Powerful life-sized ice sculpture of terminally-ill Rugby woman will demonstrate impact of Motor Neurone Disease

The MND Association commissioned the sculpture of Seckin McGuirk, 56, and it was unveiled in Parliament Square Garden London yesterday (July 17).

Seckin is among the 2% of people with the SOD1 variant of MND.

A drug called tofersen, proven to slow down and in some cases stop progression of SOD1 MND, is available.

But the retired maths teacher is one of around a dozen people who has been denied tofersen because of NHS constraints – even though around 30 other people are already benefiting from the drug.

Members of the All Party Parliamentary Group on MND will hand in a petition signed by around 20,000 people to Karyn Smith MP and Minister of State at the Department of Health and Social Care.

The petition is calling for the Government to take urgent action so Seckin and other people who need tofersen right now can access it.

Seckin said: “It’s such a terrible illness, it feels like every day there is something going away from you.

“Every day you’re waiting, you’re losing something.”

She said hearing about tofersen has given her hope to carry on with her life for as long as possible.

Tanya Curry, MND Association chief executive, said: “It cannot be right that there is a drug being provided for free that could save some people with MND from rapid physical deterioration and death, and yet they cannot get access it because the NHS is refusing to cover the costs of administering it.

“The fact that some people are being refused this drug while others receive it is deeply unfair and amounts to a lottery where some people will live and others condemned to a fate of rapid physical decline and certain death.

“We’re calling on the Government to step in and ensure no one falls through the cracks.”

“Every day that passes without these people being able to access this free drug is another day of avoidable physical decline.

"We need the Government to act now, because those who need tofersen do not have time to wait.”

To sign the petition go to: https://act.mndassociation.org/2025-prescribe-life-tofersen

For more information about MND and the MND Association go to: www.mndassociation.org