{"id":289,"date":"2026-07-07T19:35:27","date_gmt":"2026-07-07T17:35:27","guid":{"rendered":"https:\/\/corfoundation.org\/families\/"},"modified":"2026-09-07T16:05:07","modified_gmt":"2026-09-07T14:05:07","slug":"families","status":"publish","type":"page","link":"https:\/\/corfoundation.org\/en\/families\/","title":{"rendered":"Families"},"content":{"rendered":"<p>[et_pb_section fb_built=&#8221;1&#8243; fullwidth=&#8221;on&#8221; _builder_version=&#8221;4.27.7&#8243; _module_preset=&#8221;default&#8221; hover_enabled=&#8221;0&#8243; global_colors_info=&#8221;{}&#8221; sticky_enabled=&#8221;0&#8243;][et_pb_fullwidth_slider _builder_version=&#8221;4.27.7&#8243; _module_preset=&#8221;default&#8221; hover_enabled=&#8221;0&#8243; global_colors_info=&#8221;{}&#8221; sticky_enabled=&#8221;0&#8243; background_enable_image=&#8221;off&#8221; border_radii_image_last_edited=&#8221;on|desktop&#8221;][et_pb_slide heading=&#8221;How We Collaborate with Families&#8221; _builder_version=&#8221;4.27.7&#8243; _module_preset=&#8221;default&#8221; background_image=&#8221;https:\/\/corfoundation.org\/wp-content\/uploads\/2026\/07\/apoyo-familias-ACTL6B-oscuro-scaled.jpg&#8221; background_enable_image=&#8221;on&#8221; global_colors_info=&#8221;{}&#8221; sticky_transition=&#8221;on&#8221;]<\/p>\n<p>We unite affected families and science, because without both, it is impossible to find solutions to the challenges along the way. We work around the clock to solve the nBAF complex puzzle by bringing science and families together to move forward in the same direction<\/p>\n<p>[\/et_pb_slide][\/et_pb_fullwidth_slider][\/et_pb_section][et_pb_section fb_built=&#8221;1&#8243; _builder_version=&#8221;4.27.7&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_row _builder_version=&#8221;4.27.7&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.27.7&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.27.7&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2 style=\"text-align: center;\">We Have a Clear Goal<\/h2>\n<p style=\"text-align: center;\">We involve families in every scientific advancement to improve the quality of life for individuals affected by nBAF complex mutations and their loved ones.<\/p>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=&#8221;1&#8243; _builder_version=&#8221;4.27.7&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_row _builder_version=&#8221;4.27.7&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.27.7&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.27.7&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>How We Do It<\/h2>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=&#8221;1_2,1_2&#8243; _builder_version=&#8221;4.27.7&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;1_2&#8243; _builder_version=&#8221;4.27.7&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.27.7&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h3>I. Promotion of Targeted Biomedical Research:<\/h3>\n<p>Direct funding for researchers and institutions focused on deciphering molecular mechanisms (such as dysfunctions in protein subdomains that interact with actin) and developing advanced therapies for ACTL6B and associated pathologies.<\/p>\n<p>[\/et_pb_text][\/et_pb_column][et_pb_column type=&#8221;1_2&#8243; _builder_version=&#8221;4.27.7&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.27.7&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h3>II. Access to Therapies and Comprehensive Care:<\/h3>\n<p>Addressing unmet patient needs by facilitating healthcare interventions, essential physical and cognitive rehabilitation therapies to alleviate motor and neurodevelopmental symptoms, and providing ongoing support to families.<\/p>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=&#8221;1_2,1_2&#8243; _builder_version=&#8221;4.27.7&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;1_2&#8243; _builder_version=&#8221;4.27.7&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.27.7&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h3> III. Innovation and Digital Health:Innovaci\u00f3n y Salud Digital:<\/h3>\n<p>Developing technological solutions to optimize clinical monitoring for these complex patients, connecting the global BAFopathy community, and democratizing access to medical information.<\/p>\n<p>[\/et_pb_text][\/et_pb_column][et_pb_column type=&#8221;1_2&#8243; _builder_version=&#8221;4.27.7&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.27.7&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h3>IV. Awareness and Strategic Alliances:<\/h3>\n<p>Creating international consortia with hospitals, universities, and the biopharmaceutical sector to maximize the impact of ACTL6B research.<\/p>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=&#8221;1&#8243; _builder_version=&#8221;4.27.7&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_row _builder_version=&#8221;4.27.7&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.27.7&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.27.7&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>Join the Scientific Evolution Toward Treatment<\/h2>\n<p style=\"text-align: center;\">We need families to participate so we can formally unite our community and, through their collaboration, advance the comprehensive scientific and clinical program that will allow us, in just a few years, to deploy a viable therapy with the potential to cure the first cases.<\/p>\n<p>[\/et_pb_text][et_pb_button button_url=&#8221;@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF9saW5rX3VybF9wYWdlIiwic2V0dGluZ3MiOnsicG9zdF9pZCI6IjE3IiwiZW5hYmxlX2h0bWwiOiJvZmYifX0=@&#8221; button_text=&#8221;Get more information&#8221; button_alignment=&#8221;center&#8221; _builder_version=&#8221;4.27.7&#8243; _dynamic_attributes=&#8221;button_url&#8221; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_button][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":"<p>We unite affected families and science, because without both, it is impossible to find solutions to the challenges along the way. We work around the clock to solve the nBAF complex puzzle by bringing science and families together to move forward in the same directionWe Have a Clear Goal We involve families in every scientific [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"","_et_gb_content_width":"","inline_featured_image":false,"footnotes":""},"class_list":["post-289","page","type-page","status-publish","hentry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Families - COR Foundation<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/corfoundation.org\/en\/families\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Families - COR Foundation\" \/>\n<meta property=\"og:description\" content=\"We unite affected families and science, because without both, it is impossible to find solutions to the challenges along the way. 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