Parliament Square will be host to an emotional art installation (Image: Getty)
An ice sculpture of a woman living with motor neurone disease (MND) will be installed in Parliament Square next week – and left to melt – to highlight the devastating reality of being denied access to a potentially life-saving drug.
The striking installation, which takes place on Wednesday, July 17, will feature a life-size ice figure of Seckin McGuirk, a woman with a rare genetic form of MND caused by the SOD1 gene. Despite the existence of a breakthrough drug called tofersen, which has shown the ability to drastically slow – and in some cases stop – the progression of this cruel disease, Seckin and others are being blocked from receiving it.
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Tofersen is currently being provided free of charge by the pharmaceutical company while it goes through regulatory approval. But campaigners say that some NHS trusts are refusing to provide the treatment, citing resource and cost concerns – effectively putting bureaucracy ahead of lives.
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The campaign, spearheaded by the MND Association’s Prescribe Life movement, is calling for immediate removal of these barriers, warning that every day of delay pushes people like Seckin closer to irreversible decline.
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A spokesperson for the campaign said: “This ice sculpture is not just art – it’s a visual metaphor for what it feels like to live with MND and be denied hope. People are quite literally wasting away before our eyes, while red tape holds back a drug that could give them more time.”
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The public display aims to pile pressure on health leaders and raise awareness among MPs and ministers, many of whom are newly elected, about the urgent need for equitable access to tofersen.
Campaigners are urging the public and the media to help amplify the message: people with MND don’t have time to wait.