{"id":182755,"date":"2026-02-27T09:52:29","date_gmt":"2026-02-27T09:52:29","guid":{"rendered":"https:\/\/www.newsbeep.com\/us-tx\/182755\/"},"modified":"2026-02-27T09:52:29","modified_gmt":"2026-02-27T09:52:29","slug":"el-paso-mother-visits-washington-to-highlight-rare-disease","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/us-tx\/182755\/","title":{"rendered":"El Paso mother visits Washington to highlight rare disease"},"content":{"rendered":"<p class=\"mb-4 text-lg md:leading-8 break-words\">EL PASO, Texas (<a href=\"https:\/\/www.ktsm.com\/\" rel=\"nofollow noopener\" target=\"_blank\" data-ylk=\"slk:KTSM;elm:context_link;itc:0;sec:content-canvas\" class=\"link \">KTSM<\/a>) \u2014 An El Paso mother was in Washington, D.C. to attend a Senate hearing on Thursday, Feb. 26 and to raise awareness about a rare disease that is afflicting her teenage son and the challenge\u2019s they face.<\/p>\n<p class=\"mb-4 text-lg md:leading-8 break-words\">Angelina Olivera said she attended a Senate hearing and talked to senators about Duchenne Muscular Dystrophy.<\/p>\n<p class=\"mb-4 text-lg md:leading-8 break-words\">She said her 14-year-old son Ryu has the disease and she saw two of her brothers die from it earlier.<\/p>\n<p class=\"mb-4 text-lg md:leading-8 break-words\">She issued the following statement saying she feels more optimistic and that attending the hearing was empowering.<\/p>\n<p class=\"mb-4 text-lg md:leading-8 break-words\">\u201cI\u2019ve been fighting against Duchenne Muscular Dystrophy since I was born, watching my brothers die in their early 20s and becoming the full-time caretaker for my 14-year-old son who also has DMD. The FDA\u2019s decision last summer to block Elevidys was devastating for my entire family.<\/p>\n<p class=\"mb-4 text-lg md:leading-8 break-words\">\u201cThat\u2019s what made today\u2019s hearing so powerful. For the first time in years, I feel hope. Instead of feeling isolated,\u00a0I\u00a0was in a room where lawmakers and other families spoke about Duchenne with urgency and conviction, not resignation. Watching senators express real anger at FDA roadblocks \u2014 the same anger I feel as a mother denied access to a potential treatment \u2014 was deeply affirming. I can\u2019t thank Senators Rick Scott and Kirsten Gillibrand enough for taking on this fight, and I\u2019m grateful to Senator Ron Johnson for telling me he will take the issue of rare disease treatments to President Trump, if necessary.<\/p>\n<p class=\"mb-4 text-lg md:leading-8 break-words\">\u201cThis fight isn\u2019t over. But real progress seems on the way for my son Ryu and other children suffering from DMD.\u201c<\/p>\n<p class=\"mb-4 text-lg md:leading-8 break-words\">The FDA says it put the gene therapy drug to treat DMD on hold after three patients died during medical trials. Days later, the FDA requested to remove the hold after one of the deaths was not linked to the drug.<\/p>\n<p class=\"mb-4 text-lg md:leading-8 break-words\">We have no other information on what may be the hold-up on distributing the drug.<\/p>\n<p class=\"mb-4 text-lg md:leading-8 break-words\">Copyright 2026 Nexstar Media, Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.<\/p>\n<p class=\"mb-4 text-lg md:leading-8 break-words\"><a href=\"https:\/\/www.ktsm.com\" rel=\"nofollow noopener\" target=\"_blank\" data-ylk=\"slk:For the latest news, weather, sports, and streaming video, head to KTSM 9 News.;elm:context_link;itc:0;sec:content-canvas\" class=\"link \"> For the latest news, weather, sports, and streaming video, head to KTSM 9 News. <\/a><\/p>\n","protected":false},"excerpt":{"rendered":"EL PASO, Texas (KTSM) \u2014 An El Paso mother was in Washington, D.C. to attend a Senate hearing&hellip;\n","protected":false},"author":2,"featured_media":182756,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[12],"tags":[73188,73187,138,140,139,73189,73186],"class_list":["post-182755","post","type-post","status-publish","format-standard","has-post-thumbnail","category-el-paso","tag-angelina-olivera","tag-duchenne-muscular-dystrophy","tag-el-paso","tag-el-paso-headlines","tag-el-paso-news","tag-rare-disease","tag-senate-hearing"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/us-tx\/wp-json\/wp\/v2\/posts\/182755","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/us-tx\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/us-tx\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-tx\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-tx\/wp-json\/wp\/v2\/comments?post=182755"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/us-tx\/wp-json\/wp\/v2\/posts\/182755\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-tx\/wp-json\/wp\/v2\/media\/182756"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/us-tx\/wp-json\/wp\/v2\/media?parent=182755"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-tx\/wp-json\/wp\/v2\/categories?post=182755"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-tx\/wp-json\/wp\/v2\/tags?post=182755"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}