delivered the letter to 10 Downing Street<\/a> on 13 October and their MP David Burton-Sampson met Andy Burnham last week to discuss it.<\/p>\n“Brogan couldn’t believe it when I told her that Andy Burnham had her letter in his hand,” said Karly.<\/p>\n
“It gives us hope – that he’s read the letter – it just feels like we’ve been going round in circles.”<\/p>\n
Friedreich’s ataxia is a progressive neurodegenerative disease that gives people an average life expectancy of 35-50 years.<\/p>\n
Brogan was diagnosed with the condition in March 2024, and it now affects her heart, speech, swallowing, mobility and hearing.<\/p>\n
Discussions between pharmaceutical company Biogen and the National Institute for Health and Care Excellence (NICE) – the government body that approves drugs for the NHS – have been put on ice.<\/p>\n
About 1,100 people in the UK are believed to have the condition.<\/p>\n","protected":false},"excerpt":{"rendered":"A mother said it was a “huge relief” to know the prime minister had read a letter from…\n","protected":false},"author":2,"featured_media":951536,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[33],"tags":[64,63,137,490],"class_list":["post-951535","post","type-post","status-publish","format-standard","has-post-thumbnail","category-medication","tag-au","tag-australia","tag-health","tag-medication"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/posts\/951535","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/comments?post=951535"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/posts\/951535\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/media\/951536"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/media?parent=951535"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/categories?post=951535"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/tags?post=951535"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}