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Doddie Weir to take MND campaign to Downing Street

17 September 2021

Delivering letter from MND patients calling for £50 million from Government for MND research funding

Doddie Weir OBE is calling on people with MND to sign an open letter to Prime Minister, Boris Johnson, that he will hand deliver to Downing Street on Tuesday 21st September. 

The letter, which has already been signed by hundreds of motor neuron disease (MND) patients from across the country, calls for the UK Government to invest in MND research.  It is part of the United to End MND campaign led by charities My Name’5 Doddie Foundation, MND Scotland and MND Association, as well as neurologists and people living with MND.  This coalition is calling for £50 million of UK Government funding over five years to target MND research.

Speaking to BBC Breakfast to launch activities, Doddie said: “We are continuing to fight to try and make a difference, and to try and find a cure for this horrific issue of MND. The UK has the best researchers in the world and at the moment we’re nearly there to find a stoppage or a cure. So this letter, and the money from the Government, will make a massive difference. This will give a lot of hope to people with MND. We need to take it to the next level and with that we need the Government’s help.”

Before his departure to London, Doddie is leading the charge by sending the patient letter on a relay across the nation, to encourage more people living with MND to sign it.  He kicked off the relay on Twitter by passing the letter onto fellow MND campaigner Euan MacDonald from Edinburgh, who also has MND. Link here for more information on the second leg of the relay with MND Scotland.

The letter 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’.

Currently the UK Government's funding for targeted MND research stands at less than £5 million a year, which the campaign coalition says is not enough. £50 million from the UK Government over five years would fund a virtual institute for MND Research, providing the infrastructure needed for accelerating treatments for MND.

The funding bid has already been debated in the UK Parliament after a petition to garner public support gathered more than 100,000 signatures in just three weeks. Members of the campaign coalition have met with key politicians to explain the desperate need for the cash, to shore up the investment made by charities and industry.

With the support of MND charities and neurologists, campaigners are now taking the call directly to Downing Street.  Doddie will be joined by Rob Burrow and others living with MND at the doors of number ten on Tuesday 21st September.  Patients still have the opportunity to add their signature to the letter here: patientsunited2endmnd.org.

Doddie Weir to take MND campaign to Downing Street

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