Rugby legends hail Motor Neurone Disease breakthrough that ‘will bring hope to thousands’

Two rugby legends have hailed a ‘remarkable’ breakthrough in Motor Neurone Disease treatment.

Doddie Weir, 52, and Rob Burrow, 39, both diagnosed with the condition, spoke yesterday after scientists reversed the devastating impact of MND with a drug called tofersen.

The treatment works in 2% of sufferers where the disease is caused by the SOD1 gene. But it has been described by experts as a “real moment of hope” for the whole disease.

MND Association patron and Leeds Rhino legend Rob said: “I am really pleased to know that there is a treatment which is having an effect on the disease. Today is just the start.”

Rob was diagnosed in 2019, and has since raised millions to fund research and a new centre in Leeds with ex-team-mate Kevin Sinfield.

Dad-of-three Doddie who played rugby union for Scotland and Newcastle Falcons added: “It will give hope to thousands of people that meaningful treatments for MND are within reach.

“While I’m aware that the tofersen study will only impact a relatively small number of people living with MND, crucially it shows that MND research is making important strides.

The founder of My Name’5 Doddie Foundation stressed there remains a need to “keep raising awareness and money to fund this important research”.

Les Wood, 68, of Thorne, S. Yorks, the first British patient in the international trial, had a first dose in 2016. He was filmed a year later, and said: “I could genuinely say, I felt better. I actually walked in the house, without sticks, I thought, ‘This drug’s working.’

“Although my symptoms have continued to worsen, I would not be without the drug and the difference it has made to my life.”

The trial on 108 people, funded by pharmaceutical company Biogen, used a treatment called gene silencing.

Tofersen effectively mutes defective DNA. Dr Timothy Miller, the principal investigator, at Washington University, said: “The stabilisation of function is truly remarkable.”

Dame Pamela Shaw, professor of neurology at the University of Sheffield, added: “Never before have I heard patients say, ‘I am doing things today that I couldn’t do a few months ago’.”

The disease is caused by the death of the nerves that carry messages from the brain to people’s muscles. It affects their ability to move, talk and breathe. Most die within two years of being diagnosed.

The phase III trial, funded by biotechnology company Biogen, involved 108 patients from 10 countries.

Dr Brian Dickie, Director of Research at the MND Association said: “These results provide mounting confidence that Tofersen is having both a biological and a beneficial clinical effect in people living with SOD1 MND.

“They also provide important ‘proof of concept’ that similar gene therapy-based approaches may be helpful for other forms of the disease.”