On February 17th 2026, one of of our patrons, Richard Brailsford accompanied Dr Rachel Jakeman to BBC Radio Oxford. Rachel is step mum to 20 year-old Lillia, who has SOD-1 MND. This affects 2% of people with MND. Significantly, it is the only type of MND where there is a treatment which slows down and in some case HALTS MND. In these engaging interviews, Rachel explains about Lillia’s challenging journey and the family’s incredible fight for justice – for her family and the wider MND community. In Richard’s interview, he talks about his Dad, Chris, The MND Army‘s 14 year battle against MND and how, “It’s the turn of those with MND to get support”. THANK YOU BBC Oxford and especially Lilley Noel for the great interview.
We are fighting with other charities and campaigners to get NICE approval for Tofersen, and NHS funding to administer Tofersen in the short term. If you wish to donate to support funding of treatment centres, to allow Tofersen to to administered, then please click here. Interviews below:
- Dr Rachel Jakeman – Lillia’s fight:
- Richard’s story and The MND Army’s battle:
