💙 Update – 2 Jan 2026

Lillia has SOD1 MND. There is only one drug that can slow it: Tofersen.

Around 44 people in the UK are already receiving it. Around 18 others – including Lillia – are still being denied it.

Same disease. Same gene. Same need.
Different postcode. Different outcome.
That is not a clinical decision. It is discrimination.

The NHS continues to delay, block and go silent.
We cannot wait while Lillia’s body fails.

We are now actively setting up private access to treatment as a bridging option, while continuing to fight every NHS route — but we cannot do this without help.

The drug Tofersen itself is free, but each intrathecal administration costs around £4 to 6,000, covering specialist staff, interventional radiology, facilities and monitoring.
Treatment requires multiple injections — typically every 2 weeks initially, followed by monthly dosing thereafter.

In addition, specialist transport costs at least £400 per journey for certain appointments due to her mobility needs.

This means costs quickly escalate into tens of thousands of pounds, purely to access a treatment that already exists.