Open letter

[matthew55]

It's funny how different people read different things in the written word. Fear not I mean no disrespect, it's just a saying I remember and I used it illustrate the differences in ideas only.

[Doug Carpenter]

Given the second part of that quotation, I do hope, Matthew, you're not implying any element of deception on the part of the dedicated people who prepared the proposal.

Doug

[matthew55]

Oh what a tangled web we weave 😉🤣😁🤗xx

[Onein300]

[QUOTE=Shaun;n63148]

We have a very good and very detailed case. We need everyone behind it.

hello Lee
thanks for supplying the link to the united2endMND proposal it, now makes sense, as info on the MNDA page is a bit vague, and a bit misleading as to what the intent is and if I’m honest I couldn’t understand how £10million a year would fund this magic institute to find a cure. Please correct me if I’m wrong, £50 million is there to kick start more investment and show commitment from the government, as your own figures show £83 million is required.

just a quick question, on the united2end website you ask us to join you, but don’t say how, there is just a contact link or is that it?

shaun

(info can be found on mnda but have to jump around several links to find it)

Shaun,

Hi there. It’s important to note that current U.K. government investment in Targeted MND research is at less than £5m a year.

What does this mean? it’s complicated but it is barely enough to keep the lights on. The Research infrastructure that is needed to advance is fragile and involves many moving parts eg bio banks, computing resource etc etc. Most of this is currently funded project by project. It is unsustainable at the funding levels.

The £50m ask is very detailed (and we have provided ‘grant’ level further detail to government) and will enable building and integration of many existing but under funded components.

We need probably in the region of £100m but the boost of £50m, effectively a 300% increase yearly, will attract industry investment and the charities will also add to the funds over the coming years.

The U.K. is the leader worldwide in mnd research if you examine discoveries and many other aspects. And that has been achieved on budgets barely a whisper of other countries.

For example recently the USA company Amylyx has come to the U.K. for the skills and techniques for the essential phase 3 for amx0035. Why did they do that? U.K. skills.

Re the mnda website, yes I can see that after the website was updated after our visit to Parliament this week with Rob Burrow and others the site is a bit confused. I will get that sorted with the MNDA.

Re the link you talk about, can you point me at the page?

We did have an open letter that has now closed. Is that what you are talking about?

Lee

[Shaun]

[QUOTE=Onein300;n63139]

We have a very good and very detailed case. We need everyone behind it.

hello Lee
thanks for supplying the link to the united2endMND proposal it, now makes sense, as info on the MNDA page is a bit vague, and a bit misleading as to what the intent is and if I’m honest I couldn’t understand how £10million a year would fund this magic institute to find a cure. Please correct me if I’m wrong, £50 million is there to kick start more investment and show commitment from the government, as your own figures show £83 million is required.

just a quick question, on the united2end website you ask us to join you, but don’t say how, there is just a contact link or is that it?

shaun

(info can be found on mnda but have to jump around several links to find it)

[matthew55]

Let me share this story: Thirty years ago my baby daughter was on the Renal ward at Great Ormond Street hospital, where she subsequently died, but while she was alive the hospital received a bunch of brand new televisions. They went straight to the Cancer kids and other wards were given their old sets. You'd think that in thirty years things would change? All day all I hear or see is adverts for Cancer or Hearts and the best we could come up with? Well I bought a hoarding emblazoned with MND in deepest Devon and someone saw a mention on the Great North Run. 🤔xx

[matthew55]

Cloud cockoo land. But who am I to argue?

[Heather R]

Submission looks impressive to my amateur eye, fingers crossed for its success, thanks to mnda and others for work on this

[Onein300]

Blowing our trumpet is all well and good but unless it's Cancer or Heart we will always be behind.

Couldn’t disagree with you more.

Cancer is about 100 diseases and many of them are underfunded. Infact pancreatic cancer, the only cancer that comes near MND brutality and fatality was until 5 years ago desperately underfunded. It was patients and charities that campaigned with government to rectify.

We have a very good and very detailed case. We need everyone behind it.

Lee

[matthew55]

Blowing our trumpet is all well and good but unless it's Cancer or Heart we will always be behind.

[Onein300]

True but we can't compete with Cancer.

We don’t have to compete. The U.K. government need to invest (and they know it) in neurodegenerative disease and we need to make sure we with MND are right there at the front. We are further ahead than Alzheimer’s and mnd would become a model for all diseases.

Have a read of our July submission for the ongoing spending review. We have never been here before. On Tuesday we met with Sajid Javid and many others in Parliament. We need everyone in our community to get behind our campaign, which is unique globally.

https://www.mndassociation.org/app/uploads/2021/07/mndresearchinstitute-2021-spendingreviewsubmission-final.pdf

We are making significant progress.

[matthew55]

True but we can't compete with Cancer.

[Onein300]

I'm hoping that MNDA works with the Government rather than telling Government what to do.

Which British Pharmaceutical companies other than GSK are working on MND?

It is a bit of both in reality. We are working as a coalition of the 3 charities, patients and the lead researchers. There are broken funding systems in government which are recognised by government in their Vision for Life sciences plan. But in reality there are departments who have power and we, and pioneering government teams, have to collaborate to progress.

Re pharmaceutical companies. It’s really not limited to British Pharma at all. Recently Amylyx (usa company) have come to the U.K. for skills! The ask of government is to help fund a centre that will be desirable to any pharma globally. We need to make the U.K. the place where they come.

All the big pharma companies are supporting our ask including biogen, Novartis, Lilly etc

Have a read of our detailed proposal

https://www.mndassociation.org/app/uploads/2021/07/mndresearchinstitute-2021-spendingreviewsubmission-final.pdf

that is now with government.

[matthew55]

At the end of the day everything is about money and greed.

[Graham]

I'm hoping that MNDA works with the Government rather than telling Government what to do.

Which British Pharmaceutical companies other than GSK are working on MND?