16 September 2025 News

Mike Thomas, who has MND, from Bridgend
Mike Thomas from Bridgend

A man living with SOD1 MND, who travels hundreds of miles for tofersen treatment every month, has shared his experiences with a Government panel. 

Mike Thomas, 61, spoke at the UK Neuro Forum on 10 September, an advisory body consisting of representatives from the Department of Health and Social Care (DHSC), devolved governments, the Neurological Alliances from all four UK nations, and NHS England. 

He was invited to talk in a segment on cross-border care, due to the fact he commutes to Sheffield from his home in Bridgend every four weeks receive the drug via a lumbar puncture.  

The University of Sheffield's SITraN (Sheffield Institute for Translational Neuroscience) collaborated with Sheffield Teaching Hospitals NHS Foundation Trust as part of the research trial and administers the drug to several people with SOD1 MND. 

Tofersen is being made available to patients free of charge through an Early Access Programme (EAP), with many missing out because their local services do not have capacity to give it to them. 

Every day without the drug risks further disease progression and reduced life expectancy, an avoidable situation that is unacceptable for those affected. 

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On speaking to the forum and travelling to Sheffield every month, Mike said: “I know it is a lot of travelling, but I'm so grateful to be one of the fortunate ones receiving tofersen.  

“I was pleased to have the opportunity to speak before the panel on my experiences, but we need the support of key decision makers to ensure this amazing drug is on the NHS.  

“Tofersen offers the chance of longer life expectancy, more time to enjoy life with family, and hope for the future.  

“People with MND don’t have time to wait and tofersen must be made available to all who need it.” 

The UK Neuro Forum was established following the #BackThe1in6 campaign, led by the Neurological Alliance and supported by over 100 organisations, including the MND Association.  

It highlighted that 1 in 6 people in the UK live with a neurological condition and the taskforce debates issues like access to treatments, mental health support and not getting the right information when people are first diagnosed.