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Teen wins battle for 'groundbreaking' MND drug

A 19-year-old with motor neurone disease (MND) says she has been given a "future" after winning a battle for access to a groundbreaking drug.

Lillia Jakeman, of Romsey in Hampshire, has a rare form of MND which the drug Tofersen has been shown to slow.

The medication has not yet been approved for use on the NHS but after an awareness campaign by Lillia and her family she has now been offered treatment at King's College Hospital in London.

A Department of Health and Social Care (DHSC) spokesperson said the National Institute for Clinical Excellence (NICE) was working with the manufacturer on whether Tofersen should be routinely funded by the health service.

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Source: BBC News 24 February 2026

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