View Full Version : Robbed...

13th September 2012, 10:20
Do I have your attention? Good - this is a bit of a rant...

So, how do those of you feel who have MND? Do you feel robbed of your health, your future, your life?

I expect the answer will be a resounding 'YES'!

Heres what I dont understand....why o why do the MNDA sent out 4 pages or more of glossy, high end begging letters, pretending to be about research? Why target those who are already robbed of their health, why target 'their own'?? If they had saved the money spent on the letters and put it to better use (research) or used it to raise awareness elsewhere, I believe it would have been money better spent.

Do those in the higher eschelons of the MNDA not know how much of a struggle it is financially, emotionally, physically to deal with MND without falling foul of their emotional blackmail?

Am I the only one to feel this way? :mad:

13th September 2012, 10:32
Hi catkin,

Never understood it myself, and glad I am not on my own, like you I think the money spent on the annual bash and various meetings held all over the country may do some good, but I would rather be cured than talk about what might be? I guess Robyn would have an answer for you no doubt.

All the best

13th September 2012, 17:23

I too am gobsmacked that 'we' those with MND are contributing to something we are suffering from...the expense of the glossy four colour literature not to mention the cost of postage etc. We managed to raise 866 from a fundraising event and my justgiving page with more donations still to come. I may add not supported or attended by anyone from our local MNDA group :( sad...
I hope that the money we raised is spent on someone less fortunate that I and can really make a difference and not just end up in the bin, which is probably where most junk mail ends up...perhaps targeting others than those with mnd or taking a large advert would be more beneficial....rant almost over!
seems like i'm feeling rather disgruntled today as i sent this email today:
I emailed this today...
General secretary of the police federation,

I have been urged to contact you regarding the changes to our pensions.

Unfortunately, in February this year I was diagnosed with a rare form of Motor Neurone Disease, (Kennedy's disease). I returned to work to find that not only am I struggling to maintain my career and fight against the tide of "ill health retirement" I face a
n uncertain future financially with regards to my pension.

I have a condition which cannot be treated and has no cure and use a wheelchair to preserve my strength and stamina. Imagine the fact that your life, home, work and future is uncertain and compounded with an uncertain pension. No one can tell me exactly what my pension after 7 and half years service is actually worth and if forced to take ill health retirement I cannot claim a penny from the state in benefits based on my current pension value.

I sat almost in tears with a Adult Social Worker Benefits advisor for over 2 hours in my home almost a month ago and quote, "Sorry I am a bit like the grim reaper I have nothing good to offer you." This is because I would have a small pension 890 based on today's figures and my wife earning of 1,100 a month. I am therefore, not eligible for any benefits yet expected to pay all my bills, mortgage and outgoings with a small pension.

I urge you to put yourself in my shoes for one minute my situation could happen to any officer, any rank, any sex. I have always supported the Police Federation but feel that the Police Federation has not fought our corner. I have served this country in the Armed Forces, Prison officer and Police Service giving almost two decades service yet I am let down in my hour of need.


Robyn Copley-Hirst
13th September 2012, 17:29
Hi Catkin & Pete,

Thank you for your thoughts on this - they are always welcome. I saw your questions this morning but just wanted to get the most up to date information for you both. We can't use a single fundraising strategy that suits everyone but we have put together a bit of an explanation on all of the ways we fundraise, why, and how successful the money we spend on fundraising is.

I hope this answers a few of your questions - and provides you with the details to opt out of these letters if anyone wishes.

Best Regards,
__________________________________________________ __________________________________

The Association does all it can to improve standards of care, support people living with MND, and fund and promote research. Last financial year the money directly spent for the benefit of people living with MND was 11.9 million - of this 8.4 million was spent on care and 3.5 million on research. At the start of 2012 we were supporting over 45 research projects.

We apply for funding through Trusts and Foundations, use large organizations for sponsorship, and raise awareness through the media and our patrons/ambassadors as much as possible. We also work in partnership with other research funders, combining financial and intellectual resource to focus on the common goal of defeating MND. Every 1 committed by the MND Association in this way helps leverage another 2-3 in partnership research funding.

However, the Association is also very reliant on voluntary donations to do this work which means we do need to ask our supporters for their help. The generosity of our members and supporters last year accounted for 6.8 million – a tremendous amount that is very much appreciated by everyone at the MND Association. We are also very mindful of keeping our costs as low as possible and being as efficient as possible – last year every 1 we spent on fundraising we generated 3.60 in return.

The majority of responses to our appeals do come from our members and supporters who have been directly or indirectly affected by MND. Many of them are living with the disease and welcome such a letter and feel it gives them a chance to fight back. However, we do understand and respect that some people don't share this view and prefer not to receive this kind of letter, which is why anyone can opt-out of receiving our mailings at anytime by phoning or writing to our fundraising team. If you no longer wish to be included in our future appeal mailings, please do phone our fundraising team on 0845 6044295 or email us at fundraising@mndassociation.org

Robyn Copley-Hirst
13th September 2012, 17:35

That is a fantastic ammount of money to raise! Remember that you can specify where you would like your money raised to go - some people specify if they wish their money to go only on Research for example.

I hope that helps,


13th September 2012, 20:29
Hi Robyn,

Just to thank you for getting back, I see from your post the return is more than worth the mailings , With out knowing this ,like so many other things now we see ads on the TV to save everything and for your donations they seem to think sending you pictures and letters from the adopted animal or what ever makes sense ,for me all i want to know is the money raised on who's behalf, actually does some good for the person/animal who you wanted in some small way to help, sending pictures and letters cost so why do it ,spend the money on what it was raised for .


15th September 2012, 14:27
Think the MNDA missed a golden opportunity here....


Shame but the MS Society are looking for votes.....

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