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scotslassie

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Just getting ready for the fundraising event here and also just been told that the head man for MND Assoc here in Britain is getting £140,000 per year plus a car.
Totally pole-axed. Surely this is not true? Does this mean our fund raising will just about pay for his car service? I now do not want the money raised going direct to MND Assoc.
I'd rather it was kept in account and used for the person we are raising this money for. In time she will need aids. I dont want this money going towards this man who, in my eyes, is being paid an obscene amount of money. I appreciate that wages have to be paid but - £140,000 per year? and that's just the one employee. That is on par with our Prime Ministers wage! Unbelieveable. Does anyone on this forum know any facts? I have the website address to check and will do so when I come back. I remember when my aunt was diagnosed, the MND nurse told me to put in for everything she may need now as it can take months for anything to come through. Sadly, she has now passed and now another young woman we know has been diagnosed. I want her to benefit from the fund raising now taking place - Not some guy with a merc. Or am I being unfair?
I appreciate that research has to be funded but just what percentage of the money raised is actually going towards this research? Sorry for the rant but this just p***** me off.
 
Re: surely not!

Yeah, it burns me too. I guess if you want someone good and smart to watch over things you have to pay. At least that's what I'm told. Yes, it burns me too.
 
Re: surely not!

You should be able to check out their tax returns or financial disclosures so you can see where the money goes.
How about checking into doing a private fundraiser to benefit a PALS directly. I know some here in the US set up a foundation or special account to benefit their loved one.
 
Re: surely not!

wee scots lassie...am surprised that your surprised...dont you know we live in rip off britain....everybody is filling there boots....and have been for donkeys years...i dont give anymore...sad init...........i read somewhere that only 3 pence in the pound goes to the needy......makes you wanna throw up......you have spoilt me night now, am angry again.........not with you of course...........i need a wee dram....god bless, johnny
 
Re: surely not!

I like Deb's idea of setting up a fund for the pALS.

It's shocking isn't it?
 
Re: surely not!

Stu has his foundation that pays no salaries and he has helped folks all over the world
 
Re: surely not!

Can imagine your anger! If true that has to be stopped! And maybe you should contact the BBC or another UK TV Channel, so they can research it and make public if true!
 
Re: surely not!

the bbc....the bbc....the bbc.......blimey , they are one of the rip off merchants....tax payer funded you see.....gold plated toilet seats......by courtesy of the tax payer...i could go on...but am going to bed instead............johnny
 
Re: surely not!

the bbc....the bbc....the bbc.......blimey , they are one of the rip off merchants....tax payer funded you see.....gold plated toilet seats......by courtesy of the tax payer...i could go on...but am going to bed instead............johnny

Johny: sleep well, i'm Dutch and only know BBC ;) but there must be a channel that is good! :)
 
Re: surely not!

You would think so Anja but I'm afraid they all are in the same bed. ALS Guardian Angels is a wonderful non profit, giving, wonderful, honest organization that will help anyone with ALS with just about anything! Stu recently had to shut down for awhile due to someone being dishonest if I'm not mistaken (Saidiemae, correct me if I'm wrong) and a kind soul made a donation to enable them to be back in service. If you are looking for a truly honest and trusty worthy organization that truly helps people who's lived are touched by ALS to make life easier to donate funds and equipment to, contact Stu at ALS Guardian Angels.
 
Re: surely not!

Ha Ha Johnnyliverpool. The BBC indeed eh? The last people I would go to...sorry Anja :) x Just back from the fundraiser and there was a great turnout for a wee town - over 200 people. I'd rather the money went to the NHS here. They are the ones who really deserve every penny. They provided an excellent service for my aunt when she needed it most. She attended the Neurological Sciences Institute at the Southern General Hospital in Glasgow and couldn't fault them on anything. Neither could I, and that's saying something. We can knock the NHS all we want but at the end of the day we have top consultants and doctors, nurses, physios, speech therapists, nutritionists, medications etc on hand and all free. Even all prescriptions, no matter what age, (in Scotland) are free. My aunt had Riluzole delivered to her house every week by courier, care workers visiting daily, district nurse visits, doctors visits, home aids and eventually 24 hour care in a nursing home with her own en-suite room, all free. I say we give all money raised directly to the NHS and cut out the Charities because at the end of the day it's the NHS who step in and take over anyway. Sorry, this is a UK type rant........
 
Re: surely not!

Hey Scots Lassie - My husband raised thousands for MND and what we did was donate it all to our local area branch which is run by volunteers so that all the money in their funds directly get paid to a PALS in the area for specific equipment needs. He also raised a lot of money for our local hospice.
 
Re: surely not!

And the charities wonder why we will not fund them, they are a waste of time any way unless you've the proceeds from a sale of your house to leave them (its posted online)
 
Re: surely not!

There are currently reported two directors too? They are a waste of time unless you have a lot of cash that you are prepared to leave them, this is proven

They boast they are there to help people die with dignity, yes people with cash, every one else is classed as a trouble maker



I had wrote a letter to the press and also sent it off to the housing, and I asked the local North East MND support worker to support myself as every disabled person in the North East with housing. She foolishly then sent the letter to myself in error?

That support worker sent a letter to her senior painting me out as a trouble maker and effectively wiping her hands of me. Yet the charity is said to be there empowering people with MND to achieve the highest quality of life possible and to die with dignity

I am dying from Motor Neurone Disease and Common Obstructive Pulmonary Disease too

The MND association said it was typed in error and they are doing nothing other than apologise to me (yes like I was born yesterday too) will let you all know in time, as it’s no good having a back stabber working as spokesperson for folk who are dying?

How many other families is this person causing trouble for, she is not empathetic to the fact I am dying and being bullied by a local council as also a terrible prime minister, and obviously feels that folk with any disability should not as do not deserve any help at all

This is her letter, and I am now so fed up of life of all the knocks and kicks that “everyone gives you when you are down” solely for sticking up for your disability, I AM dying for God’s sake and my situation (NOT CREATED BY MYSELF) did not warrant the below response sent to her supervisor

(Quote)

Please see the email from this man with MND below. I've been trying to support him with his housing situation for the last month - soon after his diagnosis. I've spoken to Newcastle housing depart and written to North Tyneside but he has been very difficult taking out litigation and complaints against them. He refuses to work with the systems or accept advice and instead gets aggressive threatening legal action so alienates himself. His housing situation is terrible with very poor access and he really needs rehousing as his mobility is deteriorating.

He is increasingly contacting the Assoc and very active on the on-line forum. He spoke to Liz (MND Connect) yesterday and I think this may increase. He is a difficult personality and quick to criticise. I just thought you needed to be aware of the situation but don't really think there is anything more that we can do.

(End Quote)

(Why would the contact with the organisation now increase I have only contacted them three or four times in all since June 2011, plus it is not nice being told help is there but it is not to be used by the sufferers needing that help it seems she does not wish us to use the MND help line either. In time to come I will not be able to talk let alone type and this harsh criticism is from someone employed to help and aid folk like me.

Indeed who needs enemies with friends like this working for registered charities said to be there to help folk who are dying?

This pre judgmental criticism is harsh and unfounded and is from someone employed and paid to help and aid folk who are dying from an illness to which there is no cure, someone quite clearly untrained as unfit and unable to do the given job or to relate to the actual disease and the disability.

No one asked for this persons help other than to get North Tyneside Council “to understand that sadly folk with MND are indeed terminally ill as are Cancer sufferers too” which I have since managed alone without any one's help, in this criticism it is also saying I effectively had no right to contact the minister for disability either. Oddly enough she too refused to comment or respond or offer any beneficial advice

The MND association globally are a first rate charity, why they want to entertain paid workers like this workers clearly determined to destroy their credibility and aim is a shock and a disgrace to every MND terminally ill person as family across the globe at the same time she was working with someone exactly the same as me except he had a house he needed to sell and she wrote him a blazing glorious letter of praise


Which jusy goes to show the greed of them as an organisation
 
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Re: surely not!

Thank you, everyone, for your comments. Some interesting stuff there, I suppose I'll get more clued up as I go along.
Best wishes to you all.
 
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