Witney campaigner calls for government to boost MND funding
Richard Brailsford highlights funding gap between motor-neurone disease and other conditions
A Witney campaigner is calling for increased funding for motor neurone disease (MND), after losing his father to the condition and launching a long-running fight for a cure.
Richard Brailsford created The MND Army in 2013, a year after his father Chris died.
“He was a very fit 70-year-old; a former climber, runner, walker, world-traveller,” Richard said. “He just loved life and was very independent.
“Then he started struggling to carry a couple of cups of tea, he was stumbling and falling, he started to lose the use of his arms and eventually his legs and then it started to really hit his breathing.”
Chris died just nine months after his diagnosis.
“That really was the trigger for us to start trying to fight back and cure what is currently a terminal illness,” Richard added.
Since then, The MND Army has raised money through events including cycling challenges and DukeFest in Woodstock, with a focus on funding research.
“As much as we care about home adaptations, if you cure MND you don’t need anything else,” he said. “That's very much route one.”
Funding gap concerns
Richard said research and treatment for MND continues to receive significantly less funding than other conditions.
"For example, £120 million is spent on just one weight loss drug - a very important cause - and we know that billions a year go into cancer care, which is also quite right," he said. "But the amount of money that goes into MND per year is a few million pounds at most."
He acknowledged that disparity in funding is die to the rarity of the disease, but added that low visibility is largely due to its rapid progression.
“The reason MND is not seen so much is because people die so quickly,” he said.
Richard also pointed to previous government commitments, saying more long-term investment is now needed.
“The government did agree to give £50 million over three years, but that took years and years of campaigning,” he said. “We now need to get an extension of that. We need that next level of investment to come through.”
Call for access to new treatment
Specifically, Richard is pushing for funding to support access to a drug called Tofersen, which is currently under review in the UK.
The treatment has shown potential to slow or halt the disease in a small number of patients with a specific genetic form of MND.
“It is a really promising drug,” Richard said. “It is free at the moment and we’re asking for is £8,000 for the patient to have a lumbar puncture, which needs trained staff."
He is calling on the government to provide interim funding while the drug awaits full approval, adding that progress like this could help drive further research investment.
"There's never been hope for motor neurone disease," he said. "But finally there's something positive and we need to drive this."
Richard said he will not stop trying to help others to bring him and his family closure.
He said: "When Dad was sadly close to death, one thing I promised him is that we wouldn't give up trying to find a cure.
"We can't bring Dad back and we can't bring others back who I know we've lost, but we can create some hope for the future.
"When we cure the disease, I think my dad will finally be at peace and we as a family will."
Government response
A government spokesperson said: “Motor Neurone Disease (MND) has a devastating impact on people’s lives and we are determined to find a cure. This government will continue to invest in MND research across all areas, including causes, prevention, diagnosis, treatment and care.
“Tofersen is approved for use in the UK and the National Institute for Health and Care Excellence (NICE) is working with the manufacturer on whether to recommend it for routine funding by the NHS. If recommended NHS England will work to make it available to NHS patients as rapidly as possible.”