#United2EndMND - Your URGENT help needed

[denise]

To be honest I'm beginning to think everyone is a burden on the NHS. But that might just be me 😤

[matthew55]

Believe what you like but do not insult me. Like I put truth hurts. I demand an apology.

[Doug Carpenter]

Nonsense Matthew.

Think of new members for God's sake!

Doug

[Onein300]

Hi Lee,

I don't imagine any number of our MPs will be able to influence the outcome as previously.

What may influence are the cold hard facts: -

1. People without MND are not a burden on Government.

2. Who on earth does your new vehicle belong to??? GSK or anyone? Without a clear commercial proposition it could do more damage than good with players in the market seeing favouritism.

Morning Graham. Two good comments. Of course there is a short answer and a long answer to both. Some shortish answers...


1. We are clearly not the burden of cancer and dementia, but we are significant especially as MND hits in the prime of life. But we accept that this not an economic case on the burden benefits alone, although the fact that we spend more on 1 benefit alone (PIP) than we do on research is quite staggering. It is a commendable aim to even reverse this, almost 'care not cure' approach. Our proposal is both a humanitarian case but more importantly an economic case on industry attraction to the UK. That leads me to..

2. This Institute is not going to be owned by Industry. We are working with industry (all of the global players) to bring it to fruition but we recognise, and they do, that it must a shared asset. There are many working examples of such structures, eg the Dementia Institute jointed funded by government and charities, the Francis Crick Institute etc etc.

At the very heart of the MND treatment challenge is our underfunding. Up until now core science has dominated, with the need for competitive tenders to allow targets, pathways, and modes of action to be discovered. Each project has been funded individually, even some projects which may result in critical infrastructure for the community, eg MND Biobank, register, biomarkers etc. As a result all of these components struggle to carry on when the short term grants expire. So we have almost a satellite of dispersed capital 'spluttering' on empty.

Now, in 2021, MND is translational ready. Ie we are ready to speed the pipeline, screen drugs etc etc. To do this we need a national infrastructure and this is what the Virtual MND Translational Research institute is aiming to be.

And there is so much more to say, such as the U.K. patient community, which is something industry desperately needs easy access to in trials. We have possibly the most integrated and willing community worldwide. We just need infrastructure. And without doubt the U.K. leads the world in MND research.

Underlying all this is the brutal fact that we only receive less than £5m a year in targeted research funds.

Finally, we are not doing this in isolation. The government itself has recognised our needs in its own Life Sciences Vision published in July this year. There are sections in here that, perhaps just perhaps, have been written in response to our proposal.

https://www.gov.uk/government/public...ciences-vision

It is well worth a read.

Best wishes

Lee (aka Onein300)

[matthew55]

Sadly they just want all of us to die as soon as possible. Truth hurts. x

[Doug Carpenter]

People without MND are not a burden on Government.

Pardon!

Do cancer patients, dementia sufferers, people with arthritis not burden the NHS?

Doug

[Graham]

Hi Lee,

I don't imagine any number of our MPs will be able to influence the outcome as previously.

What may influence are the cold hard facts: -

1. People without MND are not a burden on Government.

2. Who on earth does your new vehicle belong to??? GSK or anyone? Without a clear commercial proposition it could do more damage than good with players in the market seeing favouritism.

[Deb]

Hi Lee, thank you so much for the link.

I can't seem to get it to load on my tablet but will do it on my laptop when we get home. X

[Hakuna]

I've downloaded the email by copying and pasting into my email and sent it. Keeping everything crossed that it does some good. Needs to be soon for me.

[Doug Carpenter]

Done

Doug

[Gordan1111]

Thanks Lee I'll do tomorrow

[Onein300]

I think it's because I used my kindle....will try on my lap top 👍😉 Ellie xx

Arhh yes. Kindle won't support word direct.

Lee

[LindaB]

I think it's because I used my kindle....will try on my lap top 👍😉 Ellie xx

[Onein300]

Tried downloading the template...which I did....then wouldn't allow me to open.

Will you be posting this on social media platforms (twitter)?

It should be ok. Which one you down loading, patient one? What browser you using? You should be able to see in browser and copy and paste.

We have not had any reports of issues.

it's a word template, but the browser should just open as text. It's on Twitter as well.

I can paste into the forum if you continue to have problems.

best wishes
Lee

[Ellie]

LindaB It opened for me, even passed my security scan! xx