{"id":24441,"date":"2020-11-16T13:18:18","date_gmt":"2020-11-16T12:18:18","guid":{"rendered":"https:\/\/test.impulsate.org\/?p=24441"},"modified":"2020-11-16T13:18:18","modified_gmt":"2020-11-16T12:18:18","slug":"research-in-rare-diseases-needs-a-boost","status":"publish","type":"post","link":"https:\/\/test.impulsate.org\/en\/research-in-rare-diseases-needs-a-boost\/","title":{"rendered":"Research in rare diseases needs a boost"},"content":{"rendered":"<p><span class=\"VIiyi\" lang=\"en\"><span class=\"JLqJ4b\" data-language-for-alternatives=\"en\" data-language-to-translate-into=\"es\" data-phrase-index=\"0\">After a week of campaign with activities of scientific dissemination and inclusive leisure, today 15th, World Day of Neuromuscular Diseases, the 24 families in Spain affected by congenital muscular dystrophy due to merosin deficiency we launched the video: &#8220;Your impulse makes us fly.&#8221; <\/span><\/span><\/p>\n<p><span class=\"VIiyi\" lang=\"en\"><span class=\"JLqJ4b\" data-language-for-alternatives=\"en\" data-language-to-translate-into=\"es\" data-phrase-index=\"0\">We have made the video with the dreams of boys and girls who suffer from the disease: we see Mikele in a rocket, J\u00falia among elephants, Daniel on top of a fire engine, Carlos acting as a cook or Paula driving\u2026 Dreams made out of photo collage following the initiative of the international artist Eugenia Loli, to recontextualize characters in new settings. <\/span><\/span><\/p>\n<p><span class=\"VIiyi\" lang=\"en\"><span class=\"JLqJ4b\" data-language-for-alternatives=\"en\" data-language-to-translate-into=\"es\" data-phrase-index=\"0\">The goal is to make known a minority disease that affects the muscles but not the cognitive capacity, thus, the majority of children who suffer from it cannot walk or eat alone although their intellectual development is not affected. As it is a disease that affects 1 in 100,000 children, very few resources are devoted to biomedical research and it is only private involvement that can help improve the quality of life of these people. <\/span><\/span><\/p>\n<p><span class=\"VIiyi\" lang=\"en\"><span class=\"JLqJ4b\" data-language-for-alternatives=\"en\" data-language-to-translate-into=\"es\" data-phrase-index=\"0\">The Covid19 pandemic greatly aggravates the situation of these families. On the one hand, because the affected people are at high risk and must reduce social contact, and therefore also support for families to coexist with the situation (school, leisure, relatives, specialists&#8230;). On the other hand, because they have had to stop all the solidarity initiatives to raise funds that help them finance the two open lines of research. <\/span><\/span><\/p>\n<p><span class=\"VIiyi\" lang=\"en\"><span class=\"JLqJ4b\" data-language-for-alternatives=\"en\" data-language-to-translate-into=\"es\" data-phrase-index=\"0\"><strong>Share the video&#8230; we are not 24, we are thousands!<\/strong> <\/span><\/span><\/p>\n<p><span class=\"VIiyi\" lang=\"en\"><span class=\"JLqJ4b\" data-language-for-alternatives=\"en\" data-language-to-translate-into=\"es\" data-phrase-index=\"0\">SPANISH VERSION<\/span><\/span><\/p>\n<p><iframe loading=\"lazy\" title=\"Tu impulso nos hace volar - S\u00famate, por la investigaci\u00f3n!\" width=\"500\" height=\"375\" src=\"https:\/\/www.youtube.com\/embed\/2z_o1yc9_kw?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe><\/p>\n<p>BASCQUE VERSION<\/p>\n<p><iframe loading=\"lazy\" title=\"Beraiek gure bultzadak hegan egiten lagunduko diela amesten dute\" width=\"500\" height=\"375\" src=\"https:\/\/www.youtube.com\/embed\/mPjUX7lLVM0?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe><\/p>\n<p>CATALAN VERSION<\/p>\n<p><iframe loading=\"lazy\" title=\"El teu impuls ens fa volar - Suma-t&#039;hi per la investigaci\u00f3\" width=\"500\" height=\"375\" src=\"https:\/\/www.youtube.com\/embed\/q8z8ywrGjv4?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe><\/p>\n<p>GALICIAN VERSION<\/p>\n<p><iframe loading=\"lazy\" title=\"O teu impulso faraos voar\" width=\"500\" height=\"375\" src=\"https:\/\/www.youtube.com\/embed\/QhzDgPzZg5c?start=13&#038;feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe><\/p>\n<p>&nbsp;<\/p>\n<p><span class=\"VIiyi\" lang=\"en\"><strong><span class=\"JLqJ4b ChMk0b\" data-language-for-alternatives=\"en\" data-language-to-translate-into=\"es\" data-phrase-index=\"0\">Research projects<\/span><\/strong> <\/span><\/p>\n<p><span class=\"VIiyi\" lang=\"en\"><span class=\"JLqJ4b ChMk0b\" data-language-for-alternatives=\"en\" data-language-to-translate-into=\"es\" data-phrase-index=\"2\">Currently, the association has accompanied two research projects, thanks to the guidance of the Scientific Committee of the ImpulsaT association and the support of companies, institutions and private donations.<\/span> <\/span><\/p>\n<ul>\n<li><span class=\"VIiyi\" lang=\"en\"><span class=\"JLqJ4b ChMk0b\" data-language-for-alternatives=\"en\" data-language-to-translate-into=\"es\" data-phrase-index=\"4\">Development of a new pre-clinical gene therapy strategy for the treatment of congenital muscular dystrophy 1a.<\/span> <\/span><\/li>\n<li><span class=\"VIiyi\" lang=\"en\"><span class=\"JLqJ4b ChMk0b\" data-language-for-alternatives=\"en\" data-language-to-translate-into=\"es\" data-phrase-index=\"6\">Uni-large: development of a new gene therapy technology to treat congenital muscular dystrophy type 1a<\/span>.<\/span><\/li>\n<\/ul>\n<p><a href=\"https:\/\/test.impulsate.org\/en\/projects\/\"><span class=\"VIiyi\" lang=\"en\"><span class=\"JLqJ4b ChMk0b\" data-language-for-alternatives=\"en\" data-language-to-translate-into=\"es\" data-phrase-index=\"8\">Know in detail the financed projects.<\/span><\/span><\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>After a week of campaign with activities of scientific dissemination and inclusive leisure, today 15th, World Day of Neuromuscular Diseases, the 24 families in Spain affected by congenital muscular dystrophy due to merosin deficiency we launched the video: &#8220;Your impulse makes us fly.&#8221; We have made the video with the dreams of boys and girls [&hellip;]<\/p>\n","protected":false},"author":6,"featured_media":24398,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"video","meta":{"_acf_changed":false,"give_campaign_id":0,"footnotes":""},"categories":[21],"tags":[],"class_list":["post-24441","post","type-post","status-publish","format-video","has-post-thumbnail","hentry","category-uncategorized","post_format-post-format-video"],"acf":[],"_links":{"self":[{"href":"https:\/\/test.impulsate.org\/en\/wp-json\/wp\/v2\/posts\/24441","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/test.impulsate.org\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/test.impulsate.org\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/test.impulsate.org\/en\/wp-json\/wp\/v2\/users\/6"}],"replies":[{"embeddable":true,"href":"https:\/\/test.impulsate.org\/en\/wp-json\/wp\/v2\/comments?post=24441"}],"version-history":[{"count":1,"href":"https:\/\/test.impulsate.org\/en\/wp-json\/wp\/v2\/posts\/24441\/revisions"}],"predecessor-version":[{"id":24442,"href":"https:\/\/test.impulsate.org\/en\/wp-json\/wp\/v2\/posts\/24441\/revisions\/24442"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/test.impulsate.org\/en\/wp-json\/wp\/v2\/media\/24398"}],"wp:attachment":[{"href":"https:\/\/test.impulsate.org\/en\/wp-json\/wp\/v2\/media?parent=24441"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/test.impulsate.org\/en\/wp-json\/wp\/v2\/categories?post=24441"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/test.impulsate.org\/en\/wp-json\/wp\/v2\/tags?post=24441"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}