Our Speech today at Steve Barclay’s Ministerial MND Roundtable

Ministerial MND Research Roundtable – Our speech today

At todays ministerial roundtable hosted by the Secretary of State for Health and Social Care, Steve Barclay, David Setters, on behalf of patients United2endmnd gave the following speech. We will be providing a full report on the roundtable outcome in a few days. The roundtable was specifically organised to discuss the detail behind the December 2022 reported release of £29.5m towards the new National Institute for MND Research and we thank the Secretary of State for his support. The specific focus for patients is to ensure the timely, efficient and continuity of the release of funds.

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Mirocals News Article – United2EndMND Comments and thoughts

Mail on Sunday – MND Article 08/01/2023

We are sure many of you will have seen the Mail on Sunday story on Interleukin-2, the treatment under study in the Mirocals trial which has had significant funding from the MND Association and other partners and completed in late 2022.

The emerging results, as reported at the 33rd International Symposium on ALS/MND in December 2022, are truly encouraging.

While the Mail on Sunday story is largely accurate, we would urge you to read this blog post from the MND Association – for background.

For those wanting more detailed information, please also see the Association’s statement on Mirocals published soon after the symposium.

We understand that work on defining which groups of patients that might benefit and analysis of further data on the scope for longer survival is ongoing.

In the meantime, we will be finding out as much information as possible from our contacts in the research community, the charities and other interested parties. We will also be seeking ways to speed up the approval process if there is a ‘growing’ consensus in the scientific community that Interleukin 2 might provide significant benefit to some patients. We will also be investigating potential early access pathways for patients prior to any formal approval. 

Encouragingly, we believe the scientists may already be on the case. As Professor Gilbert Bensimon, one of the lead scientists behind the research, says,

There is still work to be done with sample analysis to understand the beneficial biological effects that we believe are occurring, as well as addressing issues around drug formulation and administration. But the priority will be the discussion with drug regulatory agencies on the next steps to hopefully add this promising treatment to the ‘tool kit’ of therapeutic options available to the medical and patient community

https://www.mndassociation.org/app/uploads/2022/12/Final-MIROCALS-press-release-08122022.pdf

We hope to get back with more news shortly. Please stay tuned to our website and our Twitter account @united2endmnd for further updates.

United2EndMND Funding Pledge – Steve Barclay – Our Response

Significant delivery of promised #United2EndMND funds announced by Steve Barclay.

PatientsUnited2EndMND response – Cautious optimism and keeping up pressure for further improvements

We warmly welcome this announcement. It means that our scientists can go ahead and build the vital UK MND Research Institute which will execute the detailed and coordinated scientific plan presented to Government last year. This plan ensures the collaboration of the most eminent UK MND neuroscientists at the 5 top research centres across the UK, along with many other centres, bringing together a total of over 20 leading establishments. 

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United2EndMND – December 2022 Update

An update on the £50m UK Government Investment from Patientsunited2endMND

things are moving but the fight goes on!

United2EndMND – Status Update

Last week, our world was rocked to the core by the sudden passing of the legendary Doddie Weir. His battle with our disease was played out in full public glare, exposing the brutal nature of the neurodegenerative effects. He did so because he wanted and demanded change. And boy did he achieve! We will remember him fondly and his legacy (or more accurately legacies) will live on.

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An announcement

A significant step forward for the United2EndMND campaign

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Letter to Sajid Javid and Kwasi Kwarteng

This is a letter from people living with MND

The Rt Hon Sajid Javid MP
Secretary of State for Health and Social Care Department of Health and Social Care
39 Victoria Street
London SW1H 0EU

The Rt Hon Kwasi Kwarteng MP
Secretary of State for Business, Energy and Industrial Strategy Department for Business, Energy and Industrial Strategy
1 Victoria Street
London SW1H 0ET

Dear Secretaries of State,

We were, of course, delighted at the Prime Minister’s November 14 announcement that £50 million additional funding would be set aside over the next five years for a MISSION based on the detailed scientific plan that 12 leading MND neuroscientists at 22 centres across the UK had submitted to the Government’s 2021 spending review.

It is now 6 months since that promise and not a single penny has been received to enable the scientists to begin their vital work. As you know, time does not wait for those living with this devastating, terminal condition and the hope that the November announcement gave rise to in our community is now slipping away to be replaced by despair.

We believe that the key barrier to progress is unnecessary red tape and bureaucracy. This is not in line with the more streamlined processes currently being promoted in your departments. We understand that your departments are trying to find “ways to simplify and streamline … processes” and, at the same time, to introduce “a single application and award management system” as part of an independent review of research bureaucracy initiated by BEIS.

Our coalition of charities, researchers and patients have proposed a robust management and oversight structure for a virtual MND Research Institute to receive the funding and to put it to work in the most efficient way. However, we understand that NIHR and MRC are still insisting on a multi-application process. If this is the case, then this is effectively reneging on the Government’s promise of a “Mission”, because the work described in the detailed plan could not be carried out within 5 years and not in the co-ordinated way described. Instead, the scientists will have to waste more precious time, potentially years, on unnecessary paperwork.

As Professor Christopher McDermott of Sheffield University recently said on BBC Breakfast, keeping to the current application process will mean the arrival of the first meaningful treatments that our scientists believe are so close will be put back by “decades, not years.”

It’s also worth pointing out that the investment from the major scientific research and pharmaceutical companies that we envisaged in our plan is unlikely to be forthcoming without the confidence that our co-ordinated plan will encourage.

Given the acute disappointment among MND patients and carers that absolutely no funding has yet been received, we now ask you to ensure that your department commits the promised funds to our detailed scientific plan via a SINGLE APPLICATION process and that the first £10 million of funding is awarded and in-place by November 14, the first anniversary of the Prime Minister’s promise.

Please do not take away the hope that your government’s promise has engendered in the MND patient and carer community and join with us to ensure a world free from this awful disease.

Yours sincerely,

Chris Johnson

Lee Millard

Emma Moss

David Setters

Nicola Waters

A Statement

This is a statement from people living with MND. 

We are hopeful that discussions taking place today involving leading scientists and senior government advisers will open up a way to release the £50 million funding promised by the Prime Minister in November last year for a mission to find effective treatments for MND and enable the immediate rollout of the detailed and co-ordinated scientific research plan across the UK.

This meeting is a follow-up to our April 26 meeting with Gillian Keegan, Minister for Care and her staff.

Having raised the hopes of people suffering with one of the most devastating diseases, it would be an act of remarkable cruelty to dash those hopes at this stage. MND patients can see a way forward, led by the scientific community, and we are not going back to a position of accepting the status quo. We have found our voice and we will use it in the strongest ways until our scientists have the resources they need for their innovative mission to find treatments.

MND is unique in that there are no effective treatments and it has a near 100% fatality rate. It is so traumatic to endure that it is the most common reason people seek assisted death. We now have an opportunity to change this and we must grasp it. We trust the world-leading scientists here in the UK and we demand that the promised funds are released efficiently and promptly to them for their mission to end MND.

Patientsunited2endMND – 10/5/2022

Update – 1st May 2022

Report of meeting with Care Minister Gillian Keegan

26th April

Continue reading “Update – 1st May 2022”