United2EndMND Update – Global awareness day and more
It’s time for an update! In this short post we discuss the very latest on the current status of the £50m funding commitment rollout, from the UK government, and the promising low dose Proleukin (Interleukin 2) treatment candidate.
But before that, in the week of global awareness day 2023, the single largest ever UK government funded MND grant (£8m) was announced, with the EXPERTS-ALS project. This groundbreaking drug ‘screening’ platform will accelerate the search for the very best treatment candidates at a rate never seen before globally. For full details please see the press release from LifeArc. This unique endeavour is a flagship project of the new MND Research Institute funded from the £50m commitment and will be supplemented by charity contributions.
£50m Pledge Status
We are moving forward, as the amazing EXPERTS-ALS project demonstrates, but we have to say that there are still problems with red-tape that continues to plague our scientists. On the 21st June the UK government issued a surprise press release which is of some concern to the #unitedendmnd patient team. We are liaising with government representatives as there are a number of issues raised by the statement. For example, there appears to be a fundamental misunderstanding of what the money is for (it is for the strategic project plan built by the UK’s leading neuroscientists) with the government still believing it is for almost any MND research. This is INCORRECT. Further there is a statement of £7m allocated this last week but this appears to be business as usual and non MND Institute work, including some fellowships, that were already committed.
Further, our scientists are now being asked to compete (an open call highlight notice as it is referred to in the press release) with other diseases for over £20m of the pledge! This is clearly NOT acceptable.
Drop in on behalf of the MND Association for Global MND Awareness Day in Parliament – 21/06/23
On global awareness day itself, Dave Setters and Lee Millard, representing #united2endmnd, attended a Parliament event designed to brief MPs and ministers on both awareness and other topical areas of interest. Fellow advocates lobbied on care concerns for patients. We were specifically focused on the £50m commitment rollout and the exciting Proleukin (Interleukin 2) drug candidate.
During discussions we handed out two briefing sheets which you might find useful. We would be delighted if you sent them to your MP.
1. The ongoing £50m pledge rollout concerns
2. Proleukin (Interleukin 2) treatment candidate
We spent a good deal of time giving a ‘heads up’ to MPs and ministers on the very exciting possibility of Proleukin (IL2) so that they could be as well informed as possible if the final results of the trial are as positive as we hope. If this happens we can hit the ground running with campaigning activities when the confirmation arrives.
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