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jadedjohn
14th December 2010, 17:27
i have just watched the NSPCC advert and very moving it is too. showing lots of little children that are being neglected, just asking for a donation of 2.

i know Sarah on here was involved with a TV ad which was banned. But why does the mnda not do another softer one?

in preperation for trying to get my company to sponser the mnda i looked at thier profit/loss accounts, and only 22% of the money goes to research - surely most of the money should go to developing a cure for this terrible disease - a palty 3m goes to research.

John

Merry Maid
14th December 2010, 19:24
john the mnda was set up to help people like me and you and i understand your reason for posting this but they just have not got the funds fto create a prime time tv ad i thought sarahs story was a good opportunity wasted as i did not rate it the best form of awareness even though it raised awareness of a banned ad that was it not actual fund raising awareness to show the benefit of donated money for further research into finding a cure i thank sarah for what she did but a opportunity missed at the time and never to be repeated i hope in future by the mnda

mm

jadedjohn
14th December 2010, 20:31
yes i understand, i just find it frustrating, when there seems to be TV ads for every charity under the sun!

and why on earth is the MNDA funding research anyway - is'nt that what we have all paid our taxes for!

With 3m being spent on developing a cure i very much doubt a cure will ever be found.

John

Robyn Copley-Hirst
14th December 2010, 21:32
Hi John,

The main aim of the MND Association is to see a world without MND, although research is one of the main aims we also set out to aid people affected by MND currently. We provide support and many services and the figure you quote above should be viewed in the context of the overall financial situation. At the bottom I'll link anyone interested in viewing our financial statement for 2010.

This report includes details on where our money is going, what it's doing and how this fits into the overal aims and strategy. All the files are available to download as PDF's and reading them shows very clearly where our money goes.

I understand John's frustration in wanting more to be done - I think we can all agree that we would all like more to be done. But we have to look at the overall situation and not view things in isolation. Last year (2010) we spent 3,891,985 on Care & Research Grants, and a further 860,039 on Research development. If anyone wishes to take a look it also shows what other areas the association spends its money on...care development and spending money to generate funds to name a few.

The page you can find all of these documents, and the 2010 financial statement I'm referring to and I think John is referring to:

Here (http://www.mndassociation.org/about_us/a_world_free_of.html)

I hope this helps put things into context for everyone.

Regards,

Robyn

Merry Maid
15th December 2010, 08:08
can i ask how the new campaign is going as its not very visible in the public eye and seems to me very subdued which is not patricks fault as he trying but it seems there is lack of support for this i do not know where to view this other than facebook and patricks own blogs

mm

computatec
15th December 2010, 23:53
Hi John

We have to face the fact that we suffer from a very rare disease, so our numbers a very small in relation to other more common diseases. The downside of this is that the potential market for a drug is so small that it is not financially viable for the pharmaceutical companys to fund research into MND. Research has to be paid for, it is never free.

A further problem is the fact that it is not possible to prove if any treatment has extended life or not. MND is not like other diseases where the cause can be found in a path lab and the cure can be seen to work by further lab work. All we have are conclusions based on statistical analysis from very small samples. With only around 5000 patients spread out all over the UK, all in different stages of the disease from just diagnosed to terminal, it is amazing that so much has been found out to date.

Robyn Copley-Hirst
16th December 2010, 14:57
can i ask how the new campaign is going as its not very visible in the public eye and seems to me very subdued which is not patricks fault as he trying but it seems there is lack of support for this i do not know where to view this other than facebook and patricks own blogs

mm

Hi MM,

Thanks for your interest in the campaign. You are right, it is a very different sort of campaign this year... Sarah's Story was very much centred around the advert and Patrick's is a more 'viral' internet/ video/ blog lead campaign. Partly this is down to cost, and partly down to reaching people in different ways. What will reach one audience may not reach another.

In terms of what the MND Association has done for Patrick's campaign this year we have added Patrick's 100 Portraits info and link to our homepage. This has been live since June when the campaign launched.

Our Thumbprint magazine has carried a double page spread in every edition since the campaign began as well as every edition of our newsletter carrying details. This newsletter can then be used by branches to use on their own websites etc.

We produced billboard posters this year nationwide as well as A4 versions for people to copy and distribute to raise awareness. We produced more posters this year than for Sarah's Story.

We've sent out almost 10, 000 business cards with details of the campaign on, these can go to anyone from branch leaders to professionals to further their awareness.

We also help moderate Patrick's blog, sort out media things as well as running ads in the Mail on Sunday and Daily Mail as we had received some free advertising.

We've produced a few films of Patrick's. One of which is on the homepage and another which is almost ready to distribute. This second film will be used by anyone wishing to use an individual's story and how MND has affected them... or anyone wishing to show Patrick's campaign and ideas.

I hope this answers your query, MM.

rog
26th December 2010, 20:35
Hi John

We have to face the fact that we suffer from a very rare disease, so our numbers a very small in relation to other more common diseases. The downside of this is that the potential market for a drug is so small that it is not financially viable for the pharmaceutical companys to fund research into MND. Research has to be paid for, it is never free.

A further problem is the fact that it is not possible to prove if any treatment has extended life or not. MND is not like other diseases where the cause can be found in a path lab and the cure can be seen to work by further lab work. All we have are conclusions based on statistical analysis from very small samples. With only around 5000 patients spread out all over the UK, all in different stages of the disease from just diagnosed to terminal, it is amazing that so much has been found out to date.

I have to say that having heard the figure of One Billion Pounds a year being spent on assisting people living with MND, combined with the benefits research will bring for other neurological conditions, that it seems to me, more money spent on research by the UK government would be a sound investment, even if it were only considered from a financial perspective - regardless of the number of individuals concerned.

sarahezekiel
28th December 2010, 13:09
I agree rog. I can't see this government investing any more money in research. I suspect they'll cut what we do have, they're cutting everything else.

Sarah

Batty
28th December 2010, 17:00
I was very interested to read MM's comments on the latest awareness campaign, a lot of people I know do ask me about it - most seem to have seen the billboard posters at railway stations.

With no disrespect to Patrick, as previously in other campaigns by always focusing only on one victim of this terrible disease I feel inadequate attention is being paid to the amount of young and getting younger, physically fit and active, and otherwise healthy men and women that are being diagnosed with MND now opposed to its perception of it affecting mainly men in their advancing years. If asked I would imagine that in general anyone not having a personal link with MND would be able to name maybe a handful of those that have been affected - possibly Stephen Hawking, Diane Pritty, David Niven, or campaigns such as John's Journey, Sarah's Story, and Patrick the Optimist.

So, how about we form an optimistic club/group and campaign together at public events etc? Just a thought but we want awareness drawn to MND therefore shouldn't it be us that generates it? What better adverts and incentives can there be?

What do you think Patrick?

Regards,

Mark

SGD
28th December 2010, 17:52
Interesting how the medium is changing. "Shared" Patricks' status and videos with my facebook friends and got a lot of comment and awareness - sent out a mail shot of 100 tailored letters and am yet to receive a reply.
Recently gave a talk about mnd at a breakfast club (scary - I'm not exactly a public speaker) and it was interesting that the male "mature" audience has the great actor David Niven as their point of reference.
Also interesting was the number of questions about stem cell research. At our fundraiser, facebook was excellent at drawing people to the event and for reminding (and reminding again) in a way that isn't possible in any way. Should also say that school newsletters and Church magazine are also useful

Jenni
28th December 2010, 23:58
I'd have to agree with SGD's point about Facebook being an excellent way of getting attention for fundraising. I have a Facebook page for my upcoming Firewalk, and was recently contacted by someone on Facebook who has recently been diagnosed and was looking at ways of raising awareness and stumbled across my page. I was happy to pass on some contact details to them, and also a couple of other people joined who I don't even know.
I think we are in an age where spreading information about fundraising events, and charities themselves, has never been easier. With social networking sites and also sites such as JustGiving where you can donate easily, quickly and even anonymously, it makes causes more accessible. Also, the internet has ensured that little known diseases such as MND can be 'looked into' before people do donate.

SGD
29th December 2010, 11:33
Thanks Jenni - totally agree with your point about people using the internet to " do the research" before making a donation - perhaps a "Thumbprint lite" or separate leaflet/insert could be sent out/otherwise distributed at branch level to outline the aspirations of the mnda and how to donate. People often ask the question along the line of "What is the problem that this is the solution to". Impossible to know how many of the letters/leaflets we send out are opened...read....or thrown in the bin

patrick joyce
29th December 2010, 18:49
Hi Guys,

Its been really interesting reading your comments about the campaign. I understand all your frustration with the lack of a high profile tv campaign, and also, to a certain extent, with your disappointment with the level of publicity we have achieved so far this year.

Before I started this I shared all your opinions, but being intimately involved has opened my eyes to just how hard this really is. We have had articles in the Sunday Times, the Mail, the Sun, The Big Issue, several magazines as well as an interview on the world service, and one coming up on radio 4 on new years day. We have sweated blood to achieve what we have achieved, both myself and the team at the MND association. But we need more, always more.

The problem is money. TV advertising costs millions. Literally. The MND association's campaign budget is tiny, so we are being creative with what we have. I think the basic strategy is sound, an internet based campaign is cost effective and has vast potential if it catches peoples imaginations.

All of you people care deeply about this, so here is how you can help. Give us your ideas. This campaign is not over yet, and there will be many more in years to come. How can we make this one more eyecatching and what could they do in years to come? Quirky ideas, amusing, sad, inspirational ideas. This is not my campaign, it is ours, and we can make a difference.

Patrick

Jenni
30th December 2010, 00:00
Hi Patrick,
A few months ago, my partner and I had taken a trip down to London (passing through on the way to Essex to visit my family) and we saw one of your posters in the London Underground. It was massive, and people had no choice but to see it, and I was glad for the message to be there right in people's faces.
I didn't know much about the disease before my partners mum was diagnosed other than the most obvious parts; that it was horrendous and fatal. I think its massively important for people like yourself to be willing to put their stories out there and to help increase awareness of MND, and to give both the campaign and the disease a human face. I do think that change is possible if we all work together.

Jenni

SGD
30th December 2010, 10:55
Thanks Patrick, puts things into perspective.
Enjoy the "knocking on doors" side as much as I like the social networking side. Gave out a lot of Thumprint magazines as well as directing people to the on line version. Word of mouth and networking with personal contacts all help. Patricks' campaign succeeds in that it puts a human face to a disease we may have put our own "label" to
Whilst at the Airport doing my advertising role, found J C Decaux at Sale Place, London very useful at bus and static advertising

Jacqui Priestley
30th December 2010, 14:56
I'm up for it! I was appalled when I reviewed the MND accounts that only 300,000 was raised from corporates. Just think how much Boots/Tescos etc raise for cancer. There must be a way of us pulling our resources together to try & raise more from the "Big Boys". What about links with our former employers? I'm trying to persuade mine to nominate MND Scotland as the chosen charity for next year.

SGD
30th December 2010, 15:23
That's great Mrs P - please let us know how it goes. With the perception that the public has for companies becoming even more important, hope we'll see more companies helping (and being seen to be helping) their community. Great believer in the 80/20 rule or Pareto principle - a shop makes 80% of it's profits from 20% of it's customers. Of course every donation is important and a recent survey shows that the less well off give a higher proportion of their disposable income to charity than other groups. So any millionaires in the Luton area...please contact me at the usual address!

Jacqui Priestley
30th December 2010, 15:23
Sorry guys - my first response was to the thread on Page 1 - didn't realise there was so much more. Anyway, we're trying to do what we can on our own, by using our network of friends to raise funds eg running New York marathon, corporate Golf days, charity cricket matches, parachute jumps, longs walks. We've set ourselves a target of 50,000 for 2011, but it strikes me that we could do so much more if we joined forces to fundraise. Andrew & I have a business card now with "we support the MND Association" which we hand out when we can. I also think I missed a trick not sending out the MNDA events calendar with the Christmas cards. Might try & get my hands on a load and do a mail dump. May try & talk to local school in the New Year, although speech is difficult. Was also wondering about employing a PA for a few hours a week to help with fundraising organisation and general chivying - lots of arm twisting required & very, very tiring!!. We raised 44,000 last year but that was first year of diagnosis. This year will be more difficult.

SGD
30th December 2010, 15:27
that is a fantastic amount - congratulations. Notice that charities often get a lot of PR opportunities by commissioning or undertaking a survey, then their spokesperson does the rounds of Breakfast telly. news etc explaining the findings.

computatec
31st December 2010, 16:49
Hi John

The cost of television advertising is enormous, especially at Prime Time, so I think that MNDA money is better spent on funding research. I have also noticed the vast number of charities advertising on TV and I am highly suspicious that some of them are nothing more than big businesses masquerading as charities. I know that is a very cynical point of view, but where do they get the vast sums necessary to advertise on TV? I remember a well known animal charity being looked into and only 20 P of every pound actually went to the animals.

Jenni
31st December 2010, 19:19
Hi Mrs P,

Firstly, congratulations on raising 44,000 last year, that's amazing. I've set myself a smaller target of 5,000 for 2011 and anything over that will be a bonus. My partner and I, plus a couple of MNDA volunteers raised just shy of 2,000 in October running a cloakroom at a Beer Festival in Birmingham and it really gave me a taste for fund-raising. It was hard work because of people's lack of knowledge about MND but it was one of the best things I've ever done.
I was meant to be doing a Fire-Walk in September last year, but it was postponed due to a lack of volunteers. It was postponed until November, and then again until March 2011, so if any of you know anyone who would like to sign up, please let me know and I will give you all the details of wonderful MNDA worker who has been arranging it.
I have recently agreed to join my local fund-raising committee and am bursting with ideas at the moment, I've literally got a big cardboard box of ideas and (because I'm such a nerd) have started a database of useful contacts and people who I intend to contact in regards to organising some events next year.

Countyboy
31st December 2010, 21:57
Hi Everyone, Happy New Year to All.
I think it time we started looking at why some people diagnosed with MND Live much longer than others. Take me for an example, I was diagnosed 13 years ago last September but, I had unknowingly been showing symptoms of the disease for ten years before diagnosis. Perhaps if more time and resources were spent looking at those like myself clues may be found that would lead to more PALs living longer. As for myself, all I can claim is spending up to 12hrs each day working on some project or another. At the moment I am trying to write a fantasy novel and have passed through the 70,000 word barrier. Now I'm not claiming what I do helps me live longer but, I can say it pushes MND out of my mind while I'm working. This has a bonus, and that is my wife who is my only carer does not worry about me because she knows I am happy doing what I do.

Please think about my suggestion, who knows what may be found.

Best wishes to everyone,

CB.

rog
2nd January 2011, 00:07
Before I started this I shared all your opinions, but being intimately involved has opened my eyes to just how hard this really is. We have had articles in the Sunday Times, the Mail, the Sun, The Big Issue, several magazines as well as an interview on the world service, and one coming up on radio 4 on new years day. We have sweated blood to achieve what we have achieved, both myself and the team at the MND association. But we need more, always more.

Have you tried getting on http://www.channel4.com/programmes/4thoughttv ? I know that the MNDA has addressed contentious issues in the past and as this program provides a platform for ethical questions it might be an avenue to get a message across and raise general awareness of MND.

Bonneville Girl
2nd January 2011, 01:03
Hi all,
I'm new to the forum though reading lots of comments so far gather that all are welcome to give their thoughts and ten penworth here.
Well, my dad was very recently diagnosed ALS/MND and I suppose I knew that it was coming due to his progression of symptoms over the summer months, despite surgery to remove compression.

Well, here is the real reason for my post - we all know advertising is expensive. In the past I've encouraged joint working between students and the business world/3rd sector/public sector to produce adverts, videos and the like. Why, this gives the students something 'real-life' to work with and raises awareness locally too. I see it as a win win all round. So, what about it?

Here's to a bright future...............

patrick joyce
3rd January 2011, 11:22
Producing the adverts isn't the problem. It is the advertising airtime that is the expensive bit, and they don't give that away for free, no matter how nicely you ask...

Countyboy
3rd January 2011, 13:36
Hi Patrick, I hope you enjoyed Christmas and the New Year. There are programmes on BBC TV and Radio regional area's that might be available for topics like MND to be raised on. I made a programme some time ago that was broadcast on BBC Wales TV's "Week In Week Out". The BBC Wales team behind the programme contacted me after a research worker found comment I had made about "The Mental Capacity Act" on The Build-UK MND Forum. Perhaps if advances were made to the BBC regions free air time would be made available for programmes on MND to be made and shown. The programme I was in, even filmed me being taken for my peg tube to be fitted, and filmed an interview with me shortly after returning to the ward with my new peg tube.

Maybe we should contact these programmes ourselves and advocate the good programmes of this type can generate through increased public knowledge. Come on MND Association let us know your thoughts on this.

Best Wishes,

CB.

Robyn Copley-Hirst
4th January 2011, 11:36
Maybe we should contact these programmes ourselves and advocate the good programmes of this type can generate through increased public knowledge. Come on MND Association let us know your thoughts on this.

Best Wishes,

CB.

Hi CB,

The MND Association are always looking at ways of getting MND into the media but the more people there are raising the issue of MND the better and nothing is more powerful than the voice of those directly affected. The more people act the better in terms of getting information out there and raising awareness.

Specifically in terms of Wales recently we have been having a number of discussions with BBC Radio Cymru about featuring people with MND to talk about their experiences. If the programme is given a go ahead it will be aired sometime in Spring.

Robyn

Countyboy
4th January 2011, 20:27
Hi Robyn, Unfortunately BBC Radio Cumru is broadcast using the Welsh language and would only reach Welsh speaking people. Though I applaud the efforts of all involved. I will look to see if I still have, or can find contact details for BBC Wales Week In Week Out programme, perhaps they may take on cold weather payments for those with MND and other equally debilitating diseases. Would You Like me to go it alone on this issue? Welsh speaking TV programmes are normally broadcast on S4C Wales.

Best Wishes,
CB.

Robyn Copley-Hirst
5th January 2011, 11:23
Hi CB,

I would hope that none of us go completely alone on the bigger issues. Although we all might 'do our own bit' we are all working towards a common goal. I think anything you can do individually would always help raise awareness for everyone and hopefully people will start to listen. I'm sure I've posted this elsewhere, but I'll mention it here just to keep everyone up to date who is not aware of what's going on with the cold weather payments.

A large number of charities signed an open letter organised by Macmillan calling for terminally ill people to receive a cash rebate from energy companies. Kirstine Knox signed this letter on behalf of the MND Association.

On 2 January The Observer wrote that leading health charities are calling for all terminally ill patients to receive a new cash rebate brought in by energy companies for 'vulnerable' customers because many cannot afford their fuel bills. The paper mentions the MND Association as one of the charities who have signed a joint statement which we hope will persuade Energy Secretary Chris Huhne to ensure that the terminally ill receive the rebate.


Guardian Article: Fuel Payments for Terminally ill (http://www.guardian.co.uk/society/2011/jan/02/fuel-bill-discount-for-terminally-ill?INTCMP=SRCH)

Sorry to those who have read this info more than once! It is being discussed more fully in another thread here on Winter Fuel Payments (http://forum.mndassociation.org/showthread.php?66-Winter-Fuel-Payments&p=491#post491) :)

Just a thought CB, but it might be worth asking your local groups if you attend any, if there are others there who share your view.

Robyn

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