Rugby woman sculpture used to highlight impact of MND
Last updated 17th Jul 2025
An ice sculpture has been unveiled at Parliament Square, modelled by a woman from Rugby.
The life-sized structure will melt in the summer heat in Parliament Square Garden.
This is part of a campaign to bring Tofersen a drug that has been shown to slow, and in some cases halt, progression of symptoms in people living with a rare form of MND caused by a fault in the SOD1 gene for more people to use via the NHS.
Seckin McGuirk, a retired maths teacher from Rugby said: “Every day you live with MND, it feels like you’re losing something. To know there is an effective, proven treatment but I can’t get access due to red tape is frustrating, saddening and simply wrong.
“This sculpture sends a powerful message to those clinicians and policymakers dragging their feet around tofersen.
“I want people to see that this is the reality for those of us with MND. I urge the Government to please, step in and make this drug available to all who need it.”