Parliament September 21st 2021

What a Day!

On September 21st 2021 together with the MND Association, MND Scotland & My Name’5 Doddie Foundation and leading scientists we presented our open letter to 10 Downing Street.

Our delegation on the day was led by Rob Burrow MBE, Stephen Darby, our own Chris Johnson QPM, Nicola Waters and, Mummy with MND, Emma Moss. Unfortunately Doddie Weir was not able to attend as he was ‘pinged’ on his journey to London after being in close contact with a person who had tested positive for covid. He made the only sensible decision and sadly had to return to Scotland. Doddie was, however, with us in spirit and you will be pleased to know that he is well.

The impact we made is clear from these photographs. In addition to the delivery of the letter to No.10, the team met with Secretary of State for Health, Sajid Javid, Minister of State for Health (Care), Gillian Keegan, the Speaker of the House and dozens of MPs to promote our timely ask for a £50m investment in targeted MND Research.

Where are we with the campaign?

Because we all live with MND, time is obviously at a premium and we must continue to take an urgent approach to this campaign. We have made significant and rapid progress since its inception back in October 2019. Through the covid pandemic, progress rapidly accelerated as we gathered together a fantastic coalition of researchers, charities and patients.

In July the coalition presented its detailed spending review proposal to the UK government. The government review is happening right now and culminates in late October 2021. The campaign has been one of relentless escalation, lobbying MPs, ministers and civil servants along with significant media representation. Patients who signed the letter along with over 110,000 supporters who added their name to the earlier petition have all contributed to this.

But, NOW is the time! We have to be relentless, so please look out for other ways you can help. You can do this by checking back to our website from time to time or you may wish to register for updates so you don’t miss a thing!

Please don’t hesitate to contact us online if you have any questions.


by courtesy of the MND Association


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