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Woman with MND takes drug fight to Parliament

MND Association A man in a blue tshirt and white trousers standing outdoors next to a woman with dark hair and a blue tshirt in a wheelchair on a platform with a blue background and an ice sculpture of a person in a wheelchairMND Association
Seckin McGuirk unveiled the statue with her husband Richard - carved in ice it represents the rapid deterioration MND can cause

An ice sculpture of a woman with a rare form of Motor Neurone Disease (MND) has been unveiled in Parliament Square as campaigners call on the government to give her and others access to a "ground-breaking" new drug.

Seckin McGuirk, from Rugby, is one of 2% of those living with the condition who has the SOD1 gene variation.

The drug Tofersen has been shown to slow and in some cases halt the progress of MND for those with SOD1 and more than 21,000 people have signed a petition calling on the government to make the drug available to everyone with the gene variation.

The Department for Health said the regulator was currently reviewing the treatment for "quality, safety, and efficacy".

The MND Association said more than 30 patients were currently taking Tofersen through an Early Access Programme, offered free by its developer Biogen.

However, the charity said about 20 patients, including Ms McGuirk, could not receive the drug because there was no local service able to administer it via the monthly lumbar puncture required.

Seckin McGuirk at home in Rugby, Warwickshire, sitting in an armchair in a living room, wearing a blue dress with white spots
Seckin McGuirk was diagosed with MND in 2023 and said it's a "terrifying disease"

MND causes muscle weakness that can deteriorate quickly. The condition is usually life shortening and there is no cure.

Ms McGuirk, 57, was diagnosed with MND in 2023 and said "everything is a challenge", from making a cup of tea to getting changed.

The retired teacher added: "The minute I found out there's something that can help me, it gave me hope.

"You hold on to that and fight as long as you can. I just hope that this campaign will reach its objective and I will have a little bit more time with some independence.

"I try to keep the negative thoughts away from my mind, stay hopeful, and carry on fighting."

'Reviewing treatment'

Richard Evans, Director of Engagement at the MND Association, said: "This drug, which is being given for free, can be the difference between life and death for people with SOD1 MND.

"It is self-evidently unfair that the NHS is giving it to some people who would benefit from it, and not to others. We are talking about a small amount of resource that could literally be the difference between life and death."

In response, a spokesperson for the Department of Health and Social Care said its thoughts were with all those living with the debilitating condition.

"The Medicines and Healthcare products Regulatory Agency (MHRA) is currently reviewing this treatment rapidly for quality, safety, and efficacy, for use in the United Kingdom."

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