{"id":504754,"date":"2026-06-17T18:57:17","date_gmt":"2026-06-17T18:57:17","guid":{"rendered":"https:\/\/www.newsbeep.com\/ie\/504754\/"},"modified":"2026-06-17T18:57:17","modified_gmt":"2026-06-17T18:57:17","slug":"hope-for-donegal-boys-as-dmd-drug-approved-by-hse","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/ie\/504754\/","title":{"rendered":"Hope for Donegal boys as DMD drug approved by HSE"},"content":{"rendered":"<p>A breakthrough has been reached in the fight to get life-changing medication for Irish children with Duchenne muscular dystrophy.<\/p>\n<p>Givinostat, the drug at the centre of the campaign, has now been approved by the HSE Senior Leadership Team.<\/p>\n<p>The approval brings families a step closer to treatment for their boys affected by the <a href=\"https:\/\/www.donegaldaily.com\/index.php\/tag\/duchenne-muscular-dystrophy\/\" target=\"_blank\" rel=\"noopener nofollow\">rare and progressive condition, <\/a>which causes muscles to weaken over time.<\/p>\n<p>Donegal Senator Manus Boyle confirmed the update this evening, describing it as a \u201csignificant milestone\u201d.<\/p>\n<p>\u201cI am delighted to share this evening that Givinostat has now been approved by the HSE Senior Leadership Team,\u201d he said.<\/p>\n<p>\u201cThe application has now moved to the Managed Access Protocol stage, which is one of the final steps before access can be made available.<\/p>\n<p>\u201cThank you to everyone who has supported this journey. Thank you to Minister Jennifer Carroll MacNeill for her support and engagement on this issue.\u201d<\/p>\n<p>The news will be warmly welcomed by all who support children like nine-year-old Aaron Langan from Laghey, whose campaign for access to Givinostat gathered huge public support in recent months.<\/p>\n<p class=\"font-sans font-semibold text-xl md:text-[30px] leading-9 text-primary w-full\">\n        You may also be interested in\n    <\/p>\n<p>            <a href=\"https:\/\/www.donegaldaily.com\/courts\/trio-in-court-charged-with-violent-disorder-in-letterkenny-638416\" class=\"block w-2\/5 shrink-0\" aria-label=\"Trio in court charged with violent disorder in Letterkenny\" rel=\"nofollow noopener\" target=\"_blank\"><\/p>\n<p>        <img decoding=\"async\" loading=\"lazy\" src=\"https:\/\/www.newsbeep.com\/ie\/wp-content\/uploads\/2026\/06\/trio-in-court-charged-with-violent-disorder-in-letterkenny.png\" class=\"max-w-full w-full h-full object-contain relative z-10\" width=\"150\" height=\"84\"  alt=\"Trio in court charged with violent disorder in Letterkenny\" \/><\/p>\n<p>            <\/a><\/p>\n<p>            <a href=\"https:\/\/www.donegaldaily.com\/news\/car-with-no-tax-insurance-nct-and-false-plates-seized-638493\" class=\"block w-2\/5 shrink-0\" aria-label=\"Car with no tax, insurance, NCT and false plates seized\" rel=\"nofollow noopener\" target=\"_blank\"><\/p>\n<p>        <img decoding=\"async\" loading=\"lazy\" src=\"https:\/\/www.newsbeep.com\/ie\/wp-content\/uploads\/2026\/06\/car-with-no-tax-insurance-nct-and-false-plates-seized.jpg\" class=\"max-w-full w-full h-full object-contain relative z-10\" width=\"150\" height=\"84\"  alt=\"Car with no tax, insurance, NCT and false plates seized\" \/><\/p>\n<p>            <\/a><\/p>\n<p>The urgent case of Aaron, the son of Sinead and Dermot Langan, has been raised in the D\u00e1il and Seanad, with Donegal representatives warning that children with DMD are in a race against time because the treatment is only available to children who still have mobility.<\/p>\n<p>Aaron had to begin using a wheelchair earlier this year, adding further urgency to his case.<\/p>\n<p>A <a href=\"https:\/\/www.donegaldaily.com\/lead-stories\/we-are-out-for-a-result-team-aaron-rally-calls-for-urgent-drug-access-635300\" target=\"_blank\" rel=\"noopener nofollow\">major public rally<\/a> was held on The Diamond in Donegal Town on 24th May, where a large crowd gathered under the Team Aaron banner to support Aaron and his family.<\/p>\n<p>The case of 10-year-old Diarmuid O\u2019Sullivan from Ballybofey, has also been central to the nationwide campaign.<\/p>\n<p>Diarmuid\u2019s older brother Nathan has the same condition and has had access to the drug through a UK trial for more than 10 years. His family\u2019s case was raised in the D\u00e1il by <a href=\"https:\/\/www.donegaldaily.com\/index.php\/news\/hse-enters-drug-talks-as-donegal-tds-stress-we-cannot-put-a-cost-on-the-life-of-a-child-633713\" target=\"_blank\" rel=\"noopener nofollow\">Deputy Pearse Doherty<\/a>, who highlighted the distress of one brother having access to the treatment while Diarmuid continued to wait.<\/p>\n<p>Around 150 children live with DMD in Ireland.<\/p>\n","protected":false},"excerpt":{"rendered":"A breakthrough has been reached in the fight to get life-changing medication for Irish children with Duchenne muscular&hellip;\n","protected":false},"author":2,"featured_media":504755,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[2],"tags":[61,60,43],"class_list":["post-504754","post","type-post","status-publish","format-standard","has-post-thumbnail","category-ireland","tag-ie","tag-ireland","tag-news"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/posts\/504754","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/comments?post=504754"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/posts\/504754\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/media\/504755"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/media?parent=504754"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/categories?post=504754"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/tags?post=504754"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}