What is the drug Tofersen used for?

Tofersen is a drug shown to slow the progression of motor neurone disease (MND) in individuals with the SOD1 gene variation.

Why is the Jakeman family walking to Westminster?

The family is walking to Westminster to call for urgent access to the drug Tofersen for 19-year-old Lillia Jakeman, who has a rare form of MND.

When will NICE decide on routine funding for Tofersen?

NICE's evaluation for routine NHS funding of Tofersen is expected to begin in late March 2026.

Home / Health / Family walks for life-saving MND drug access

Family walks for life-saving MND drug access

24 Jan

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Summary

Family walks from Southampton to Westminster for MND drug.
Drug Tofersen shows promise in slowing rare MND form.
NICE evaluation for routine NHS funding due late March 2026.

Family walks for life-saving MND drug access

A family has embarked on a walk from Southampton to Westminster, a journey initiated on Friday, January 23, 2026, to advocate for immediate access to Tofersen, a groundbreaking drug for motor neurone disease (MND).

Lillia Jakeman, a 19-year-old from Romsey, Hampshire, has a rare SOD1 gene variation of MND. Tofersen has demonstrated an ability to slow the disease's progression in patients with this specific genetic marker.

University Hospital Southampton has stated it lacks funding to provide Tofersen via an early access program. A Department of Health and Social Care spokesperson indicated that the National Institute for Health and Care Excellence (NICE) is currently evaluating the drug's routine funding by the NHS.