A personal letter from hundreds of people living with MND to the Prime Minister Boris Johnson, pleading for funding, was presented at 10 Downing Street on Tuesday 21st September.
United to End MND – a campaign led by MND Scotland, MND Association and My Name’5 Doddie Foundation, neurologists and people living with MND – calls for £50 million from the UK Government for targeted MND research.
Former Leeds rugby league captain, Rob Burrow, and Bradford footballer, Stephen Darby, joined a delegation of people calling for the funds at Downing Street on Tuesday.
The group delivered a letter explaining that a cure for the disease is close to being found, provided there is a united approach to action and investment.
It states ‘MND is a death sentence’ but that ‘research has now reached a point where a cure or life-saving treatments can be found’. It continues ‘The current piecemeal and protracted approach of funding individual projects will not deliver the life-saving treatments we need…we urgently appeal for action and investment now’.
Darby, who announced that he had been diagnosed with the disease in September 2018, said: “After all of the hard work that has gone into the campaign it felt massively important to be here representing every family that has gone through MND.
“It’d mean everything to me to get the investment needed. UK researchers are doing amazing things with little funding and this boost would help to speed things up and give families the hope they need.”
In the lead up to this event, rugby legend Doddie Weir and Euan MacDonald, founder of the Euan MacDonald Centre for MND Research, helped kickstart a nationwide ‘MND letter relay’ from Scotland to Westminster, to boost signatures on the letter before being delivered to Downing Street.
To find out more visit www.mndscotland.org.uk/united.