4 June 2026 News

Mike Thomas and Eleanor Dalley who have MND

The MND Association has today supplied evidence to support the approval of tofersen as a treatment for people with SOD1 MND.  

The window for submissions to the National Institute for Health and Care Excellence (NICE) closes on Thursday (4 June), with assessors now deciding whether the drug should be made available on the NHS.  

Tofersen has been shown to slow, and in some cases even halt, symptom progression in the 2% of people whose MND is caused by a change in the SOD1 gene.   

Factors such as how well the drug works and side effects, along with cost effectiveness, will all now be considered before an independent appraisal committee which will meet to determine its initial decision on 22 October. 

Data from clinical trials of tofersen has been submitted to NICE with the MND Association, in collaboration with My Name’5 Doddie Foundation, stepping in to provide insight and evidence from across the MND community, demonstrating the life-changing impact of tofersen.  

Our submission to NICE includes: 

  • quotes from interviews with people living with SOD1 MND and their carers
  • results from a survey of carers sharing the impact of MND on their quality of life
  • results of a survey of people with SOD1 MND who have been receiving tofersen through an Early Access Programme
  • the nomination of ‘patient experts’ - our trustee Eleanor Dalley, and Mike Thomas - who are receiving tofersen to make personal submissions in writing and at the committee meeting
  • the nomination of ‘patient experts’ - Zahid Safdar, a carer for his wife who has MND – to share the impact of caring for someone with the disease in writing and at the committee meeting
  • the nomination of clinical experts, including neurologists, to submit written statements and attend the NICE committee meeting in October. 

Both Mike and Eleanor have been working with the Association for equal access through our Prescribe Life campaign.   

Eleanor’s father, two aunts and a cousin have all died from MND. She was diagnosed in July 2019. 

She said: “'It's only by hearing from people with SOD1 MND that NICE will really be able to understand the incredible difference tofersen has made and could make to so many other people in the future. 

“I’m looking to return to the workplace this year, something I did not think would ever be in my future. This would not have been possible without tofersen. 

“My daughter said to me ‘with this treatment it gives you hope and it gives us chance of a cure’ and I feel privileged to have the drug.  

“It’s paving the way for other treatments that will come. If I hadn’t been receiving tofersen, I don’t think I would be here still."

Mike, who was diagnosed in January 2022, said: “I have been receiving it since June 2023 and have since had no new symptoms.  

“I fall far less frequently now, and I have never been hospitalised.  As long as I can remain on tofersen, I will generally remain positive and optimistic.” 

Next steps

At the committee meeting on 22 October, NICE will either recommend tofersen for use on the NHS, or agree more time is needed to reach an agreement.  

Needing more time doesn't mean the door is shut, and the appraisal will continue until a final decision is reached. 

In the meantime, we will continue to liaise with both Biogen, the developer of the drug, and NICE.  

If you are travelling outside of your geographical area to receive the treatment, our tofersen travel support fund is available.