Join our Prescribe Life campaign to help people living with SOD1 MND access a life-changing treatment

Add your name now to join our campaign to make this revolutionary SOD1 MND drug available to all who need it. 

Right now, some people can access this life-saving treatment – but shockingly, some have been told their local NHS can’t give it to them. 

In July 2025 we handed in a petition to the Department of Health and Social Care, with over 21,000 signatures demanding that the Government ends this injustice. 

If you agree that everyone with SOD1 MND should be able to access a treatment that could save their lives, add your name to join our campaign. 

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  • Why isn't tofersen available for everyone?

    Tofersen is a revolutionary new treatment that is available for the 2% of people with MND whose disease is caused by a fault in the SOD1 gene.

    Tofersen is currently being assessed for whether it will be available on the NHS, but that will take several months at least.

    In the meantime, the manufacturer has made tofersen available to patients free of charge through an Early Access Programme (EAP), as long as the NHS provides the staff time and resources.

    However, some people who desperately need this treatment are missing out, because their local services do not have capacity to give it to them via the required monthly lumbar puncture – even though the drug itself is available for free.

    Sadly, Seckin was given the terrible news that she cannot currently be given tofersen. Seckin and her family have to live with knowing that there is a freely available drug that could significantly extend her life – but she cannot have it.

    That’s why we are calling on the Government to take urgent action so everyone who needs tofersen can access the EAP. It cannot be right that some people who desperately need this drug cannot receive it. People with MND do not have time to wait.