stade de d\u00e9veloppement. La MDF maintient d\u00e9sormais un outil plus complet reliant les programmes actifs et pass\u00e9s aux informations sur les essais et aux mises \u00e0 jour de la communaut\u00e9. La ressource actuelle con\u00e7ue par la MDF cr\u00e9dite Nate Uhl, membre de la communaut\u00e9, pour l\u2019analyse exhaustive de la recherche et la vision originale derri\u00e8re le pipeline.  <\/p>\n<ul>\n<li><a href=\"https:\/\/myotonic.org\/resources\/drug-development-pipeline\/\">Pipeline de d\u00e9veloppement de m\u00e9dicaments de la MDF<\/a><\/li>\n<li><a href=\"https:\/\/www.myotonic.org\/sites\/default\/files\/pages\/files\/Myotonic-Dystrophy-Drug-Development-Pipeline-as-of-March-8th-2021.pdf\">Pipeline de d\u00e9veloppement de m\u00e9dicaments pour la DM du 8 mars 2021<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/meet-dm-drug-developers\/\">Rencontrez les d\u00e9veloppeurs de m\u00e9dicaments pour la DM<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/events\/2021-virtual-mdf-annual-conference\/\">Conf\u00e9rence annuelle virtuelle 2021 de la MDF<\/a><\/li>\n<\/ul><\/div>\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t<div class=\"timeline-item__card-arrow\"><\/div>\n\t<\/div>\n\t<div class=\"timeline-item__point\"><div class=\"timeline-item__point-content timeline-item__point-content--icon\"><span class=\"jet-elements-icon\"><i aria-hidden=\"true\" class=\"mdf-custom-icon my-custom-icon-mdfrecord-button\"><\/i><\/span><\/div><\/div><div class=\"timeline-item__meta\"><div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"2560\" height=\"1707\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Nate-Uhl-at-Poster-Session-close-up-scaled.jpg\" class=\"attachment-full size-full wp-image-27309\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Nate-Uhl-at-Poster-Session-close-up-scaled.jpg 2560w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Nate-Uhl-at-Poster-Session-close-up-scaled-300x200.jpg 300w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Nate-Uhl-at-Poster-Session-close-up-scaled-1024x683.jpg 1024w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Nate-Uhl-at-Poster-Session-close-up-scaled-768x512.jpg 768w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Nate-Uhl-at-Poster-Session-close-up-scaled-1536x1024.jpg 1536w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Nate-Uhl-at-Poster-Session-close-up-scaled-2048x1366.jpg 2048w\" sizes=\"(max-width: 2560px) 100vw, 2560px\" \/><\/div><\/div><\/div><div class=\"jet-timeline-item  elementor-repeater-item-5896881-25 jet-timeline-item--image-outside_after\">\n\t<div class=\"timeline-item__card\">\n\t\t<div class=\"timeline-item__card-inner\">\n\t\t\t\t<div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"1680\" height=\"1050\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Avidity-screen-cap.png\" class=\"attachment-full size-full wp-image-27310\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Avidity-screen-cap.png 1680w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Avidity-screen-cap-300x188.png 300w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Avidity-screen-cap-1024x640.png 1024w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Avidity-screen-cap-768x480.png 768w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Avidity-screen-cap-1536x960.png 1536w\" sizes=\"(max-width: 1680px) 100vw, 1680px\" \/><\/div>\t\t\t\t<div class=\"timeline-item__card-content\">\n\t\t\t\t\t<div class=\"timeline-item__meta\"><\/div><h3 class=\"timeline-item__card-title\">2021<br \/>Ouvrir l\u2019acc\u00e8s aux experts et aux d\u00e9veloppeurs de m\u00e9dicaments pour la DM<\/h3><div class=\"timeline-item__card-desc\"><p>\u00c0 partir de 2021 avec \u00ab Rencontrez les d\u00e9veloppeurs de m\u00e9dicaments pour la DM \u00bb, suivi par une programmation \u00e9largie \u00ab Demandez \u00e0 l\u2019expert \u00bb, la MDF a cr\u00e9\u00e9 des occasions r\u00e9guli\u00e8res pour les membres de la communaut\u00e9 d\u2019entendre directement des cliniciens, des th\u00e9rapeutes, des chercheurs et des entreprises, et de poser des questions en temps r\u00e9el. Les enregistrements dans l\u2019Acad\u00e9mie num\u00e9rique ont rendu ces conversations disponibles \u00e0 la demande. <\/p>\n<ul>\n<li><a href=\"https:\/\/myotonic.org\/ask-the-expert-webinars\/\">S\u00e9rie de webinaires \u00ab Demandez \u00e0 l\u2019expert \u00bb<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/meet-dm-drug-developers\/\">Rencontrez les d\u00e9veloppeurs de m\u00e9dicaments pour la DM<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/digital-academy\/\">Acad\u00e9mie num\u00e9rique de la MDF<\/a><\/li>\n<\/ul><\/div>\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t<div class=\"timeline-item__card-arrow\"><\/div>\n\t<\/div>\n\t<div class=\"timeline-item__point\"><div class=\"timeline-item__point-content timeline-item__point-content--icon\"><span class=\"jet-elements-icon\"><i aria-hidden=\"true\" class=\"mdf-custom-icon my-custom-icon-mdfrecord-button\"><\/i><\/span><\/div><\/div><div class=\"timeline-item__meta\"><div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"1680\" height=\"1050\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Avidity-screen-cap.png\" class=\"attachment-full size-full wp-image-27310\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Avidity-screen-cap.png 1680w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Avidity-screen-cap-300x188.png 300w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Avidity-screen-cap-1024x640.png 1024w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Avidity-screen-cap-768x480.png 768w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/Avidity-screen-cap-1536x960.png 1536w\" sizes=\"(max-width: 1680px) 100vw, 1680px\" \/><\/div><\/div><\/div><div class=\"jet-timeline-item  elementor-repeater-item-5896881-26 jet-timeline-item--image-outside_after\">\n\t<div class=\"timeline-item__card\">\n\t\t<div class=\"timeline-item__card-inner\">\n\t\t\t\t<div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"868\" height=\"1120\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/MDFStrategiCPlanCoverpng.png\" class=\"attachment-full size-full wp-image-27311\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/MDFStrategiCPlanCoverpng.png 868w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/MDFStrategiCPlanCoverpng-233x300.png 233w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/MDFStrategiCPlanCoverpng-794x1024.png 794w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/MDFStrategiCPlanCoverpng-768x991.png 768w\" sizes=\"(max-width: 868px) 100vw, 868px\" \/><\/div>\t\t\t\t<div class=\"timeline-item__card-content\">\n\t\t\t\t\t<div class=\"timeline-item__meta\"><\/div><h3 class=\"timeline-item__card-title\">2021<br \/>La communaut\u00e9 fa\u00e7onne le plan strat\u00e9gique de la MDF<\/h3><div class=\"timeline-item__card-desc\"><p>La MDF a adopt\u00e9 son premier plan strat\u00e9gique complet, fa\u00e7onn\u00e9 par les contributions de plus de 800 membres de la communaut\u00e9 et parties prenantes. Le plan a actualis\u00e9 la vision et la mission de la MDF, \u00e9tabli des valeurs partag\u00e9es et une th\u00e9orie du changement, et organis\u00e9 le travail de la Fondation autour de la communaut\u00e9, des soins, de la gu\u00e9rison et de la force organisationnelle, rendant explicite la responsabilit\u00e9 envers la communaut\u00e9. <\/p>\n<ul>\n<li><a href=\"https:\/\/myotonic.org\/wp-content\/uploads\/MDF_StrategicPlan_Distribution_2022.pdf\">Plan strat\u00e9gique 2021-2024 de la MDF<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/mission\/\">Mission de la MDF<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/wp-content\/uploads\/MDF-Annual-Report-FY2021.pdf\">Rapport annuel 2021 de la MDF<\/a><\/li>\n<\/ul><\/div>\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t<div class=\"timeline-item__card-arrow\"><\/div>\n\t<\/div>\n\t<div class=\"timeline-item__point\"><div class=\"timeline-item__point-content timeline-item__point-content--icon\"><span class=\"jet-elements-icon\"><i aria-hidden=\"true\" class=\"mdf-custom-icon my-custom-icon-mdfrecord-button\"><\/i><\/span><\/div><\/div><div class=\"timeline-item__meta\"><div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"868\" height=\"1120\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/MDFStrategiCPlanCoverpng.png\" class=\"attachment-full size-full wp-image-27311\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/MDFStrategiCPlanCoverpng.png 868w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/MDFStrategiCPlanCoverpng-233x300.png 233w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/MDFStrategiCPlanCoverpng-794x1024.png 794w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/MDFStrategiCPlanCoverpng-768x991.png 768w\" sizes=\"(max-width: 868px) 100vw, 868px\" \/><\/div><\/div><\/div><div class=\"jet-timeline-item  elementor-repeater-item-5896881-27 jet-timeline-item--image-outside_after\">\n\t<div class=\"timeline-item__card\">\n\t\t<div class=\"timeline-item__card-inner\">\n\t\t\t\t<div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"800\" height=\"800\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/9_International-DM-Awareness-Day-Logo-800px.jpg\" class=\"attachment-full size-full wp-image-13358\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/9_International-DM-Awareness-Day-Logo-800px.jpg 800w, https:\/\/myotonic.org\/wp-content\/uploads\/9_International-DM-Awareness-Day-Logo-800px-300x300.jpg 300w, https:\/\/myotonic.org\/wp-content\/uploads\/9_International-DM-Awareness-Day-Logo-800px-150x150.jpg 150w, https:\/\/myotonic.org\/wp-content\/uploads\/9_International-DM-Awareness-Day-Logo-800px-768x768.jpg 768w\" sizes=\"(max-width: 800px) 100vw, 800px\" \/><\/div>\t\t\t\t<div class=\"timeline-item__card-content\">\n\t\t\t\t\t<div class=\"timeline-item__meta\"><\/div><h3 class=\"timeline-item__card-title\">2022<br \/>Reconnaissance nationale et financement f\u00e9d\u00e9ral record pour la recherche<\/h3><div class=\"timeline-item__card-desc\"><p>Le S\u00e9nat am\u00e9ricain a officiellement reconnu le 15 septembre comme la Journ\u00e9e internationale de sensibilisation \u00e0 la dystrophie myotonique par la r\u00e9solution 772 du S\u00e9nat. La MDF a \u00e9galement fait \u00e9tat d\u2019un montant record de 8,8 millions de dollars en bourses PRMRP accord\u00e9es par le gouvernement am\u00e9ricain aux chercheurs sur la DM et a lanc\u00e9 un programme de subventions de recherche pour le d\u00e9but de carri\u00e8re, montrant comment la visibilit\u00e9, le travail politique et l\u2019investissement dans le talent scientifique commen\u00e7aient \u00e0 se renforcer mutuellement. <\/p>\n<ul>\n<li><a href=\"https:\/\/myotonic.org\/get-involved\/advocate\/\">Plaidoyer de la MDF<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/wp-content\/uploads\/MDF_2022-Annual-Report.pdf\">Rapport annuel 2022 de la MDF<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/events\/2022-mdf-annual-conference-san-diego-ca\/\">Conf\u00e9rence annuelle 2022 de la MDF<\/a><\/li>\n<\/ul><\/div>\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t<div class=\"timeline-item__card-arrow\"><\/div>\n\t<\/div>\n\t<div class=\"timeline-item__point\"><div class=\"timeline-item__point-content timeline-item__point-content--icon\"><span class=\"jet-elements-icon\"><i aria-hidden=\"true\" class=\"mdf-custom-icon my-custom-icon-mdfrecord-button\"><\/i><\/span><\/div><\/div><div class=\"timeline-item__meta\"><div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"800\" height=\"800\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/9_International-DM-Awareness-Day-Logo-800px.jpg\" class=\"attachment-full size-full wp-image-13358\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/9_International-DM-Awareness-Day-Logo-800px.jpg 800w, https:\/\/myotonic.org\/wp-content\/uploads\/9_International-DM-Awareness-Day-Logo-800px-300x300.jpg 300w, https:\/\/myotonic.org\/wp-content\/uploads\/9_International-DM-Awareness-Day-Logo-800px-150x150.jpg 150w, https:\/\/myotonic.org\/wp-content\/uploads\/9_International-DM-Awareness-Day-Logo-800px-768x768.jpg 768w\" sizes=\"(max-width: 800px) 100vw, 800px\" \/><\/div><\/div><\/div><div class=\"jet-timeline-item  elementor-repeater-item-5896881-28 jet-timeline-item--image-outside_after\">\n\t<div class=\"timeline-item__card\">\n\t\t<div class=\"timeline-item__card-inner\">\n\t\t\t\t<div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"977\" height=\"828\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/MDF-website-spanish-2024.png\" class=\"attachment-full size-full wp-image-27312\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/MDF-website-spanish-2024.png 977w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/MDF-website-spanish-2024-300x254.png 300w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/MDF-website-spanish-2024-768x651.png 768w\" sizes=\"(max-width: 977px) 100vw, 977px\" \/><\/div>\t\t\t\t<div class=\"timeline-item__card-content\">\n\t\t\t\t\t<div class=\"timeline-item__meta\"><\/div><h3 class=\"timeline-item__card-title\">2022<br \/>\u00c9tendre les ressources pratiques \u00e0 travers les langues<\/h3><div class=\"timeline-item__card-desc\"><p>La MDF a \u00e9largi l\u2019acc\u00e8s aux conseils pratiques gr\u00e2ce \u00e0 des centres de ressources en espagnol et en allemand, des programmes de soutien multilingues et des ressources nouvelles ou traduites. En 2024, la collection comprenait des conseils sur la sant\u00e9 mentale, l\u2019exercice, la sant\u00e9 cardiaque, la nutrition, la physioth\u00e9rapie, l\u2019anesth\u00e9sie et les alertes m\u00e9dicales, aidant les familles et les cliniciens \u00e0 utiliser des informations de confiance dans toutes les langues et tous les contextes de soins. <\/p>\n<ul>\n<li><a href=\"https:\/\/myotonic.org\/resources\/\">Ressources de la MDF<\/a>.<\/li>\n<li><a href=\"https:\/\/myotonic.org\/wp-content\/uploads\/MDF_Annual-Report_2023.pdf\">Rapport annuel 2023 de la MDF<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/wp-content\/uploads\/MDF_Annual-Report_2024.pdf\">Rapport annuel 2024 de la MDF<\/a><\/li>\n<\/ul><\/div>\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t<div class=\"timeline-item__card-arrow\"><\/div>\n\t<\/div>\n\t<div class=\"timeline-item__point\"><div class=\"timeline-item__point-content timeline-item__point-content--icon\"><span class=\"jet-elements-icon\"><i aria-hidden=\"true\" class=\"mdf-custom-icon my-custom-icon-mdfrecord-button\"><\/i><\/span><\/div><\/div><div class=\"timeline-item__meta\"><div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"977\" height=\"828\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/MDF-website-spanish-2024.png\" class=\"attachment-full size-full wp-image-27312\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/MDF-website-spanish-2024.png 977w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/MDF-website-spanish-2024-300x254.png 300w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/MDF-website-spanish-2024-768x651.png 768w\" sizes=\"(max-width: 977px) 100vw, 977px\" \/><\/div><\/div><\/div><div class=\"jet-timeline-item  elementor-repeater-item-5896881-29 jet-timeline-item--image-outside_after\">\n\t<div class=\"timeline-item__card\">\n\t\t<div class=\"timeline-item__card-inner\">\n\t\t\t\t<div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"1080\" height=\"1080\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/Research2.png\" class=\"attachment-full size-full wp-image-12336\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/Research2.png 1080w, https:\/\/myotonic.org\/wp-content\/uploads\/Research2-300x300.png 300w, https:\/\/myotonic.org\/wp-content\/uploads\/Research2-1024x1024.png 1024w, https:\/\/myotonic.org\/wp-content\/uploads\/Research2-150x150.png 150w, https:\/\/myotonic.org\/wp-content\/uploads\/Research2-768x768.png 768w\" sizes=\"(max-width: 1080px) 100vw, 1080px\" \/><\/div>\t\t\t\t<div class=\"timeline-item__card-content\">\n\t\t\t\t\t<div class=\"timeline-item__meta\"><\/div><h3 class=\"timeline-item__card-title\">2023<br \/>Investir dans la prochaine g\u00e9n\u00e9ration de chercheurs sur la DM<\/h3><div class=\"timeline-item__card-desc\"><p>Rien qu\u2019en 2023, la MDF a engag\u00e9 plus d\u2019un million de dollars dans des subventions de recherche et des bourses, incluant le soutien \u00e0 cinq boursiers de recherche et trois chercheurs en d\u00e9but de carri\u00e8re. Cet investissement a fait progresser des projets prometteurs tout en r\u00e9pondant \u00e0 un besoin strat\u00e9gique : retenir des scientifiques qualifi\u00e9s et former les futurs leaders dans un domaine des maladies rares qui d\u00e9pend d\u2019une expertise durable. <\/p>\n<ul>\n<li><a href=\"https:\/\/myotonic.org\/mdf-board-directors-approves-over-1-million-funding-2023-research-grants-fellowships\/\">Annonce du financement de la recherche 2023<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/research\/grants-and-funding\/\">Subventions de recherche et financement de la MDF<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/wp-content\/uploads\/MDF_Annual-Report_2023.pdf\">Rapport annuel 2023 de la MDF<\/a><\/li>\n<\/ul><\/div>\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t<div class=\"timeline-item__card-arrow\"><\/div>\n\t<\/div>\n\t<div class=\"timeline-item__point\"><div class=\"timeline-item__point-content timeline-item__point-content--icon\"><span class=\"jet-elements-icon\"><i aria-hidden=\"true\" class=\"mdf-custom-icon my-custom-icon-mdfrecord-button\"><\/i><\/span><\/div><\/div><div class=\"timeline-item__meta\"><div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"1080\" height=\"1080\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/Research2.png\" class=\"attachment-full size-full wp-image-12336\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/Research2.png 1080w, https:\/\/myotonic.org\/wp-content\/uploads\/Research2-300x300.png 300w, https:\/\/myotonic.org\/wp-content\/uploads\/Research2-1024x1024.png 1024w, https:\/\/myotonic.org\/wp-content\/uploads\/Research2-150x150.png 150w, https:\/\/myotonic.org\/wp-content\/uploads\/Research2-768x768.png 768w\" sizes=\"(max-width: 1080px) 100vw, 1080px\" \/><\/div><\/div><\/div><div class=\"jet-timeline-item  elementor-repeater-item-5896881-30 jet-timeline-item--image-outside_after\">\n\t<div class=\"timeline-item__card\">\n\t\t<div class=\"timeline-item__card-inner\">\n\t\t\t\t<div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"1200\" height=\"960\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/2023-Advocates-on-Steps.png\" class=\"attachment-full size-full wp-image-13123\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/2023-Advocates-on-Steps.png 1200w, https:\/\/myotonic.org\/wp-content\/uploads\/2023-Advocates-on-Steps-300x240.png 300w, https:\/\/myotonic.org\/wp-content\/uploads\/2023-Advocates-on-Steps-1024x819.png 1024w, https:\/\/myotonic.org\/wp-content\/uploads\/2023-Advocates-on-Steps-768x614.png 768w\" sizes=\"(max-width: 1200px) 100vw, 1200px\" \/><\/div>\t\t\t\t<div class=\"timeline-item__card-content\">\n\t\t\t\t\t<div class=\"timeline-item__meta\"><\/div><h3 class=\"timeline-item__card-title\">2023<br \/>La communaut\u00e9 de la DM retourne au Capitole<\/h3><div class=\"timeline-item__card-desc\"><p>Plus de 130 d\u00e9fenseurs de 23 \u00c9tats am\u00e9ricains et de cinq autres pays ont particip\u00e9 \u00e0 la journ\u00e9e de plaidoyer 2023 de la MDF. Au cours de plus de 100 r\u00e9unions au Congr\u00e8s, ils ont sensibilis\u00e9 les d\u00e9cideurs politiques \u00e0 la maladie, ont plaid\u00e9 sp\u00e9cifiquement pour le maintien de l\u2019\u00e9ligibilit\u00e9 au PRMRP et ont demand\u00e9 un investissement f\u00e9d\u00e9ral plus fort dans la recherche sur la DM, d\u00e9montrant \u00e0 la fois la port\u00e9e de la communaut\u00e9 et la capacit\u00e9 politique que la MDF avait b\u00e2tie depuis 2014. <\/p>\n<ul>\n<li><a href=\"https:\/\/myotonic.org\/mdf-advocates-work-secure-federal-myotonic-dystrophy-research-funding\/\">Journ\u00e9e de plaidoyer 2023<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/events\/2023-mdf-annual-conference-washington-dc\/\">Conf\u00e9rence annuelle 2023 de la MDF<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/get-involved\/advocate\/\">Plaidoyer de la MDF<\/a><\/li>\n<\/ul><\/div>\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t<div class=\"timeline-item__card-arrow\"><\/div>\n\t<\/div>\n\t<div class=\"timeline-item__point\"><div class=\"timeline-item__point-content timeline-item__point-content--icon\"><span class=\"jet-elements-icon\"><i aria-hidden=\"true\" class=\"mdf-custom-icon my-custom-icon-mdfrecord-button\"><\/i><\/span><\/div><\/div><div class=\"timeline-item__meta\"><div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"1200\" height=\"960\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/2023-Advocates-on-Steps.png\" class=\"attachment-full size-full wp-image-13123\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/2023-Advocates-on-Steps.png 1200w, https:\/\/myotonic.org\/wp-content\/uploads\/2023-Advocates-on-Steps-300x240.png 300w, https:\/\/myotonic.org\/wp-content\/uploads\/2023-Advocates-on-Steps-1024x819.png 1024w, https:\/\/myotonic.org\/wp-content\/uploads\/2023-Advocates-on-Steps-768x614.png 768w\" sizes=\"(max-width: 1200px) 100vw, 1200px\" \/><\/div><\/div><\/div><div class=\"jet-timeline-item  elementor-repeater-item-5896881-31 jet-timeline-item--image-outside_after\">\n\t<div class=\"timeline-item__card\">\n\t\t<div class=\"timeline-item__card-inner\">\n\t\t\t\t<div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"1200\" height=\"600\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/Conf-Photo_Palo-Alto_3.png\" class=\"attachment-full size-full wp-image-25524\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/Conf-Photo_Palo-Alto_3.png 1200w, https:\/\/myotonic.org\/wp-content\/uploads\/Conf-Photo_Palo-Alto_3-300x150.png 300w, https:\/\/myotonic.org\/wp-content\/uploads\/Conf-Photo_Palo-Alto_3-1024x512.png 1024w, https:\/\/myotonic.org\/wp-content\/uploads\/Conf-Photo_Palo-Alto_3-768x384.png 768w\" sizes=\"(max-width: 1200px) 100vw, 1200px\" \/><\/div>\t\t\t\t<div class=\"timeline-item__card-content\">\n\t\t\t\t\t<div class=\"timeline-item__meta\"><\/div><h3 class=\"timeline-item__card-title\">2024<br \/>Rapprocher l\u2019\u00e9ducation du domicile<\/h3><div class=\"timeline-item__card-desc\"><p>Six conf\u00e9rences r\u00e9gionales ont rapproch\u00e9 l\u2019\u00e9ducation de confiance, l\u2019expertise clinique, les mises \u00e0 jour de la recherche et les liens entre pairs des familles \u00e0 travers les \u00c9tats-Unis. La s\u00e9rie a accueilli 737 participants, dont 346 personnes assistant pour la premi\u00e8re fois \u00e0 un programme de la MDF, \u00e9largissant l\u2019acc\u00e8s tout en pr\u00e9servant le r\u00f4le de la conf\u00e9rence comme lieu d\u2019apprentissage partag\u00e9. <\/p>\n<ul>\n<li><a href=\"https:\/\/myotonic.org\/wp-content\/uploads\/MDF_Annual-Report_2024.pdf\">Rapport annuel 2024 de la MDF<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/events\/conferences\/\">Archives des conf\u00e9rences de la MDF<\/a><\/li>\n<\/ul><\/div>\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t<div class=\"timeline-item__card-arrow\"><\/div>\n\t<\/div>\n\t<div class=\"timeline-item__point\"><div class=\"timeline-item__point-content timeline-item__point-content--icon\"><span class=\"jet-elements-icon\"><i aria-hidden=\"true\" class=\"mdf-custom-icon my-custom-icon-mdfrecord-button\"><\/i><\/span><\/div><\/div><div class=\"timeline-item__meta\"><div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"1200\" height=\"600\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/Conf-Photo_Palo-Alto_3.png\" class=\"attachment-full size-full wp-image-25524\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/Conf-Photo_Palo-Alto_3.png 1200w, https:\/\/myotonic.org\/wp-content\/uploads\/Conf-Photo_Palo-Alto_3-300x150.png 300w, https:\/\/myotonic.org\/wp-content\/uploads\/Conf-Photo_Palo-Alto_3-1024x512.png 1024w, https:\/\/myotonic.org\/wp-content\/uploads\/Conf-Photo_Palo-Alto_3-768x384.png 768w\" sizes=\"(max-width: 1200px) 100vw, 1200px\" \/><\/div><\/div><\/div><div class=\"jet-timeline-item  elementor-repeater-item-5896881-32 jet-timeline-item--image-outside_after\">\n\t<div class=\"timeline-item__card\">\n\t\t<div class=\"timeline-item__card-inner\">\n\t\t\t\t<div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"1000\" height=\"667\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/grants-and-funding-img-3.jpg\" class=\"attachment-full size-full wp-image-8196\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/grants-and-funding-img-3.jpg 1000w, https:\/\/myotonic.org\/wp-content\/uploads\/grants-and-funding-img-3-300x200.jpg 300w, https:\/\/myotonic.org\/wp-content\/uploads\/grants-and-funding-img-3-768x512.jpg 768w\" sizes=\"(max-width: 1000px) 100vw, 1000px\" \/><\/div>\t\t\t\t<div class=\"timeline-item__card-content\">\n\t\t\t\t\t<div class=\"timeline-item__meta\"><\/div><h3 class=\"timeline-item__card-title\">2024<br \/>Financer la recherche prometteuse \u00e0 un stade plus pr\u00e9coce<\/h3><div class=\"timeline-item__card-desc\"><p>La MDF a lanc\u00e9 son programme de subventions pilotes pour aider les chercheurs \u00e0 tester des id\u00e9es prometteuses et \u00e0 g\u00e9n\u00e9rer les premi\u00e8res preuves n\u00e9cessaires pour concourir \u00e0 des bourses plus importantes. Parall\u00e8lement aux bourses, aux prix de d\u00e9but de carri\u00e8re et aux subventions hautement prioritaires, le programme a \u00e9largi le portefeuille de recherche de la MDF, la Fondation ayant investi 1,7 million de dollars dans des programmes de recherche cette ann\u00e9e-l\u00e0. <\/p>\n<ul>\n<li style=\"list-style-type: none\">\n<ul>\n<li><a href=\"https:\/\/myotonic.org\/wp-content\/uploads\/MDF_Annual-Report_2024.pdf\">Rapport annuel 2024 de la MDF<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/myotonic-dystrophy-foundation-mdf-launches-new-funding-resource-researchers-pilot-grants-program\/\">Programme de subventions pilotes de la MDF<\/a><\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p>\u00a0<\/p><\/div>\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t<div class=\"timeline-item__card-arrow\"><\/div>\n\t<\/div>\n\t<div class=\"timeline-item__point\"><div class=\"timeline-item__point-content timeline-item__point-content--icon\"><span class=\"jet-elements-icon\"><i aria-hidden=\"true\" class=\"mdf-custom-icon my-custom-icon-mdfrecord-button\"><\/i><\/span><\/div><\/div><div class=\"timeline-item__meta\"><div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"1000\" height=\"667\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/grants-and-funding-img-3.jpg\" class=\"attachment-full size-full wp-image-8196\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/grants-and-funding-img-3.jpg 1000w, https:\/\/myotonic.org\/wp-content\/uploads\/grants-and-funding-img-3-300x200.jpg 300w, https:\/\/myotonic.org\/wp-content\/uploads\/grants-and-funding-img-3-768x512.jpg 768w\" sizes=\"(max-width: 1000px) 100vw, 1000px\" \/><\/div><\/div><\/div><div class=\"jet-timeline-item  elementor-repeater-item-5896881-33 jet-timeline-item--image-outside_after\">\n\t<div class=\"timeline-item__card\">\n\t\t<div class=\"timeline-item__card-inner\">\n\t\t\t\t<div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"1920\" height=\"2504\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/MDF_2025_Annual-Report-thumbnail.gif\" class=\"attachment-full size-full wp-image-26340\" alt=\"\" \/><\/div>\t\t\t\t<div class=\"timeline-item__card-content\">\n\t\t\t\t\t<div class=\"timeline-item__meta\"><\/div><h3 class=\"timeline-item__card-title\">2025<br \/>Le soutien direct s\u2019accro\u00eet \u00e0 mesure que davantage de traitements atteignent les essais<\/h3><div class=\"timeline-item__card-desc\"><p>Les groupes de soutien de la MDF ont accueilli 2 394 participants, la Warmline dot\u00e9e d\u2019un personnel professionnel a assur\u00e9 plus de 800 interactions individuelles, et les ressources communautaires ont \u00e9t\u00e9 t\u00e9l\u00e9charg\u00e9es plus de 100 000 fois. La MDF a \u00e9galement investi plus de 1,5 million de dollars dans la recherche alors que 11 traitements potentiels progressaient dans les essais cliniques, montrant une capacit\u00e9 croissante \u00e0 soutenir la vie avec la DM aujourd\u2019hui tout en poursuivant les traitements futurs. <\/p>\n<ul>\n<li><a href=\"https:\/\/myotonic.org\/support\/request-warmline-support\/\">Demander un soutien Warmline<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/support\/support-groups\/\">Groupes de soutien de la MDF<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/resources\/drug-development-pipeline\/\">Pipeline de d\u00e9veloppement de m\u00e9dicaments de la MDF<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/wp-content\/uploads\/MDF_2025_Annual-Report.pdf\">Rapport annuel 2025 de la MDF<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/over-700-people-attend-2025-mdf-conference\/\">Conf\u00e9rence 2025 de la MDF<\/a><\/li>\n<\/ul><\/div>\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t<div class=\"timeline-item__card-arrow\"><\/div>\n\t<\/div>\n\t<div class=\"timeline-item__point\"><div class=\"timeline-item__point-content timeline-item__point-content--icon\"><span class=\"jet-elements-icon\"><i aria-hidden=\"true\" class=\"mdf-custom-icon my-custom-icon-mdfrecord-button\"><\/i><\/span><\/div><\/div><div class=\"timeline-item__meta\"><div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"1920\" height=\"2504\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/MDF_2025_Annual-Report-thumbnail.gif\" class=\"attachment-full size-full wp-image-26340\" alt=\"\" \/><\/div><\/div><\/div><div class=\"jet-timeline-item  elementor-repeater-item-5896881-34 jet-timeline-item--image-outside_after\">\n\t<div class=\"timeline-item__card\">\n\t\t<div class=\"timeline-item__card-inner\">\n\t\t\t\t<div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"2560\" height=\"1707\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/mdf_montreal-21-scaled.jpg\" class=\"attachment-full size-full wp-image-27313\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/mdf_montreal-21-scaled.jpg 2560w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/mdf_montreal-21-scaled-300x200.jpg 300w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/mdf_montreal-21-scaled-1024x683.jpg 1024w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/mdf_montreal-21-scaled-768x512.jpg 768w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/mdf_montreal-21-scaled-1536x1024.jpg 1536w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/mdf_montreal-21-scaled-2048x1366.jpg 2048w\" sizes=\"(max-width: 2560px) 100vw, 2560px\" \/><\/div>\t\t\t\t<div class=\"timeline-item__card-content\">\n\t\t\t\t\t<div class=\"timeline-item__meta\"><\/div><h3 class=\"timeline-item__card-title\">2026<br \/>\u00c9ducation locale et collaboration mondiale en recherche<\/h3><div class=\"timeline-item__card-desc\"><p>Quatre conf\u00e9rences r\u00e9gionales ont culmin\u00e9 \u00e0 Montr\u00e9al, au Canada, imm\u00e9diatement apr\u00e8s l\u2019IDMC-15, o\u00f9 la MDF et Dystrophie musculaire Canada ont collabor\u00e9 pour faciliter les \u00e9changes scientifiques internationaux avec une \u00e9ducation communautaire pratique au-del\u00e0 des fronti\u00e8res. La MDF a \u00e9galement approuv\u00e9 plus de 1 000 000 $ pour sept bourses, deux prix de d\u00e9but de carri\u00e8re et un projet hautement prioritaire, soutenant \u00e0 la fois la nouvelle recherche et les personnes qui la porteront. <\/p>\n<ul>\n<li><a href=\"https:\/\/myotonic.org\/events\/2026-regional-conference\/\">Conf\u00e9rences r\u00e9gionales MDF 2026<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/events\/2026-mdf-and-mdc-regional-conference-in-montreal-canada\/\">Conf\u00e9rence de Montr\u00e9al 2026<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/events\/idmc-15-international-myotonic-dystrophy-consortium\/\">IDMC-15<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/mdf-invests-myotonic-dystrophy-research-and-emerging-scientists\/\">Investissement dans la recherche 2026<\/a><\/li>\n<\/ul><\/div>\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t<div class=\"timeline-item__card-arrow\"><\/div>\n\t<\/div>\n\t<div class=\"timeline-item__point\"><div class=\"timeline-item__point-content timeline-item__point-content--icon\"><span class=\"jet-elements-icon\"><i aria-hidden=\"true\" class=\"mdf-custom-icon my-custom-icon-mdfrecord-button\"><\/i><\/span><\/div><\/div><div class=\"timeline-item__meta\"><div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"2560\" height=\"1707\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/mdf_montreal-21-scaled.jpg\" class=\"attachment-full size-full wp-image-27313\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/mdf_montreal-21-scaled.jpg 2560w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/mdf_montreal-21-scaled-300x200.jpg 300w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/mdf_montreal-21-scaled-1024x683.jpg 1024w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/mdf_montreal-21-scaled-768x512.jpg 768w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/mdf_montreal-21-scaled-1536x1024.jpg 1536w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/mdf_montreal-21-scaled-2048x1366.jpg 2048w\" sizes=\"(max-width: 2560px) 100vw, 2560px\" \/><\/div><\/div><\/div><div class=\"jet-timeline-item  elementor-repeater-item-5896881-35 jet-timeline-item--image-outside_after\">\n\t<div class=\"timeline-item__card\">\n\t\t<div class=\"timeline-item__card-inner\">\n\t\t\t\t<div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"981\" height=\"747\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/MDF-website-2026.png\" class=\"attachment-full size-full wp-image-27314\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/MDF-website-2026.png 981w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/MDF-website-2026-300x228.png 300w\" sizes=\"(max-width: 981px) 100vw, 981px\" \/><\/div>\t\t\t\t<div class=\"timeline-item__card-content\">\n\t\t\t\t\t<div class=\"timeline-item__meta\"><\/div><h3 class=\"timeline-item__card-title\">2026<br \/>Rendre les informations de confiance plus faciles \u00e0 trouver et \u00e0 utiliser<\/h3><div class=\"timeline-item__card-desc\"><p>Guid\u00e9e par les retours de la communaut\u00e9, la MDF a r\u00e9vis\u00e9 myotonic.org en 2026 pour rendre les informations, les programmes et les ressources de confiance plus faciles \u00e0 trouver et \u00e0 utiliser. Des parcours plus clairs aident d\u00e9sormais les personnes vivant avec la DM, les familles nouvellement diagnostiqu\u00e9es, les proches aidants, les professionnels de la sant\u00e9, les chercheurs et les sympathisants \u00e0 acc\u00e9der aux informations et au soutien les plus pertinents pour eux. <\/p>\n<ul>\n<li><a href=\"https:\/\/myotonic.org\/support\/\">Trouver du soutien<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/resources\/\">Ressources de la MDF<\/a><\/li>\n<li><a href=\"https:\/\/myotonic.org\/digital-academy\/\">Acad\u00e9mie num\u00e9rique de la MDF<\/a><\/li>\n<\/ul><\/div>\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t<div class=\"timeline-item__card-arrow\"><\/div>\n\t<\/div>\n\t<div class=\"timeline-item__point\"><div class=\"timeline-item__point-content timeline-item__point-content--icon\"><span class=\"jet-elements-icon\"><i aria-hidden=\"true\" class=\"mdf-custom-icon my-custom-icon-mdfrecord-button\"><\/i><\/span><\/div><\/div><div class=\"timeline-item__meta\"><div class=\"timeline-item__card-img\"><img loading=\"lazy\" decoding=\"async\" width=\"981\" height=\"747\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/MDF-website-2026.png\" class=\"attachment-full size-full wp-image-27314\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/MDF-website-2026.png 981w, https:\/\/myotonic.org\/wp-content\/uploads\/2026\/08\/MDF-website-2026-300x228.png 300w\" sizes=\"(max-width: 981px) 100vw, 981px\" \/><\/div><\/div><\/div><\/div><\/div><\/div>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-bf862ee e-flex e-con-boxed e-con e-parent\" data-id=\"bf862ee\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;jet_parallax_layout_list&quot;:[]}\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t<div class=\"elementor-element elementor-element-403140d e-con-full e-flex e-con e-child\" data-id=\"403140d\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;jet_parallax_layout_list&quot;:[]}\">\n\t\t\t\t<div class=\"elementor-element elementor-element-07650ec elementor-widget-tablet__width-initial elementor-widget elementor-widget-image\" data-id=\"07650ec\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img decoding=\"async\" src=\"https:\/\/mr66givry2-staging.onrocket.site\/wp-content\/uploads\/Spanish-Speaker-Group.jpg\" title=\"\" alt=\"\" loading=\"lazy\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-5b17199 e-con-full e-flex e-con e-child\" data-id=\"5b17199\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;jet_parallax_layout_list&quot;:[]}\">\n\t\t\t\t<div class=\"elementor-element elementor-element-b72c401 elementor-widget__width-initial elementor-widget elementor-widget-heading\" data-id=\"b72c401\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Notre histoire continue<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-6add548 elementor-widget-tablet__width-initial elementor-widget elementor-widget-text-editor\" data-id=\"6add548\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p>Depuis pr\u00e8s de deux d\u00e9cennies, la MDF a b\u00e2ti et g\u00e9r\u00e9 les relations, les connaissances, l\u2019infrastructure et le soutien public que requiert le progr\u00e8s dans une maladie rare. Ce qui est rest\u00e9 constant, c\u2019est notre responsabilit\u00e9 envers les personnes et les familles touch\u00e9es par la dystrophie myotonique et envers les donateurs, les b\u00e9n\u00e9voles, les chercheurs, les cliniciens et les partenaires qui rendent ce travail possible. <\/p><p>Chaque \u00e9tape a \u00e9largi ce que la communaut\u00e9 de la DM peut attendre : un soutien de confiance et des soins plus s\u00fbrs aujourd\u2019hui, une voix plus forte dans les d\u00e9cisions qui fa\u00e7onnent la recherche et les politiques, et une voie mieux pr\u00e9par\u00e9e vers des traitements et une gu\u00e9rison. La MDF poursuit ce travail avec une communaut\u00e9 mondiale de plus en plus connect\u00e9e et un domaine de recherche et de d\u00e9veloppement de m\u00e9dicaments en pleine croissance. <\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-8d67767 e-con-full e-flex e-con e-child\" data-id=\"8d67767\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;jet_parallax_layout_list&quot;:[]}\">\n\t\t\t\t<div class=\"elementor-element elementor-element-e2806dc elementor-widget elementor-widget-button\" data-id=\"e2806dc\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"button.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<div class=\"elementor-button-wrapper\">\n\t\t\t\t\t<a class=\"elementor-button elementor-button-link elementor-size-sm\" href=\"https:\/\/myotonic.org\/fr\/notre-impact\/\">\n\t\t\t\t\t\t<span class=\"elementor-button-content-wrapper\">\n\t\t\t\t\t\t\t\t\t<span class=\"elementor-button-text\">D\u00e9couvrez notre impact<\/span>\n\t\t\t\t\t<\/span>\n\t\t\t\t\t<\/a>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-d104401 elementor-widget elementor-widget-button\" data-id=\"d104401\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"button.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<div class=\"elementor-button-wrapper\">\n\t\t\t\t\t<a class=\"elementor-button elementor-button-link elementor-size-sm\" href=\"https:\/\/myotonic.org\/fr\/simpliquer\/\">\n\t\t\t\t\t\t<span class=\"elementor-button-content-wrapper\">\n\t\t\t\t\t\t\t\t\t<span class=\"elementor-button-text\">Impliquez-vous aupr\u00e8s de la MDF<\/span>\n\t\t\t\t\t<\/span>\n\t\t\t\t\t<\/a>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-33802a73 e-con-full e-flex e-con e-parent\" data-id=\"33802a73\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;jet_parallax_layout_list&quot;:[]}\">\n\t\t\t\t<div class=\"elementor-element elementor-element-11b2f721 elementor-widget elementor-widget-template\" data-id=\"11b2f721\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"template.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-template\">\n\t\t\t\t\t<div data-elementor-type=\"container\" data-elementor-id=\"21907\" class=\"elementor elementor-21907 elementor-9327 elementor-9327\" data-elementor-post-type=\"elementor_library\">\n\t\t\t\t<div class=\"elementor-element elementor-element-4da26a03 e-flex e-con-boxed e-con e-parent\" data-id=\"4da26a03\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;,&quot;jet_parallax_layout_list&quot;:[]}\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t\t\t<div class=\"elementor-element elementor-element-7c7106fb elementor-widget elementor-widget-heading\" data-id=\"7c7106fb\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Rejoignez-nous pour faire la diff\u00e9rence<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-1761fd93 e-con-full e-flex e-con e-child\" data-id=\"1761fd93\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;jet_parallax_layout_list&quot;:[]}\">\n\t\t<a class=\"elementor-element elementor-element-2ecd0645 e-con-full e-flex e-con e-child\" data-id=\"2ecd0645\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;,&quot;jet_parallax_layout_list&quot;:[]}\" href=\"https:\/\/myotonic.org\/get-involved\/advocate\/\">\n\t\t<div class=\"elementor-element elementor-element-52a30c89 e-con-full e-flex e-con e-child\" data-id=\"52a30c89\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;jet_parallax_layout_list&quot;:[]}\">\n\t\t\t\t<div class=\"elementor-element elementor-element-5360b2a6 elementor-widget elementor-widget-heading\" data-id=\"5360b2a6\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">D\u00e9fendre la cause<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-34f989c4 elementor-widget elementor-widget-heading\" data-id=\"34f989c4\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<p class=\"elementor-heading-title elementor-size-default\">Contribuez \u00e0 faire \u00e9voluer les politiques et \u00e0 acc\u00e9l\u00e9rer les progr\u00e8s pour les personnes vivant avec la DM.<\/p>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-29d67350 elementor-widget elementor-widget-image\" data-id=\"29d67350\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img loading=\"lazy\" decoding=\"async\" width=\"800\" height=\"534\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/advocate-img-1024x683.jpg\" class=\"attachment-large size-large wp-image-20991\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/advocate-img-1024x683.jpg 1024w, https:\/\/myotonic.org\/wp-content\/uploads\/advocate-img-300x200.jpg 300w, https:\/\/myotonic.org\/wp-content\/uploads\/advocate-img-768x512.jpg 768w, https:\/\/myotonic.org\/wp-content\/uploads\/advocate-img.jpg 1300w\" sizes=\"(max-width: 800px) 100vw, 800px\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/a>\n\t\t<a class=\"elementor-element elementor-element-2486fb71 e-con-full e-flex e-con e-child\" data-id=\"2486fb71\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;,&quot;jet_parallax_layout_list&quot;:[]}\" href=\"https:\/\/myotonic.org\/get-involved\/fundraise\/\">\n\t\t<div class=\"elementor-element elementor-element-396ded59 e-con-full e-flex e-con e-child\" data-id=\"396ded59\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;jet_parallax_layout_list&quot;:[]}\">\n\t\t\t\t<div class=\"elementor-element elementor-element-290f4cc elementor-widget elementor-widget-heading\" data-id=\"290f4cc\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Collecte de fonds<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-6f7d9f2e elementor-widget elementor-widget-heading\" data-id=\"6f7d9f2e\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<p class=\"elementor-heading-title elementor-size-default\">Mobilisez votre communaut\u00e9 pour soutenir des ressources essentielles et une recherche qui change des vies.<\/p>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-61b60249 elementor-widget elementor-widget-image\" data-id=\"61b60249\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img loading=\"lazy\" decoding=\"async\" width=\"800\" height=\"534\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/fundraise-img-1024x683.jpg\" class=\"attachment-large size-large wp-image-20992\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/fundraise-img-1024x683.jpg 1024w, https:\/\/myotonic.org\/wp-content\/uploads\/fundraise-img-300x200.jpg 300w, https:\/\/myotonic.org\/wp-content\/uploads\/fundraise-img-768x512.jpg 768w, https:\/\/myotonic.org\/wp-content\/uploads\/fundraise-img.jpg 1300w\" sizes=\"(max-width: 800px) 100vw, 800px\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/a>\n\t\t<a class=\"elementor-element elementor-element-4e985d8c e-con-full e-flex e-con e-child\" data-id=\"4e985d8c\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;,&quot;jet_parallax_layout_list&quot;:[]}\" href=\"https:\/\/myotonic.org\/get-involved\/volunteer\/\">\n\t\t<div class=\"elementor-element elementor-element-53a424cc e-con-full e-flex e-con e-child\" data-id=\"53a424cc\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;jet_parallax_layout_list&quot;:[]}\">\n\t\t\t\t<div class=\"elementor-element elementor-element-43553be6 elementor-widget elementor-widget-heading\" data-id=\"43553be6\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">B\u00e9n\u00e9volat<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-7d78d57c elementor-widget elementor-widget-heading\" data-id=\"7d78d57c\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<p class=\"elementor-heading-title elementor-size-default\">Rejoignez notre \u00e9quipe de b\u00e9n\u00e9voles qui apportent des liens et du soutien \u00e0 la communaut\u00e9.<\/p>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-5187d97a elementor-widget elementor-widget-image\" data-id=\"5187d97a\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img loading=\"lazy\" decoding=\"async\" width=\"800\" height=\"534\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/volenteer-img-1024x683.jpg\" class=\"attachment-large size-large wp-image-20993\" alt=\"\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/volenteer-img-1024x683.jpg 1024w, https:\/\/myotonic.org\/wp-content\/uploads\/volenteer-img-300x200.jpg 300w, https:\/\/myotonic.org\/wp-content\/uploads\/volenteer-img-768x512.jpg 768w, https:\/\/myotonic.org\/wp-content\/uploads\/volenteer-img.jpg 1300w\" sizes=\"(max-width: 800px) 100vw, 800px\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/a>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"<p>Histoire de la fondation Renforcer la communaut\u00e9 DM par le soutien, les soins, la d\u00e9fense des droits et la recherche qui nous rapprochent des traitements et d&rsquo;un rem\u00e8de. Faites d\u00e9filer pour en savoir plus Communaut\u00e9, prise en charge et gu\u00e9rison La Myotonic Dystrophy Foundation (MDF) a \u00e9t\u00e9 fond\u00e9e en Californie en 2007 en tant qu\u2019organisation [&hellip;]<\/p>\n","protected":false},"author":7,"featured_media":0,"parent":0,"menu_order":21,"comment_status":"closed","ping_status":"closed","template":"","meta":{"footnotes":""},"class_list":["post-27322","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/pages\/27322","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/users\/7"}],"replies":[{"embeddable":true,"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/comments?post=27322"}],"version-history":[{"count":0,"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/pages\/27322\/revisions"}],"wp:attachment":[{"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/media?parent=27322"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}