{"id":6,"date":"2025-04-28T16:31:33","date_gmt":"2025-04-28T16:31:33","guid":{"rendered":"https:\/\/kidswithspg3a.com\/?page_id=6"},"modified":"2025-05-15T14:49:36","modified_gmt":"2025-05-15T14:49:36","slug":"homepage","status":"publish","type":"page","link":"https:\/\/kidswithspg3a.com\/fr\/","title":{"rendered":"Page d&rsquo;accueil"},"content":{"rendered":"<div class=\"wp-block-cover alignfull has-parallax\" style=\"border-top-style:none;border-top-width:0px;border-right-style:none;border-right-width:0px;border-bottom-color:var(--wp--preset--color--palette-color-2);border-bottom-width:5px;border-left-style:none;border-left-width:0px;margin-top:0;margin-bottom:0;min-height:100vh;aspect-ratio:unset;\"><div class=\"wp-block-cover__image-background wp-image-27 size-large has-parallax\" style=\"background-position:50% 50%;background-image:url(https:\/\/kidswithspg3a.com\/wp-content\/uploads\/2025\/04\/635b651826c8978857d3dd25_Rectangle-72-min-1024x661.png)\"><\/div><span aria-hidden=\"true\" class=\"wp-block-cover__background has-background-dim-10 has-background-dim\" style=\"background-color:#5f80b6\"><\/span><div class=\"wp-block-cover__inner-container is-layout-constrained wp-block-cover-is-layout-constrained\">\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-28f84493 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\"><\/div>\n\n\n\n<div class=\"wp-block-column has-palette-color-8-color has-text-color has-background has-link-color wp-elements-9a5d80c26406ba8eec49fed56e187138 is-layout-flow wp-block-column-is-layout-flow\" style=\"background-color:#302d30b8;padding-top:var(--wp--preset--spacing--60);padding-right:var(--wp--preset--spacing--60);padding-bottom:var(--wp--preset--spacing--60);padding-left:var(--wp--preset--spacing--60)\">\n<div class=\"wp-block-group is-content-justification-left is-layout-constrained wp-container-core-group-is-layout-12dd3699 wp-block-group-is-layout-constrained\">\n<figure class=\"wp-block-image size-full is-resized\"><img decoding=\"async\" src=\"https:\/\/kidswithspg3a.com\/wp-content\/uploads\/2025\/04\/kids-with-spg3a-white-text.svg\" alt=\"\" class=\"wp-image-31\" style=\"width:300px\" title=\"\"><\/figure>\n<\/div>\n\n\n\n<p>Notre mission est de connecter les enfants atteints de SPG3A avec :<\/p>\n\n\n\n<ul class=\"wp-block-list is-style-icon ghostkit-custom-2sGPhk\">\n<li>les uns avec les autres, pour partager des exp\u00e9riences de vie, de th\u00e9rapie et de traitement<\/li>\n\n\n\n<li>des chercheurs, pour aider dans leurs efforts pour trouver un rem\u00e8de<\/li>\n<\/ul>\n\n\n\n<p>Peu importe o\u00f9 vous \u00eates dans le monde, <strong>veuillez rejoindre notre communaut\u00e9 <\/strong><strong>SPG3A<\/strong> pour suivre les derni\u00e8res recherches.<br>\u200d<br>Quand il s&rsquo;agit de trouver un rem\u00e8de, il y a de la force dans le nombre !<\/p>\n\n\n\n<div class=\"wp-block-buttons is-layout-flex wp-block-buttons-is-layout-flex\">\n<div class=\"wp-block-button is-style-outline is-style-outline--7\"><a class=\"wp-block-button__link has-palette-color-8-color has-text-color has-link-color has-border-color has-palette-color-8-border-color wp-element-button\" href=\"https:\/\/kids-with-spg3a.mn.co\/\" target=\"_blank\" rel=\"noreferrer noopener\">Rejoignez notre communaut\u00e9<\/a><\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div><\/div>\n\n\n\n<div class=\"wp-block-columns alignfull is-layout-flex wp-container-core-columns-is-layout-f0342b05 wp-block-columns-is-layout-flex\" style=\"margin-top:0;margin-bottom:0\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"987\" src=\"https:\/\/kidswithspg3a.com\/wp-content\/uploads\/2025\/04\/637f07ee5b9b5e8965ba5c63_2-1024x987.jpg\" alt=\"\" class=\"wp-image-22\" title=\"\" srcset=\"https:\/\/kidswithspg3a.com\/wp-content\/uploads\/2025\/04\/637f07ee5b9b5e8965ba5c63_2-1024x987.jpg 1024w, https:\/\/kidswithspg3a.com\/wp-content\/uploads\/2025\/04\/637f07ee5b9b5e8965ba5c63_2-300x289.jpg 300w, https:\/\/kidswithspg3a.com\/wp-content\/uploads\/2025\/04\/637f07ee5b9b5e8965ba5c63_2-768x740.jpg 768w, https:\/\/kidswithspg3a.com\/wp-content\/uploads\/2025\/04\/637f07ee5b9b5e8965ba5c63_2-1536x1480.jpg 1536w, https:\/\/kidswithspg3a.com\/wp-content\/uploads\/2025\/04\/637f07ee5b9b5e8965ba5c63_2-2048x1973.jpg 2048w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"987\" src=\"https:\/\/kidswithspg3a.com\/wp-content\/uploads\/2025\/04\/637f062e4caf383bfc0d53b1_3-1024x987.jpg\" alt=\"\" class=\"wp-image-28\" title=\"\" srcset=\"https:\/\/kidswithspg3a.com\/wp-content\/uploads\/2025\/04\/637f062e4caf383bfc0d53b1_3-1024x987.jpg 1024w, https:\/\/kidswithspg3a.com\/wp-content\/uploads\/2025\/04\/637f062e4caf383bfc0d53b1_3-300x289.jpg 300w, https:\/\/kidswithspg3a.com\/wp-content\/uploads\/2025\/04\/637f062e4caf383bfc0d53b1_3-768x740.jpg 768w, https:\/\/kidswithspg3a.com\/wp-content\/uploads\/2025\/04\/637f062e4caf383bfc0d53b1_3-1536x1480.jpg 1536w, https:\/\/kidswithspg3a.com\/wp-content\/uploads\/2025\/04\/637f062e4caf383bfc0d53b1_3-2048x1973.jpg 2048w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n<\/div>\n<\/div>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-55a13620 wp-block-columns-is-layout-flex\" style=\"margin-top:-200px;margin-bottom:-100px\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:10%\"><\/div>\n\n\n\n<div class=\"wp-block-column zindex has-palette-color-9-background-color has-background is-layout-flow wp-block-column-is-layout-flow\" style=\"padding-top:var(--wp--preset--spacing--60);padding-right:var(--wp--preset--spacing--60);padding-bottom:var(--wp--preset--spacing--60);padding-left:var(--wp--preset--spacing--60);box-shadow:var(--wp--preset--shadow--crisp);flex-basis:80%\" id=\"about\">\n<h2 class=\"wp-block-heading has-text-align-center\" id=\"qui-sommes-nous\">QUI SOMMES-NOUS ?<\/h2>\n\n\n\n<p class=\"has-text-align-center\">Enfants avec SPG3A a \u00e9t\u00e9 cr\u00e9\u00e9 par deux familles ayant de jeunes enfants atteints de parapl\u00e9gie spastique de type 3A.<\/p>\n\n\n\n<p class=\"has-text-align-center\">Emily a \u00e9t\u00e9 diagnostiqu\u00e9e avec SPG3A en 2020 \u00e0 l&rsquo;\u00e2ge de 18 mois.<br>Carter a \u00e9t\u00e9 diagnostiqu\u00e9 avec une paralysie c\u00e9r\u00e9brale peu apr\u00e8s avoir manqu\u00e9 des \u00e9tapes motrices du d\u00e9veloppement \u00e0 l&rsquo;\u00e2ge de six mois. Son diagnostic a \u00e9t\u00e9 r\u00e9vis\u00e9 \u00e0 SPG3A \u00e0 l&rsquo;\u00e2ge de 5 ans, apr\u00e8s des tests g\u00e9n\u00e9tiques \u00e0 l&rsquo;H\u00f4pital pour enfants de Boston.<br>Carter et Emily pr\u00e9sentent tous deux des variantes \u00ab de novo \u00bb, non h\u00e9rit\u00e9es de leurs parents, et leurs sympt\u00f4mes sont complexes, affectant non seulement leurs jambes mais aussi leurs membres sup\u00e9rieurs et leurs muscles oraux.<\/p>\n\n\n\n<p class=\"has-text-align-center\">Le grand-p\u00e8re de Carter, <a href=\"https:\/\/en.wikipedia.org\/wiki\/Joseph_Avellone\" target=\"_blank\" rel=\"noreferrer noopener\">Joseph Avellone, MD<\/a>, poss\u00e8de une vaste exp\u00e9rience dans l&rsquo;industrie de la sant\u00e9 et de la biom\u00e9decine.<br>Il a fond\u00e9 la Fondation Carter pour la recherche neurologique afin de financer des recherches sur<br>les causes et le traitement des maladies neurologiques rares chez les enfants. <a href=\"https:\/\/www.massgeneral.org\/doctors\/21073\/craig-blackstone\" target=\"_blank\" rel=\"noreferrer noopener\">Dr Craig Blackstone<\/a>, chef des troubles du mouvement, d\u00e9partement de neurologie, Massachusetts General Hospital, est le conseiller scientifique principal de la Fondation et un scientifique de recherche \u00e9minent avec un focus \u00e0 long terme sur les parapl\u00e9gies spastiques h\u00e9r\u00e9ditaires.<\/p>\n\n\n\n<p class=\"has-text-align-center\">Les deux familles travaillent en \u00e9troite collaboration avec des chercheurs et partageront les mises \u00e0 jour de la recherche avec d&rsquo;autres familles sur la <a href=\"https:\/\/kids-with-spg3a.mn.co\/\" target=\"_blank\" rel=\"noreferrer noopener\">Plateforme communautaire Enfants avec SPG3A<\/a>.<\/p>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:10%\"><\/div>\n<\/div>\n\n\n\n<div class=\"wp-block-cover alignfull has-parallax\" style=\"margin-top:0;margin-bottom:0;padding-top:var(--wp--preset--spacing--80);padding-bottom:var(--wp--preset--spacing--80)\"><div class=\"wp-block-cover__image-background wp-image-25 size-large has-parallax\" style=\"background-position:50% 50%;background-image:url(https:\/\/kidswithspg3a.com\/wp-content\/uploads\/2025\/04\/635b6515ae143150e06c4365_Rectangle-10-min-1024x693.png)\"><\/div><span aria-hidden=\"true\" class=\"wp-block-cover__background has-background-dim-20 has-background-dim\" style=\"background-color:#0d527d\"><\/span><div class=\"wp-block-cover__inner-container is-layout-constrained wp-block-cover-is-layout-constrained\">\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-4c1dd492 wp-block-columns-is-layout-flex\" style=\"margin-top:var(--wp--preset--spacing--80);margin-bottom:var(--wp--preset--spacing--80)\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:15%\"><\/div>\n\n\n\n<div class=\"wp-block-column has-palette-color-8-color has-text-color has-link-color wp-elements-b24660e8e2ab68f3f70184b94764cc45 is-layout-flow wp-block-column-is-layout-flow\" style=\"padding-top:var(--wp--preset--spacing--60);padding-right:var(--wp--preset--spacing--60);padding-bottom:var(--wp--preset--spacing--60);padding-left:var(--wp--preset--spacing--60)\">\n<div class=\"wp-block-group is-content-justification-left is-layout-constrained wp-container-core-group-is-layout-12dd3699 wp-block-group-is-layout-constrained\">\n<h2 class=\"wp-block-heading has-text-align-center\" id=\"qu-est-ce-que-le-spg3a\">QU&rsquo;EST-CE QUE LE SPG3A ?<\/h2>\n<\/div>\n\n\n\n<p class=\"has-text-align-center\">Le SPG3A est le type le plus courant de HSP, ou parapl\u00e9gie spastique h\u00e9r\u00e9ditaire, chez les enfants.<br>Le sympt\u00f4me principal du HSP est la difficult\u00e9 \u00e0 marcher en raison de muscles des jambes tendus (spastiques) et faibles.<br>Certains patients pr\u00e9sentent des sympt\u00f4mes plus complexes affectant d&rsquo;autres parties du corps.<br>La gravit\u00e9 des sympt\u00f4mes s&rsquo;aggrave g\u00e9n\u00e9ralement avec le temps.<\/p>\n\n\n\n<div class=\"wp-block-buttons is-content-justification-center is-layout-flex wp-container-core-buttons-is-layout-a89b3969 wp-block-buttons-is-layout-flex\">\n<div class=\"wp-block-button is-style-fill\"><a class=\"wp-block-button__link has-text-align-center wp-element-button\" href=\"https:\/\/kidswithspg3a.com\/about-spg3a\/\">En savoir plus<\/a><\/div>\n<\/div>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:15%\"><\/div>\n<\/div>\n<\/div><\/div>\n\n\n\n<div class=\"wp-block-cover alignfull\" style=\"margin-top:0;margin-bottom:0\"><span aria-hidden=\"true\" class=\"wp-block-cover__background has-palette-color-10-background-color has-background-dim-100 has-background-dim\"><\/span><div class=\"wp-block-cover__inner-container is-layout-constrained wp-block-cover-is-layout-constrained\">\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-28f84493 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column has-palette-color-8-color has-text-color has-link-color wp-elements-cefb0965a7bb6a7c828eeb1f1b62ee5e is-layout-flow wp-block-column-is-layout-flow\" style=\"padding-top:var(--wp--preset--spacing--60);padding-right:var(--wp--preset--spacing--60);padding-bottom:var(--wp--preset--spacing--60);padding-left:var(--wp--preset--spacing--60)\">\n<h2 class=\"wp-block-heading has-palette-color-8-color has-text-color has-link-color wp-elements-fe2fb4161a3139cf81f1460786966435\" id=\"recherche\">RECHERCHE<\/h2>\n\n\n\n<p>La Fondation Carter a \u00e9tabli un programme de d\u00e9couverte de m\u00e9dicaments et de th\u00e9rapie g\u00e9nique pour le SPG3A au cours de sa premi\u00e8re ann\u00e9e. Cliquez sur le lien ci-dessous pour en savoir plus.<\/p>\n\n\n\n<p>Nous encourageons tout le monde \u00e0 rejoindre l&rsquo;<a href=\"https:\/\/clinicaltrials.gov\/ct2\/show\/NCT04712812?cond=NCT04712812&amp;draw=2&amp;rank=1\" target=\"_blank\" rel=\"noreferrer noopener\"><strong>\u00c9tude sur l&rsquo;histoire naturelle de la parapl\u00e9gie spastique h\u00e9r\u00e9ditaire \u00e0 d\u00e9but pr\u00e9coce (HSP)<\/strong><\/a>, qui sera le point de d\u00e9part de tout futur essai clinique. Veuillez contacter directement la coordinatrice de recherche, Amy Tam, \u00e0 l&rsquo;adresse amy.tam@childrens.harvard.edu pour participer.<\/p>\n\n\n\n<div class=\"wp-block-group has-border-color has-palette-color-4-border-color is-layout-constrained wp-container-core-group-is-layout-f611be13 wp-block-group-is-layout-constrained\" style=\"border-width:1px;padding-top:var(--wp--preset--spacing--50);padding-right:var(--wp--preset--spacing--50);padding-bottom:var(--wp--preset--spacing--50);padding-left:var(--wp--preset--spacing--50)\">\n<p class=\"has-text-align-center\">Pour en savoir plus sur le programme de recherche de la Fondation Carter pour un rem\u00e8de contre le SPG3A et l&rsquo;\u00e9tude sur l&rsquo;histoire naturelle du HSP :<\/p>\n\n\n\n<div class=\"wp-block-buttons is-content-justification-center is-layout-flex wp-container-core-buttons-is-layout-a89b3969 wp-block-buttons-is-layout-flex\">\n<div class=\"wp-block-button\"><a class=\"wp-block-button__link wp-element-button\" href=\"https:\/\/www.kidswithspg3a.com\/research\" target=\"_blank\" rel=\"noreferrer noopener\">Cliquez ici<\/a><\/div>\n<\/div>\n<\/div>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-vertically-aligned-center is-layout-flow wp-block-column-is-layout-flow\">\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"780\" src=\"https:\/\/kidswithspg3a.com\/wp-content\/uploads\/2025\/04\/635b6519a5c3b6febb6042b6_Rectangle-90-min-1024x780.png\" alt=\"\" class=\"wp-image-24\" title=\"\" srcset=\"https:\/\/kidswithspg3a.com\/wp-content\/uploads\/2025\/04\/635b6519a5c3b6febb6042b6_Rectangle-90-min-1024x780.png 1024w, https:\/\/kidswithspg3a.com\/wp-content\/uploads\/2025\/04\/635b6519a5c3b6febb6042b6_Rectangle-90-min-300x229.png 300w, https:\/\/kidswithspg3a.com\/wp-content\/uploads\/2025\/04\/635b6519a5c3b6febb6042b6_Rectangle-90-min-768x585.png 768w, https:\/\/kidswithspg3a.com\/wp-content\/uploads\/2025\/04\/635b6519a5c3b6febb6042b6_Rectangle-90-min.png 1148w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n<\/div>\n<\/div>\n<\/div><\/div>\n\n\n\n<div class=\"wp-block-group alignfull has-palette-color-8-color has-palette-color-3-background-color has-text-color has-background has-link-color wp-elements-3e302c70939a5296259aa6720206b308 is-layout-constrained wp-block-group-is-layout-constrained\" style=\"padding-top:var(--wp--preset--spacing--80);padding-bottom:var(--wp--preset--spacing--80)\">\n<h1 class=\"wp-block-heading has-text-align-center\" id=\"contactez-nous\">CONTACTEZ-NOUS<\/h1>\n\n\n\n<p class=\"has-text-align-center\">Veuillez rejoindre notre <a href=\"https:\/\/kids-with-spg3a.mn.co\/\" target=\"_blank\" rel=\"noreferrer noopener\">plateforme communautaire<\/a> afin de rester en contact avec d&rsquo;autres familles touch\u00e9es par le SPG3A et de rester inform\u00e9 des derni\u00e8res recherches.<\/p>\n\n\n\n<div class=\"wp-block-buttons is-content-justification-center is-layout-flex wp-container-core-buttons-is-layout-a89b3969 wp-block-buttons-is-layout-flex\">\n<div class=\"wp-block-button\"><a class=\"wp-block-button__link has-text-align-center wp-element-button\" href=\"https:\/\/kids-with-spg3a.mn.co\/\" target=\"_blank\" rel=\"noreferrer noopener\">Rejoignez notre communaut\u00e9<\/a><\/div>\n<\/div>\n\n\n\n<p class=\"has-text-align-center\">Si vous avez des questions ou des suggestions, veuillez nous envoyer un courriel \u00e0<br><a href=\"mailto:info@kidswithspg3a.com\">info@kidswithspg3a.com<\/a><\/p>\n<\/div>","protected":false},"excerpt":{"rendered":"<p>QUI SOMMES-NOUS ? Enfants avec SPG3A a \u00e9t\u00e9 cr\u00e9\u00e9 par deux familles ayant de jeunes enfants atteints de parapl\u00e9gie spastique de type 3A. Emily a \u00e9t\u00e9 diagnostiqu\u00e9e avec SPG3A en 2020 \u00e0 l&rsquo;\u00e2ge de 18 mois.Carter a \u00e9t\u00e9 diagnostiqu\u00e9 avec une paralysie c\u00e9r\u00e9brale peu apr\u00e8s avoir manqu\u00e9 des \u00e9tapes motrices du d\u00e9veloppement \u00e0 l&rsquo;\u00e2ge de [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"ghostkit_customizer_options":"","ghostkit_custom_css":"","ghostkit_custom_js_head":"","ghostkit_custom_js_foot":"","ghostkit_typography":"","footnotes":""},"class_list":["post-6","page","type-page","status-publish","hentry"],"blocksy_meta":{"has_hero_section":"disabled","styles_descriptor":{"styles":{"desktop":"","tablet":"","mobile":""},"google_fonts":[],"version":6},"content_style_source":"inherit","vertical_spacing_source":"custom","content_area_spacing":"none","background":{"background_type":"color","background_pattern":"type-1","background_image":{"attachment_id":null,"x":0,"y":0},"gradient":"linear-gradient(135deg,rgba(6,147,227,1) 0%,rgb(155,81,224) 100%)","background_repeat":"repeat","background_size":"auto","background_attachment":"scroll","patternColor":{"default":{"color":"#e5e7ea"}},"overlayColor":{"default":{"color":"CT_CSS_SKIP_RULE"}},"backgroundColor":{"default":{"color":"CT_CSS_SKIP_RULE"}}}},"_links":{"self":[{"href":"https:\/\/kidswithspg3a.com\/fr\/wp-json\/wp\/v2\/pages\/6","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/kidswithspg3a.com\/fr\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/kidswithspg3a.com\/fr\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/kidswithspg3a.com\/fr\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/kidswithspg3a.com\/fr\/wp-json\/wp\/v2\/comments?post=6"}],"version-history":[{"count":90,"href":"https:\/\/kidswithspg3a.com\/fr\/wp-json\/wp\/v2\/pages\/6\/revisions"}],"predecessor-version":[{"id":329,"href":"https:\/\/kidswithspg3a.com\/fr\/wp-json\/wp\/v2\/pages\/6\/revisions\/329"}],"wp:attachment":[{"href":"https:\/\/kidswithspg3a.com\/fr\/wp-json\/wp\/v2\/media?parent=6"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}