£50 Million for MND research

[nunhead_man]

Good afternoon Lee

I found out about this in an email sent by Sally Light, the CE of the MNDA to all trustees embargoed for midnight last night - this is wonderful news!

I guess it's now up to the MNDA expert panel of researchers to advise where this is best spent, advising the consortium of MNDA, MNDA Scotland, MyNamesDoddie Foundation and your good selves.

[matthew55]

Probably new cars, holidays and second homes.

[Onein300]

Good afternoon Lee

I found out about this in an email sent by Sally Light, the CE of the MNDA to all trustees embargoed for midnight last night - this is wonderful news!

I guess it's now up to the MNDA expert panel of researchers to advise where this is best spent, advising the consortium of MNDA, MNDA Scotland, MyNamesDoddie Foundation and your good selves.

Andy yes there will be a need for strong governance.

However, we all know what we want/need to do in the large.

This is NOT basic science research, as that will still be funded through standard competitive tenders, like any good science.

This is for key infrastructure to speed drug discovery for new targets, trial and learn both good and bad from every trial. The aim is to move from the current "Go home and get your affairs in order" to "You have MND and I can get you on a trial next week". Of course it won't happen over night, but this is one hell of a boost. And more fundamentally we need the U.K. to be the place that industry comes to, not elsewhere.

It's hard to explain what traditional research funding might leave behind, but think of it this way. Most projects are time limited, and any assets that they may create can be starved of funding afterwards. All those great integration biobanks, register and more etc are run on a shoestring.

This is like more like a factory approach.

Lee

[matthew55]

I've said this before but if they don't know what causes it how are they going to stop it?

[Onein300]

I've said this before but if they don't know what causes it how are they going to stop it?

Thats science for ya!!

Precise causation can be helpful but it is not critical to treat a disease.

Eg heart artery blockages. We can fix without knowing the cause.

For our disease there are almost certainly upstream and downstream processes that progress the disease and also make it a waterfall.

Stopping one, or preventing or removing the damage caused by that process could stop the disease.

The most knowledge we have re causation is for SOD1 mediated disease. We know the trigger. But we have more knowledge on other ‘causes’ triggers. And we know the disease pathology. All of this was not known 10 years ago.

Processes kicked off by a gene implicated disease case could still be targeted for non gene modulated disease as they might be downstream of the process for that disease presentation.

Neuroinflamation is a major target for eg.

To be honest a treatment that stops the disease, or even radically slows, is a cure in my eyes.

Knowing a cause is more useful in prevention. That’s a whole different subject.

Lee

[matthew55]

A zombie apocalypse is one possible outcome. 😉😁😅😎xx

[Ellie]

To be honest a treatment that stops the disease, or even radically slows, is a cure in my eyes.

Maybe in PLS but I doubt anyone with classic ALS would deem their condition 'cured' if it were slowed down, even radically.

A cure is a cure, pure and simple, not a mitigation.

[Peanut]

Boris has made a statement that is consistent with his ambitions on science. This has raised us from below the radar for science to firmly above.

This is the start of a new funding model desperately needed for U.K. science.

Lee

My comment probably came out sounding more negative than intended. This decision is great news and I look forward to the work that will come out of it. I just hope the government will follow through with the cash swiftly. But if there are any delays it looks like there are many effective campaigners who will be on the case.

[LindaB]

Hopefully we'll start to see many more drug trials that more of us can take part in...🙏

[Graham]

Andy yes there will be a need for strong governance.

Lee

And it has started already!!! (Bloody unbelievable)

Lee, please ensure that the money spent updating this forum has provision for a Facebook style predictive text plug-in so that people with real MND may actually use the forum!

(I am watching)

[richard]

so that people with real MND may actually use the forum!

Graham I’m sure you didn’t mean it but the above comment implies that many of us who use the forum don’t have MND. Please explain what you mean by REAL?

I cannot stand or walk, symptoms are spreading. I was diagnosed with MND a few years ago. Am I not someone with REAL MND?

[Ellie]

Strange that I can use a predictive keyboard on the forum but maybe I am just pretending to have real ALS 🤭🤭

[matthew55]

Happy Days me being mute isn't REAL! 😉🤣😁😎xxx

[Ellie]

I'll ring you mate and we'll have a chat 🤥😍😍😘

[Graham]

Hi