Parliamentarians discuss the impact of targeted funding for MND research in the search for effective treatments and a cure

The All-Party Parliamentary Group (APPG) on MND held an online meeting yesterday (Wednesday 1 December) to discuss the recent announcement by the Government that it is to invest £50 million in targeted MND research and the importance of ensuring this funding is delivered to where it is needed.

Speakers included: Professor Ammar Al-Chalabi, Professor of Neurology and Complex Disease Genetics at King’s College London; Thos Cochrane, Senior Medical Director at Biogen; and Nicola Waters who is part of the United to End MND patient group.

Professor Al-Chalabi described MND research in the UK as world-leading and said it is his hope that targeted investment will coordinate all research programmes, so they work as a harmonious unit. Currently, only 8% of MND patients can take part in clinical trials but increased investment will mean every single person with MND can be offered the opportunity to participate, and therefore accelerate the search for meaningful treatments.

Thos Crochane provided an industry perspective on the importance of clinicians working within a single framework as well as the need for active collaboration between government, researchers and the pharmaceutical industry.

Nicola Waters, who has been monumental in the United to End MND campaign, talked about the hope that targeted investment has given the MND community. She said:

“I have two sons aged ten and seven – with every birthday or Christmas, I wonder if it will be the last or how many more I will see, and what I will be able to physically do. But the Government’s decision to invest £50m has changed that outlook.”

The meeting was also attended by Geoff Burrow, father of former Leeds Rhinos legend Rob Burrow who is living with MND. Geoff said the £50 million commitment from the Government was “greeted with joy” and thanked MPs and Peers for their support. He urged parliamentarians to push the Government to set out a roadmap for when and how the money can be accessed.

We would like to say a huge ‘thank you’ to all our fantastic and committed supporters. 1,865 of you took part in our ‘invite your MP’ e-action and, because of your support, 34 MPs and Peers were represented at the meeting

Stay up to date with all the APPG on MND news by following its Twitter account.