{"id":930114,"date":"2026-10-12T10:10:16","date_gmt":"2026-10-12T10:10:16","guid":{"rendered":"https:\/\/www.newsbeep.com\/ca\/930114\/"},"modified":"2026-10-12T10:10:16","modified_gmt":"2026-10-12T10:10:16","slug":"emily-felix-secures-rare-disease-drug-after-years-of-fighting","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/ca\/930114\/","title":{"rendered":"Emily Felix secures rare disease drug after years of fighting"},"content":{"rendered":"

It is a huge week for Emily Felix, who secured a major victory after years of fighting for those with her rare disease.<\/p>\n

The Kilkenny woman has Friedreich’s ataxia,<\/a> a very rare neuromuscular disease that progresses over time and affects everything from her movement to her speech.<\/p>\n

Emily revealed she has finally received Skyclarys, a life-changing drug designed to slow down symptoms, which the HSE approved in August. She took to social media <\/a>to say ‘this victory will always mean so much more than a medication’ to her.<\/p>\n

\"EmilyEmily Felix. Pic: Emily Felix \/ Supplied<\/p>\n

In 2023, the drug omaveloxolone was approved in the US under the brand name Skyclarys to treat Friedreich’s ataxia, and subsequently approved in Europe 12 months later. While Skyclarys can’t cure Friedreich’s ataxia, it reportedly can slow progression of the disease by up to 55 per cent.<\/p>\n

Emily shared a snap of herself beaming as she held the medication outside of Kilkenny Castle. She said, ‘There are no words to fully describe what it means to finally hold Skyclarys in her hands.<\/p>\n

\"EmilyEmily Felix. Pic: Emily Felix \/ Supplied<\/p>\n

‘After everything it took to get here, I\u2019m filled with relief, gratitude and hope for what this treatment can mean for the future,’ she penned. <\/p>\n

Emily thanked everyone who helped advocate, including her family, ‘who were the driving force behind this campaign from day one.’<\/p>\n

\"EmilyEmily Felix and her sister, Anna. Pic: Emily Felix \/ Supplied<\/p>\n

‘Who stood beside me through every setback and never accepted that no was the final answer, I will never be able to thank you enough. What began with one family\u2019s determination became a movement because so many of you chose to stand with us. You reminded us that we were not fighting alone.’<\/p>\n

‘I am so proud of what we achieved together. Younger Emily would be so proud to see how far we came, and that I used my voice to fight not just for myself, but for others across Ireland living with Friedreich\u2019s Ataxia.’<\/p>\n

\"EmilyEmily Felix and her family. Pic: Emily Felix \/ Supplied<\/p>\n

‘This victory will always mean so much more than a medication to me. It is proof of what can happen when people come together and refuse to give up. We deserve more than just to survive. We deserve to live,’ Emily ended the post. <\/p>\n

Emily and her family have been on quite a journey since receiving her diagnosis when she was 12, after she started to have problems with her balance. Spirits are likely very high in the Felix household this weekend.<\/p>\n