Sean's story

The SOD1 gene runs in Sean’s family. He is currently receiving tofersen at Sheffield Teaching Hospitals under the care of Professor Shaw.

I’m a local government worker, a father of five children, and a husband who has been married to my wife for 30 years. My father died of MND; I watched him pass away. My grandfather we believe died of it, and so did my aunt, uncles and a cousin. It runs in my family, and it’s been slowly progressing in myself.

I enjoy running, it’s wonderful - it gets me out and helps clear my head. I’d noticed the impact of my illness on my mobility more as my times got worse, but in the past year I’ve been having the tofersen injections through the early access programme.

I’ve already noticed the difference that the treatment has made. If you know Sheffield’s Hallamshire Hospital, you’ll know about the stairs. I get my treatment on floor M. I can now get up there in under 3 minutes, which is faster than the lift. If you want a challenge, try those stairs - and bear in mind that, thanks to Tofersen, someone with MND can currently do it in 2:52!

And it’s making a difference to my family too. I have five children. We know what the future holds; we know there’s a 50% chance that each one of them might develop MND. The fact that this treatment is working means we have some hope. 

I know what happened with my father, and how it was when I was first diagnosed with MND - there is no hope. There is no treatment. There’s nothing. You know how it’s going to end, and it’s not a nice end.

What this treatment represents, in real terms, is genuine hope. Hope that I will be around here longer as a father, as a husband. That I can still go out there and do my job in the future and continue to be a productive member of society. Hope is not something to be underestimated; the difference it makes is enormous.