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£50 Million for MND research

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  • Graham
    replied
    Thanks Linda.

    The David Dimbledy lecture was interesting in that just a few expert people can make all the difference. Money is important, however intelligence is what we really need.

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  • LindaB
    replied
    'Do not go gentle into that good night...rage rage against the dying of the light' (Dylan Thomas)

    The disability and charity groups who do well all have loud and strong voices and advocates. More power to the campaigners who have managed to secure the funding✊🏻👏🏻👏🏻

    Leave a comment:


  • matthew55
    replied
    TBH 50 million is a drop in the ocean considering the multi millions used in pharmacology. We really should do the English thing and die quietly without fuss. 😉😂😁👍xx

    Leave a comment:


  • Graham
    replied
    Frustrating, frustrating, and frustrating.

    Whenever and whatever.

    Maybe next year let us know if we are still here. I'm heading for a stiff whisky from the cabinet!

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  • matthew55
    replied
    I for one thank you Lee I certainly don't use Fools Book. 📙📖😉😁xx0
    Last edited by matthew55; 11 December 2021, 11:29.

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  • Onein300
    replied
    Graham,

    I am trying to answer your questions and you are failing to understand that I agree with you that we need governance and it will be there.

    Any comments that you keep repeating about access to accounts are irrelevant. They don’t exist yet!!

    The monies are not going to the MNDA. Have I not made that clear?

    We are at the stage where we have the once in a lifetime government commitment. A new entity is likely required to receive the funds. The coalition is actively working on it with government.

    I started this thread to keep a part of the community that doesn’t use face book et al to keep people informed. I will still do that.

    Your references to alleged MNDA spending show you apparently have more exposure than I!

    I further repeat please take your issues with the MNDA up with them directly.

    Our debates on here are not helping anyone.

    Please support and motivate the community.

    We have no time for negativity.

    Lee
    Last edited by Onein300; 11 December 2021, 10:48.

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  • Graham
    replied
    You continue to be defensive Lee. Think of my comments as that of a non-executive director trying to see how your project could fail. We all want you to succeed!

    Not having a view of the management accounts is a major problem.

    You are correct in saying that IT has moved on immeasurably but I did my first own company website in 2000 but I didn't charge the company that much but I could have. Similarly, the MNDA forked out £400,000 for a database in recent times and I am pretty certain that my app's database is far more extensive!

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  • matthew55
    replied
    But it shows room for improvement. 🍷😁😊🤗xx

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  • Onein300
    replied
    Originally posted by matthew55 View Post
    Glass half full eh? 🍷😉😂🤗xx
    Well half empty helps no one does it?

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  • matthew55
    replied
    Glass half full eh? 🍷😉😂🤗xx

    Leave a comment:


  • Onein300
    replied
    Graham,

    I am trying to provide you with information. I suggest you set aside some time to read the details. It is indeed comprehensive.

    We have provided multi layered documents including one pager summaries here

    https://patientsunited2endmnd.org/documentation/

    You would get a lot of benefit from reading the ‘drill down’ document of the proposed institute describing the 3 key aims here

    https://patientsunited2endmnd.files....-institute.pdf

    In 2022 as funds are released, projects such as ‘better outcome measures’ will become possible. But I repeat we have only just received the campaign win so keep an eye on the websites for updates. I will also post on here.

    I don’t think you quite understand the magnitude of the capability that could be enabled with this record funding.

    This is ALL aligned at bringing forth effective treatments as soon as possible. This is not targeted at day to day Living with mnd Research which will continue to be funded via standard research funding.

    I have reiterated that any issues with this forum and other matters you have with the MNDA you raise directly with the MNDA.

    I am sorry that I appear to be confusing you but others are asking for detail.

    With regards to your issues we are not making any headway discussing here, so please raise directly and I will not comment further.

    I will only comment on the new proposals capability intentions.

    Lee





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  • Graham
    replied
    I am not the only one being confused by your communication. Assume that people, including me, don't read or try to comprehend the minutia of your links for your project.

    When is your project expected to start?

    What can we expect from your project during the course of 2022?

    It sounds like it would be straightforward for this forum to have a predictive text plug-in? Please have a word with your mates at the MNDA. I and others struggle terribly.

    Leave a comment:


  • Onein300
    replied
    Originally posted by billy106 View Post
    I apologise for getting personal . But I still remember my Consultant telling me Billy the problem with MND . There is not enough people with it for Big Pharma to Pursue a treatment of any Kind. I get the impression theres no money in it for them. Someone tell me Different.
    Billy,

    Don’t worry I have an extremely thick skin!!

    With regards to the lack of pharma interest.

    That could have been the case 20 years ago yes. But the world is a different place for many reasons that are far too numerous to summarise here.

    They are very interested now, but also don’t assume pharma of the future will have the same business model or be the same size

    Items like genomic sequencing and analysis are beginning so cheap that personalised medicine is very real. Gene therapies will be most likely the mechanism of delivery for many treatments even for so called sporadic mnd.

    Patents expiring for other disease drugs and the fact that neurodegenerative disease is now growing to be the main killer and serious long term chronic disease will all drive pharma to be interested.

    But remember discoveries and advances are most often found/made outside of big pharma by universities etc.

    Also any treatment for mnd is likely to be life long. As mnd is mathematically as likely as MS but there are only 5000 alive because of its lethalness the numbers that will be living with it will rise dramatically if a slowing treatment is found. MS doesn’t kill and there are 200,000 living with MS in the U.K!

    There most definitely is a market and treatments for some versions are very close.

    Technology is the changing business model.

    It is often good to compare with other technology to get a feel for why things will change.

    15 years ago to build a website with commerce systems etc etc in with payments cost 100s of thousands of pounds and took many skilled people.

    In 2021 I can build all of that in my own for pounds and even on a small tablet etc.

    Lee

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  • billy106
    replied
    I apologise for getting personal . But I still remember my Consultant telling me Billy the problem with MND . There is not enough people with it for Big Pharma to Pursue a treatment of any Kind. I get the impression theres no money in it for them. Someone tell me Different.

    Leave a comment:


  • Onein300
    replied
    Graham,

    You appear to have misunderstood the campaign and the new funding commitment. I hope the following helps.

    This is a ‘government’ commitment to a major investment/national endeavour to accelerate ‘translational’ MND research.

    The money is NOT going to any MND charity, including the MNDA.

    Its a new endeavour. The charities will continue to fund research as well and will also endeavour, we hope, to contribute to the new ‘institute’.

    The governance is yet to be agreed and the government will not issue a penny unless peer reviewed and controlled. You can read about the evolution of the new MND Unit here.

    https://www.gov.uk/government/news/g...sease-research

    And to be clear, I have MND and do not work for any charity. I am just a patient who wanted to lobby government to fund our cause more in the light of the government contribution being so low.

    This is a patient driven campaign that is evolving

    The funds will not simply be eaten up by any project. This is nothing to do with mnd Smart aside that mnd Smart may be a part of the integration. This is much wider.

    The funds will not be used for anything other than the translational project(s) and infrastructure proposed within…

    https://patientsunited2endmnd.files....sion-final.pdf

    I hope this has resolved any issues you might have with the government intended funding.

    Lee

    Leave a comment:

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