EL PASO, Texas (KVIA)– An El Paso mother traveled to Washington, D.C., this week to advocate for her 14-year-old son, who is living with a rare genetic disorder.<\/p>\n
Angelina Oliveras said her son, Ryu, has Duchenne muscular dystrophy, a progressive muscle-wasting disease that primarily affects boys and can significantly shorten life expectancy.<\/p>\n
Oliveras attended a U.S. Senate Special Committee on Aging hearing on Capitol Hill, where doctors and patient advocates urged lawmakers to press the U.S. Food and Drug Administration to expand access to medications that could extend the lives of people living with rare forms of muscular dystrophy.<\/p>\n
\u201cI felt today was the first time in a long time that I felt hope,\u201d Oliveras said. \u201cI was grateful to sit in on this hearing here at the U.S. Senate in Washington, D.C., and I\u2019m very grateful.\u201d<\/p>\n
During the hearing, advocates argued that regulatory delays can have life-or-death consequences for families waiting on treatment.<\/p>\n
\u201cBy blocking treatment, the FDA makes our lives harder,\u201d Oliveras said. \u201cMy son is 14 years old. He can die tomorrow. I feel like the FDA is more focused on bureaucracy versus patients\u2019 lives. And we feel unheard. We feel unheard by the FDA.\u201d<\/p>\n
One medication referenced during the hearing was previously halted by the FDA before being allowed to resume months later. However, Oliveras said her son is among many patients who still have not gained access to the treatment.<\/p>\n
Duchenne muscular dystrophy causes gradual muscle degeneration and weakness. There is no cure, though some therapies may help slow the progression of the disease. Oliveras said she hopes sharing her son\u2019s story will bring urgency to federal regulators and expand access to potentially life-extending medication.<\/p>\n","protected":false},"excerpt":{"rendered":"EL PASO, Texas (KVIA)– An El Paso mother traveled to Washington, D.C., this week to advocate for her…\n","protected":false},"author":2,"featured_media":182116,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[12],"tags":[138,140,139],"class_list":["post-182115","post","type-post","status-publish","format-standard","has-post-thumbnail","category-el-paso","tag-el-paso","tag-el-paso-headlines","tag-el-paso-news"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/us-tx\/wp-json\/wp\/v2\/posts\/182115","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=182115"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/us-tx\/wp-json\/wp\/v2\/posts\/182115\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-tx\/wp-json\/wp\/v2\/media\/182116"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/us-tx\/wp-json\/wp\/v2\/media?parent=182115"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-tx\/wp-json\/wp\/v2\/categories?post=182115"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-tx\/wp-json\/wp\/v2\/tags?post=182115"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}