MND patient still running 'thanks to gene therapy'

12 hours ago

Charis Scott-HolmEast Yorkshire and Lincolnshire

Sean Davies, who has a rare inherited form of MND, with his wife Mary

Family handout A man with his arm around a woman's shoulders. They are both smiling at the camera. The man is wearing a brown leather hat and a light coloured suit with a yellow bow tie. The woman has mid-length brown hair. — Sean Davies, who has a rare inherited form of MND, with his wife Mary

A man who is still running three years after being diagnosed with motor neurone disease will take on a marathon relay challenge with his wife, son and other relatives.

Sean Davies, from Nocton, near Lincoln, has a rare, inherited form of MND and has benefited from specialist gene therapy.

He said it was unlikely he would be able to take part in the Rob Burrow Marathon in Leeds without the treatment.

"While there's currently no cure, there is hope," Sean said. "And if the progress seems minor, it really doesn't feel that in real life. I'm three years on from my diagnosis and still running."

Sean says he inherited the disease from his father

Family handout A man and a woman in a loving pose, touching their faces together in a black and white picture. The man is wearing a dark blazer and light shirt, the woman is wearing a black top. — Sean says he inherited the disease from his father

Sean, who works for South Kesteven District Council, has a slow-moving version of MND, which means his life expectancy is longer than that of many others diagnosed with the disease.

People with the inherited condition, who make up about 2% of MND patients, can access gene therapy.

The Rob Burrow Marathon will be staged on 10 May.

It is named in memory of the former rugby league player who was diagnosed with MND in 2019 and became an inspirational campaigner up to his death in 2024.

Sean is running to raise money and awareness of the disease.

"When we all cross the finish line together, I want people to see the size of the group and what a difference the funding has made," he added.

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