But for Eleanor, there was a lifeline - a breakthrough drug that has stopped the condition in its tracks. Image: Eleanor, pictured on holiday, said Tofersen had halted her symptomsThe drug, Tofersen, is the first effective treatment for MND symptoms. These issues have resulted in a postcode lottery for access, with people like 19-year-old Lillia Jakeman losing out. 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?