Grantham man with MND to run Rob Burrow Leeds Marathon relay
Sean Davies says groundbreaking treatment has given him “hope” as he prepares to run alongside family members to raise awareness and money for MND research.
A Grantham man living with Motor Neurone Disease says taking part in this weekend’s Rob Burrow Leeds Marathon is about proving there is still “hope” for families affected by the condition.
Sean Davies was diagnosed with inherited MND three years ago, but thanks to a groundbreaking genetic therapy, he will join family members in a relay team on Sunday to raise awareness and money for research.
MND is a degenerative neurological condition which affects the brain and nerves, and for many people life expectancy after diagnosis can be just a few years. Sean’s father and grandfather both died from the disease, while his brother and sister also carry the inherited gene.
Sean now receives spinal injections every four weeks to slow the progression of his condition.
He said: “Every four weeks, it’s almost as if you get set back again and you have to pick yourself up and go, right, I am going to run. I am not going to lie down. That is not me.”
The treatment, known as tofersen, is currently only available to a small number of people with a specific inherited form of MND — but Sean says it has transformed his outlook.
“I’ve been diagnosed for three years now, and I’m going to be running a section of this race,” he said. “I know it’s only 5K or 6K, but we as a family together are going to do this.”
Sean says the marathon relay is not only a fundraiser, but also a way of showing what research funding can achieve.
“My father passed away when this didn’t exist,” he said. “The tofersen has given hope. This race for me is a way to give back.”
He added: “Even with an MND diagnosis, I can run and I can do it — and I’m going to do it.”