10 March 2026 Support
Today we’re introducing a new support fund to help people who are having to travel out of their area to receive tofersen – a life-changing drug for people with SOD1 motor neurone disease (MND).
While tofersen is going through the approval process to determine whether it should be routinely offered to people with SOD1 MND (about 2% of people with MND), it’s currently available through an Early Access Programme (EAP). However, not everyone who is eligible has been able to access it – an issue we’ve been campaigning on for the last year.
Our latest research of specialist MND centres has revealed the majority of people with SOD1 MND are now receiving tofersen. But the survey also highlighted that at least 15 people are having to travel outside their area for their monthly hospital appointments, with this number expected to increase as more people are diagnosed. This is resulting in significant travel costs on top of the financial challenges associated with living with MND.
Help available
The MND Association is stepping in to help.
Our new, targeted fund will cover the cost of travelling to and from appointments, including overnight accommodation if needed. This money is in addition to other Association support funds which people can claim, and will ensure people aren’t left out of pocket by having to travel long distances to access tofersen.
The fund is available now, has been backdated to 1 March and will continue until the end of 2026, when it will be reviewed.
Sally Hughes, Director of Services and Partnerships, said: “Of course we’re delighted more people can now access tofersen but the cost of travelling long distances to attend appointments can be substantial, particularly given their regularity.
“No one with MND should be put under financial pressure by having to travel. This fund will temporarily alleviate some of that pressure for people who can’t receive tofersen at their local care centre .”
If you are eligible for this support fund, please speak to your local care centre to apply. You can contact our MND Connect helpline if you have any questions.
Latest picture
While our survey of care centres shows the national picture has greatly improved over recent months, there are a small number of people who can’t yet access tofersen.
We’re continuing to work closely with neurologists at specialist MND centres to identify ways for everyone eligible to be given tofersen. Where local NHS trusts aren’t making enough progress, we will campaign in those areas.
There’s concern about the capacity in the system to administer tofersen to people who will be diagnosed in the months to come. The National Institute for Health and Care Excellence (NICE) isn’t expected to make a decision about whether tofersen should be made available on the NHS until the end of the year at the earliest.
We will continue to urge the Government to intervene to ensure there is no delay in people diagnosed with SOD1 MND being given tofersen.
And our engagement with NICE will continue to ensure people affected by MND are involved in the process.