Seckin is among the 2% of people with MND whose disease is caused by a fault in the SOD1 gene; and for them, there is a ray of hope. A groundbreaking new treatment, tofersen, has been developed to treat this type of MND. It can significantly slow down the progression of the disease and in some cases stop it altogether – something we have never seen before in an MND treatment.

But Seckin has been told she can’t have tofersen, due to NHS resource constraints.

Sign our petition urging the Government to make tofersen available to Seckin and the others with SOD1 MND.

• 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.