But for Eleanor, there was a lifeline – a breakthrough drug that has stopped the condition in its tracks. “But I’m really lucky – and not everybody is getting that same opportunity.”The drug, Tofersen, is the first effective treatment for MND symptoms. The drug is for those with an inherited form of MND called SOD1 – which makes up 2% of cases. “And this drug is available but it’s not available to patients despite the scientific breakthrough, what does that say? “If recommended, NHS England will work to make it available to NHS patients as rapidly as possible.”