Transparency of Money Given to Members

[Banned]

Hi MNDA Admin,

Where can I find an inventory of all money given to members?

I look forward to your cooperation.

[MNDConnect]

Hi Graham. We are assuming that when you say ‘money to members’ you are referring to the grants we offer to pwMND, their families and carers? Whilst we cannot share specific details as this would breach confidentiality, we do share the overall value of grants in our annual accounts. In 2020 our grants paid to individuals was £1.413m. Our 2020 accounts are available on our website, with our 2021 accounts being released in June once they have been approved at our Annual General Meeting.

You can find our reports on our website here https://www.mndassociation.org/about...nnual-reports/

Best Wishes

Rachel
MND Connect Adviser

[Banned]

When I recently received my grant, I was advised that it was delayed because of fairness.

In over 12 years of being a member, I have only received 2 grants at less than £100/year of membership.

Please can the mean grant now be published along with the highest grant awarded?

Does research qualify as a grant? The reason I ask is that a MNDA Trustee recently received preferential treatment on the NHS, I presume?

Lee Millard asked that I should investigate governance at the MNDA for the sake of the new Government money.

[MNDConnect]

Hi Graham,

We do have information on the grants available and maximum grant values allocated. This can be found at https://www.mndassociation.org/app/u...chart-2020.pdf. I’m afraid we do not have the mean grant figure publicly available.

Our grants remain available for any member to apply for and more details are available at https://www.mndassociation.org/suppo...ople-with-mnd/

I can confirm that grants awarded for research are administered through a completely separate process to our care grants.

With regards the investment of £50m into MND research committed by the Government, this will not be allocated directly to the MND Association. The coalition presented a framework to the Government as part of the bid within the Government Spending Review. This covers drug discovery and development, clinical research to understand the disease and the infrastructure to conduct more drug trials.

I’m afraid I cannot comment on your point regarding a trustee and the NHS. We do not have any influence of the decisions made by the NHS to provide care or treatment.

With regards to the 2 grants that we provided to you in November, we received a high amount of grant applications during November, as is common in the lead up to Christmas. Whilst we try to process applications within 10 working days of receiving them, this is not a guaranteed timescale and can take longer due to the volume of applications that we receive. Your application was processed within 15 working days of my submitting them on your behalf.

Best Wishes

Rachel
MND Connect Adviser

[Onein300]

Mnd connect and Graham.

I have only just seen this post thread.

Graham can you please correct the statement you state about myself re suggesting investigating MNDA for governance.

I said NO SUCH thing and you very well know it!

You made comments on my information post on the wonderful coalition of the MNDA, MND Scotland, my names Doddie foundation, patients and leading researchers that led to the recent £50m commitment to an mnd Research institute.

You then made a comment about governance of the new funds and I explained that it was not going to the MNDA and was a wholly new venture/endeavour. It is all going to Research directly.

You then proceeded to raise some private matters that you had with the MNDA regarding governance.

I made no comment and suggested you discuss directly with the MNDA.

Graham, please correct your statement as it implies that in some way I am in dispute with the MNDA. I am not and fully support their wonderful work.

Lee Millard

[JAC]

it grieves me to read this. finally summoning up the courage to visit the forum for the first time in months, and this isn't what i was hoping for.

just saying....

[Ellie]

JAC I'm so sorry this is what you're faced with having "finally summoning up the courage to visit the forum for the first time in months" - it's unpalatable to us all.

There is so much love, camardarie, support, help and advice evident every day on this forum, against which I hope you can judge the forum's real worth.

Love Ellie.

[richard]

JAC Please don’t be put off, there is so much of value, education and fun on this forum, as well as tears and sadness. Please stay.

Richard

[Onein300]

Absolutely you and everyone should be reading good news!!

And there is great news with the £50m commitment of new funds from the U.K. government on targeted mnd Research.

To put the money into perspective the ice bucket challenge raised £7m in the U.K. in 2014 and about £6m was allocated to research over the following 5 years.

This funding promise from the U.K. government was only made possible by the incredible synergy and support of the MNDA, mnd scotland and My Name5 Doddie Foundation along with patients and the leading researchers this coalition

This is the equivalent of 7 ice bucket challenges!!

The funding will be developed by a new model directly to a 5 year research work plan focused on accelerating treatments and making the U.K. attractive for pharma investment.

it is important to note that this funding is in addition to any grants made to researchers by the charities and any direct research applications to government funding councils.

You can keep up to date on the campaign on the charity websites but also on the patients site:

http://patientsunited2endmnd.org

very best wishes all
Lee

[Banned]

I know exactly what you said Lee Millard.

You said good governance was an essential part of the extra money and you were not going to do anything about it.

So here I am, doing something about it!

[Onein300]

Graham,

Oh dear, I said no such thing.

You expressed issues and experiences with the MNDA on totally different subjects and I merely suggested you raised directly with the MNDA as they were personal to you.

You were then getting confused with thinking the £50m new investment was going to be controlled by the MNDA.

It is not. It will be a new entity, with the researchers and a governance board dedicated to it.

We have stated clearly the principles of the funding here:

https://patientsunited2endmnd.org/2021/12/02/funding-principles/

and you can see the latest progress here:

https://patientsunited2endmnd.org/2022/02/07/status-update/

Further you can read more about the NiHR unit and the partnership with LifeArc here

https://www.gov.uk/government/news/government-to-invest-375-million-in-neurodegenerative-disease-research

This is a major cause for celebrating and you should be welcoming this with open arms.

Is this not a great thing to be part of for our community?

The coalition will continue to update our community and our (and certainly mine) major focus is ensuring the U.K. government sticks to its promise of the funding commitment.

Please follow http://patientsunited2endmnd.org

for updates

Best wishes everyone

Lee

[Banned]

It would be travesty if we did not do the work to ensure good governance.

I have waited 15 long years.

It is public money for a Noble cause.