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View Full Version : Best Use of Windfall Bonanza From Ice Buckets?



Graham
25th August 2014, 19:09
Hi All,

I feel it would be remiss on our community if we did not discuss the best use of this generous windfall from the British public.

Terry
25th August 2014, 19:18
I don't know where it's going Graham, probably a lot to America as they come up with the great idea. I think a lot are not raising money just doing it as a challenge to do and for the fun aspect.

One thing it is doing so well is raising awareness of Mnd.

caz
25th August 2014, 21:17
Evening pete hope you are keeping well.everybody I know who has done it donate and nominate and judging by the latest target 763 thousand pounds (phenomenal) and rising hopefully we all are.like others I hope it is not only used on research but a much better and quicker access to equipment needed.as someone posted on the just giving site all cancers have a high percentage of surviving.mnd
does not and there is no cure.rather blunt I thought but very honest.that is the message that should be out there and although we all had terrific fun doing the challenge at the forefront of our minds was the fact that this was also at last giving us hope that the money raised can finally find a cure .there are way too many shattered families left after losing our loved ones and maybe there wont be too many more to come.anyway that's me off my soapbox lol.still waiting for andrew to post his challenge.love as always.carolinexxxxxx

pete
25th August 2014, 22:17
Hi Caz,
Always good to see you posting, yes I wonder who has the final say, I agree research needs to be done ,but I hope someone is keeping an eye on just what we get for this money, I would hate to think that the powers that be don't keep pouring endless funds into maybe and possibly in two years ,that really needs to stop ,unless definite advances have been made that are tangible and are verified by another lab, the thousands of folk who are giving this money deserve to see it do what it's intended for. As for funds raised in the uk , I think that stays in the uk, unless it's put into a joint fund and that will be extremely difficult to manage . Caz , your so right when you say more money should be used for helping with equipment for those who need it ,not in three months now . We all know those who have passed away while waiting for anything positive, let's hope it's now time to reasonably expect results from all this generosity of so many folks who are supporting us , it's amazing how kind people can be once they are made aware that there are many more conditions that really do need funds as well as cancer research who really do know how to make folk aware by excellent publicity .

Pete
XXXX

john
25th August 2014, 23:08
I received this from mnda today which suggests the researchers have plans for some ,if not all the windfall.

http://mndresearch.wordpress.com/2014/08/25/working-towards-a-world-free-of-mnd/

I have posted this on my facebook page which is a result of concern in the USA that money will end up paying salaries and other expenses when the view on alstdi is that the people donating are doing so in the hope that their money will be spent on seeking a cure.

https://m.facebook.com/story.php?story_fbid=10204744372917979&id=1496850491

I have been posted a link to a video of someone doing the ibc in Venezuela. This really is global and if it can raise people's desire for a cure and the funds to bring that about then mnd may , like aids in the 80s become a manageable condition. Let us hope so.

John

ElaineDebra
25th August 2014, 23:29
Hi All,

I feel it would be remiss on our community if we did not discuss the best use of this generous windfall from the British public.

I have seen many younger friends on Facebook posting their Ice Bucket challenges. Few knew what it was raising money for and when I told them it was for ALS in America and that it is the same as MND in the UK most were surprised. Surely the MNDA needs to associate itself much more publicly with this challenge. How much of the money, which is now being raised on a global basis, will end up with the MNDA?
Of course I am happy that so much money is being raised - my mum died from MND - but I don't think a clear awareness is being raised at the same time.

Trevorhb
26th August 2014, 11:43
Agreed, for many people its just another fun thing to do. Also agree that as well as research, money needs to go to help people who are suffering now.

Steve
26th August 2014, 13:31
The MNDA has passed the £1M mark this a.m on their justgiving site.

The criticism on TDI toward the ALSA was because only 29% of their funds were spent on research. They were concerned a large amount of the $31M raised would be spent on admin. It's a fair point but I take anything on there with a pinch of salt. They are a cantankerous bunch.

I can't see there being any divvying up, its every man for itself as the opportunistic people at Macmillan have shown. Their FB wall is full of angry people.

ccinjersey
26th August 2014, 13:47
It really is such a phenomenon ! The fact that it was able to steam roll out of the US and right into other countries makes you realize it really is a ‘small world after all’ thanks to social media. It would be nice to believe that all donations can be pooled together for the long awaited cure and really be a world free of mnd.

Sadly I don’t believe people will demand or expect to see where their donations actually went. Upsetting to think they will continue to waste it on the mice, can only hope that won’t be the case and use the funds to pioneer into new frontiers with a real breakthrough and a real cure justifying what was just accomplished here.

The amount of money raised is astonishing, and so agree surely a large portion should go into the hands of those suffering for whatever they may need. That’s why a foundation like the ALS Guardian Angels are so deserving of some of these funds. Putting the donations to the needs of those suffering.

As silly as a challenge it is, it certainly enlightened people to this illness. I can give you an example; I had a patient yesterday who was in tears, she is a breast cancer survivor and they just discovered a mass in her abdomen. I was trying to console as I scheduled her cat scan. I said to her things could always be worse, at least with cancer there are different options and treatments she can try and have success, I said look at an illness like ALS, there really is nothing out there as far as a treatment, and still no cure. She said, ALS ! her grandson just made her do the ice bucket challenge with him! And they both donated $25 each. I asked her if she knew what the devastating effects the illness brings? She said she does now.

Let’s hope the ice water keeps flowing until the cure is found.

Terry
26th August 2014, 18:07
Welcome to the forum Elaine;

I could not agree more in that we need someone there at the big events like the bucket challenge in the F1 racing.

Bilando
27th August 2014, 08:02
The MND association will receive all donations on its Just Giving site as will local branches that have their own JG pages. The directors and/or Trustees of the association are the ones to decide where the money will be spent. The AGM takes place on the 13th Sept at East Midlands airport where this topic may find an answer. Keep fighting ! Ian

willsandco
27th August 2014, 11:25
Research aside, if it goes to help just one person's life more bearable with equipment, or medication, or agency support, it has achieved its aim. It was a humble start in USA from one man with a dream which has completely exceeded everyone's expectations. Further, it has educated the public into the complexities of MND although, in truth, no one begins to truly understand it, until they are walking in its shoes, or caring for someone with MND. Every single day I am amazed at how this has grown. There is not one member of my scattered family all over the world who had not done it, nominated others and donated. I am so, so proud of everyone involved with this. (My turn Friday - have been touring around Scotland and had nowhere to dry wet clothes!) My family are gathering to witness it which is really something special God bless you all xx

bigredkeith
29th August 2014, 18:51
Well, like everybody else, I am astonished and somewhat humbled by the success of the ice bucket challenge. The money raised by the U.S. Branch, ALS is quite staggering and as of typing this stands around $101 million.

With the mnd association ice bucket challenge funds raised approaching £3.5M, it's a valid question how should the resources be allocated. Well this is just my opinion, for what it's worth, but looking at a lot of the ice bucket challenge videos, the one thing that seems to come through in the vast majority of them is "let's find a cure".

So following on from that theme, and also bearing in mind that this influx of funds is in addition to the mmd associations usual fundraising activities, I believe that this money should essentially be ring fenced. 50% of it going to research, and 50% going to patient care. The real benefits there are the 50% that goes to patient care can in a lot of cases be used as an additional fundraising tool. Just as with things like red nose, showing people who donated funds are short video of how their funds have been spent and how they are directly benefitted and mnd sufferer could itself prove to be an additional fundraising tool.

I know this may sound a little mercenary but at the end of the day the more money we raise the better chance we have a finding a cure and the better quality of life we can give to those suffering from mnd.

Although there is always an argument for using some of these funds to contribute towards running costs, administration, and indeed to contribute towards additional fundraising activities, wouldn't allocating 50% of the new fund raised to patient care, and then making a few short videos demonstrating how that money is being used, do far more to raise the profile of the disease, the association's work, and the benefit afforded by these donations.

It's very rare that a small charity like ours get some major spotlight, therefore the association has a duty not just to use the fund wisely, but to keep the ball rolling so that people can actually see where their money went and therefore be encouraged to become repeat donors.

That's my opinion for what it's worth, I hope it generates a little bit of discussion that hopefully will get picked up and taken forward at the agm.

Keith

willsandco
29th August 2014, 19:13
That is good common sense. Chiildren in Need do that every year - they show you where the money has gone. I'm not at AGM but, as you say, this needs picking up by someone who will be there. There are so many people in real need of resources, therapies and general support. A huge thank you for this post, Keith.

john
29th August 2014, 20:15
There are real fears in the US that the funds will not be viewed as for research when as you say a lot of those doing the challenge are seeking a cure which can only come from research. The researchers at mnda are certainly hoping to put the funds to good use and test every medicine known to man to see if anything exists which can make an impact on the disease.

The ALS association who hijacked the IBC are struggling to know what to do with the funds . They have copywrited the ALS ice bucket challenge although it was not the idea of the originators who hoped it would go into finding a cure and did not nominate any beneficiary. The ALS association jumped in and provided a link and now have all this money which is greater than all the money they have put into research since they came into existence 30 years ago. A petition has been started asking that they use at least 75% of their receipts for research but of course they can please themselves once the funds are in the bank. The later links ask donors how they wish their donation be used but that came quite late in the day. To date they have over 3 million donors so they aren't going to go back and ask all of them to choose.

It will be tragic if resources of this scale are not applied in bringing an end to this disease. If this is done then help for patients becomes irrelevant.

John

bigredkeith
29th August 2014, 22:10
Hi John,

I can appreciate your feelings of frustration at how the ALS foundation does its business, but they have confirmed that the trademark request that was submitted some weeks ago has since been withdrawn after consultation with the families of those who initiated the challenge. It's also worth pointing out that the structure of the U.S. organisation is significantly different to the structure of the mnd association so it's really like comparing apples and oranges.

It is however important to point out that even if they still apply their standard 28% of funds raised go into research, as things stand that would be almost $30,000,000 going directly into research on a worldwide basis that was not available prior to this challenge. Whatever misgivings anyone has about how they distribute the money, a significant amount will end up going into research that was not available from the budget this time last year.

The area I do have to disagree with you John is the need for patient care and you're feeling that if there is enough research then patient care is irrelevant. As you're likely know, any research model that is not yet in patient trials, even if it's fast tracked through the FDA'S approval system, is unlikely to produce the usable patient therapy for at least five years. Even if we get extremely optimistic and say that we might get a patient therapy within the next three years, that's years during which patient care needs to be increased dramatically to ensure that more patients are alive through better care to receive any therapy.

Better care not only equates to a better quality of life but has a real tangible effect on the length of life, especially those at an early stage of diagnosis.

As for the ALS foundation hijacking the ice bucket challenge, Corey Griffin did intend for money raised by his "invention" to go to an ALS sufferer, I'm sure even he could not have conceived that $100,000,000 would have been raised. If he had, I am sure he would not have wanted the whole amount to go to his friend Pete Frates.

http://www.independent.co.uk/news/people/als-ice-bucket-challenge-cofounder-corey-griffin-drowns-aged-27-9681129.html

All that having been said, of course I agree that we need to keep an eye on how all this money is spent. But if we start from a position of mistrusting those who are in charge of the funds, that will inevitably build a sense of antipathy and that road always leads to a bad place.

Well that's my two peneth.

Keith

john
30th August 2014, 01:25
Hi Keith,
I think it is tragic that our welfare state does not provide adequately for the needs of the mnd sufferer. It is disgraceful the way people with what can be a fast progressing disease are treated. That goes for all government agencies from the people administering pips to those responsible for issuing blue badges, the wheelchair service who leave people with no choice but to go and spend scarce resources. Likewise the lack of speaking aids, home adaptations continuing health card administrators . The list goes on and on and I suspect regrettably the more the mnda and other agencies do them the less the government will do for the forgotten group of mnd patients.
I am not sure what the answer is for this windfall and would rather see these kinds of activities supported and money arriving in the coffers of organisations who can make a difference but I suspect there will be a lot of talk before the big decisions are taking. I just hope the right choices are made. What about bank rolling one or other of the promising stem cell treatments? As things are it would appear the FDA approval, when it comes will not lead to an open door in the UK for their use further hurdles will need to be jumped. I am sure with the right amount of resources the path for these treatments could be speeded up.

John

Bilando
30th August 2014, 08:45
Gd morning Keith, John and all forumites. Yours is an excellent idea Keith re short video's as a follow up to the IBC keeping the public's attention on MND and to keep the donations coming. I agree that the MND ass needs to get far more involved with the IBC in the public domain and the Mnd fund raisers surely could develop Keith s idea . How the money is a difficult one. On Monday I will email Sally Light ( chief exec) and ask her that question then I will ask her for contact details for the decision makers to be put on the website or on this forum. The AGM on the 13th should then have something to get its teeth into. Like John I favour research but I also recognize the need for more financial support for plw Mnd. Keep fighting it ! Ian

Lycanthrope
30th August 2014, 14:02
I agree with John re how disgraceful it is the way people with MND are treated and left without much needed equipment and help. It's hard enough trying to deal with this awful disease without having to fight for everything else needed to to cope with it. There really should be money directed towards funding much needed equipment and support as well as treatments for the illness itself. What a great position to be in though deciding what to do with all this money? I can't help but smile. Hopefully there's going to be some light at the end of the tunnel before too long. Becky x

Trevorhb
30th August 2014, 14:16
4.5 million and still counting. it has really taken off and must be good for us and future sufferers. I worked as a professional photographer, colleagues who only know me through a online forum have been doing the challenge to support me. They have been so supportive and my wife and I are so grateful.

Jo82
30th August 2014, 15:22
Afternoon all, relative newbie to the forum though have been a volunteer with Windsor branch for a little while. I was one of those who took part in the craze, but have to say, whilst it raised a lot of money, I don't think it did so much for awareness - particularly with the ALS/MND different names. That said, our biggest challenge now is to convince donors that money will go to fighting the disease - and this is my biggest worry. Every charity has costs - nothing can be done for free. However, the % earmarked for research was far smaller (was it something like 29 % I read somewhere?!) than anyone would have anticipated. I really believe though, given this is a windfall, that falls outside of annual income, why can't it ALL go to finding a cure?

Volunteer, Windsor branch. Dad diagnosed MND Nov 2013, 68 years of age

Night walker
30th August 2014, 16:56
Hi

I have donated to many ice bucket attempts for many of my family and friends. I do not have oodles of cash spare, so every donation was precious but I can't help feel that a lot of it will be gobbled up by nonsense. I hope the association does publish their plans of what they are going to use it for so that in future I can make better decisions on if I donate at all. There has been so much research already I cannot think what next they could find to research so it will make a very interesting read.
Every second of everyday I hope and pray for a miracle to detect, stop and cure this wicked disease that just seems to only affect ordinary lovely people. Some of the ice bucket challenge videos on Facebook involving current MND sufferers have torn me to pieces and I share all of them in the hope it will strengthen awareness of exactly what this disease does and the help that is needed for people who are living with MND today.
That's that off my chest then.

Sylv

bigredkeith
30th August 2014, 18:05
Hi Jo & Sylv

Thanks for doing the challenge, and making a donation, doing my one on Wednesday, I hope the weather is a bit warmer. :cool: I think it's all too easy to get confused about the amount of money that may or may not get spent on research. Because of the structure and charter layout of the U.S. based ALS organisations, they have a set percentage allocation method it's the only real way they can work it.

From reading our prospectus, 2013 MND association consolidated statement, we do have a great deal more freedom on how we allocate funds and although it seems that we have in the past varied our research funding between 12% and 30%, from what I understand unlike with the ALS foundation this is not set in stone.

The first thing I would say about 29% allocation to research is that as things stand at 4.00 PM on Saturday August 30 the ice bucket challenge windfall is around £3.5 million, that would be just over £1,010,000 going directly to research. I do think anybody trying to put a negative spin on that is on a hiding to nothing.

Unfortunately, it's common for our American brethren to look for the simplest option. http://www.medscape.com/viewarticle/804221_5
The link above gives you an indication of some of the variance of motor neurone disease of which ALS is just one. Granted is the most common, but still, it is just one. That having been said, again, with now well over $100,000,000 raised by the ice bucket challenge 29% of which will go to international research, again, I challenge anybody to turn her into a negative.

I know I am new to the forum and I'm newly diagnosed, and I haven't yet had to deal with many of the frustrations and unfairness our systems have to offer, especially when it comes to equipment access, but I do think that approaching this windfall from the negative side is likely to produce less positive results than if we approach it from the positive side.

On the subject of why the entire windfall should not go to finding a cure, I hate to be the bearer of bad news but £3.5 million is not gonna find a cure. £1,000,000 will fund some groundbreaking research, which may well attract additional funding to take it further down the line, but allocating the full £3.5 million is more likely to frustrate the UK donors than actually do any serious long-term good.

Just to put things into perspective from a big Pharma Point of view, there needs to be in general well over a million people with a diagnosis with a life expectancy of 10 years to justify the two plus billion dollars it would cost them to research and bring to market the treatment. Less than a million people and the figures just don't add up, which is why spending the full £3.5 million on research is something of a waste.

If you look at the bulk of the posts on this forum that relate to accessibility it's all about lack of funding, lack of resource, lack of access, and lack of understanding from the people in charge of the purse strings of the dire need we have. It's worth remembering also that to somebody sitting behind a desk at the department for work and pensions pip line, there is absolutely no difference between somebody who is disabled throughout obesity and somebody who is disabled through MND. There is no big red flashing light that comes on whenever MND appears as a diagnosis, even though there should be, there isn't. So actually having a separate fund administered from within the division of the MND Association to help people have better access to vital aids and adaptations should in my opinion taken equal president's as allocating money to research.

I'm not saying the research isn't important, far from it. Remember it was an MND Association funded project that initiated the DNA bank. It was also funding by the MND Association into Sheffield and Barnsley neurology departments that saw the development of the iPS strain that is now being used by Oxford. I personally would like to see a ban on the moratorium on full ESC testing but that's not gonna happen it's a whole different story.

Suffice to say, I think if we can all stop looking at this and waiting for the negative to happen and get involved in making something positive happen I think a great deal more could be achieved. This is a fantastic amount of money for such a small organisation as ours and if we use it right it can make a tremendous difference in the short term and in the long term. I do agree that we have to get the MND Association to get more on board with keeping this ball rolling in keeping MND on the tongs and in the minds of public and I think the best way of doing that is to engage positively with the MND association with an expectation that they do genuinely have our best interests at heart.

That's my opinion, for what it's worth.
Keith

john
30th August 2014, 18:15
From the mnda website just now


So in total the MND Association has received over £4.5m so far....and we are still counting your generous donations

John

bigredkeith
30th August 2014, 19:00
I think that includes direct donations through the MND site as well as the extra funds donated through the just giving site.

Isn't it great!

Keith

ccinjersey
30th August 2014, 19:22
It certainly is great!! but the ice water bucket can't stop here...

I think this challenge has definitely brought this illness out of the closet, but we are still left in the dark ages for the treatment/cure, and enlightening people as a whole to the devastating effects on those suffering and their loved ones.

In my opinion it’s ’Strike while the iron is hot’ should be first and foremost in bringing awareness. Besides seeing people pouring ice water over themselves it would be great to see these videos followed up with those living everyday with this illness, as well as family members providing the care needed. I think it’s the duty and obligation of the ALS & MND Associations to make it their campaign now in demanding a cure while they have the spotlight. One way to do so is to showcase the illness itself. The AIDS victims did it, so why not the same for mnd?

Once the momentum is gone who will be asking the questions as to the how and where the money is being spent ? The organizations responsible for the distributing the funds for research must be just as relentless as the illness itself in demanding a cure, especially now with this powerhouse of money behind them. No excuses for them to be allowed to continue to drag their feet, and waste time as they have done for the past hundred years as the illness continues to claim victims.

People donated their money because their hearts are in the right place, but once the craze fades it will be like everything else, ‘out of sight out of mind’. That really should not be acceptable or tolerated with an illness of this magnitude.

Those parties responsible for ensuring the money donated is balanced between research, and meeting the needs of those suffering are the same parties responsible for ensuring that the awareness and spotlight remains until the cure is found.

Just my 2 cents as well for what it’s worth :)
CCxxoo

john
30th August 2014, 19:29
The website says the following:-

"Since last Friday we have received over £3m in text donations. But all you lovely people have also been giving in other ways too – through Just Giving, on our website, and over the phone.

So in total the MND Association has received over £4.5m so far....and we are still counting your generous donations."

You are obviously better informed thanI.

John

bigredkeith
30th August 2014, 19:52
I just keep an eye on us over the course of the day.

https://www.justgiving.com/IceBucket4MND

Keith

john
30th August 2014, 20:19
I see just giving charge 5% for their service , that's £175,000 windfall on £3.5 million, possibly more because they make the same 5% on the tax they reclaim on gift aided donations( 80% elsewhere on the site). Not sure if the £3.5 million includes gift aid tax recovery or not. If it doesn't there is an additional £700,000 Mr Osborne will be adding!

Let us hope it will run a while longer, if the USA can raise $100 million we should manage a fifth of that, $20million!

John

bigredkeith
30th August 2014, 20:36
Hi CC,

I don't want to sound like I am shooting everybody down in flames that's not the case. But I do think sometimes the scale of the problem we face in finding a cure is just not being understood. Back in the mid forties in the UK as a cancer hospital called Christie's. It was the centre for cancer excellence in Europe and every year he received donations and funding in excess of £100,000,000. We knew vastly more about cancer, how to identify it, how to mark it, and in many cases how to treat it, and in some cases have to cure it.

In 2011 the top eight cancer research and cancer care charity is in the UK received almost £2,bn in funding and direct donations. They can now identify hundreds of different types of cancer treat virtually all of them and have a cure rate of over 50% for all cancer types.

I honestly don't think that we can accuse the MND Association or the ALS associations of dragging their feet. Remember this the average man could look under a microscope and see an abnormally forming bunch of cells and identify that has cancer, it just looks odd. It's not because of lack of investment or intent that we don't yet know what causes MND, it's because in the vast majority of cases at the moment, the only way of looking at the death of the neuron is by looking at tissue under a microscope following a post mortem.

Remember we could identified cancer back in the 1920s because we could see it we still cannot see motor neurons alive or dead in human tissue until after the person's dead. I'm sorry if this sounds a bit graphic but I think we all need something of a reality check here, at this point in time we still don't even understand how and why Rilutek works, again I have to say not because people have been dragging their feet or have no interest it simply because there hasn't been enough funds available to do all the things that need doing.

I for one want to engage fully with the MND Association and try to put this comparatively massive windfall to good use. I'm not naive enough to think the cure is coming along in my lifetime and my actions are simply not guided by a kind of thinking. It's just that however bad this is, I have to continue to think that I can get some good to come from it.

It would be ever so easy for me to sit back and let this happen to me, I choose not to, I choose every day to bring something positive to the table, some fresh thinking, and to help others who may be struggling a bit more than I am.

So come on folks let's think about what we can do with this and not what hasn't been done in the past or how flawed the system is.
Keith

Graham
30th August 2014, 21:51
Hi All,

I raise three points:

1. Is our Government still under obligation to match £ for £ donations made?

2. What about claiming tax back on donations?

3. If the BrainStorm stem cell treatment is the best shot at a cure, the donations would be enough to establish a treatment centre here in the UK. Minimum requirement for me is that MNDA investigate thoroughly the BrainStorm treatment.

ccinjersey
31st August 2014, 04:51
Hi Big Red

You made some very valid points. You have positive energy Keith and are forward thinking, but I must say I disagree about ‘dragging their feet’. No treatment, no cure for the illness labeled ‘the cruelest disease’. Very true there is lack of funding, but how and why is that accepted ? Because it is considered an ’orphan illness’? but it no longer becomes an orphan illness when it effects you or someone you love. The statistics are 1 in 100,000 of getting it, to me calculate that by world population that’s an awful lot of people, and this illness does not discriminate.

The medical profession, scientist, researchers are all well aware of the devastating effects, the viciousness, and relentlessness of this disease, so why not the race for the cure?? Why have they not attacked this illness just as aggressively as it t attacks its victims? A treatment, something, anything to stop progression in all these years? Why has there not been an outcry from organizations like ALS and MND demanding funding, research. and awareness? Maybe they did…but if so they were awfully quiet about it. The AIDS victims made an awful lot of noise. It goes back to the ‘Squeaky wheel gets the oil’, and they did indeed get the oil, and look at the lightening speed in which they got it compared to other illnesses.

The words ’Lou Gehrig disease, ALS, MND’ are known yet vague to the average person of just what this illness is really all about. If these organization had been out there out there fighting, demanding and bring the public awareness needed to those they represent we just might be a lot further along then testing mice and lack of funding. It took a young man suffering with this illness, and his friends to do what could not be done by those responsible.

Your right Keith no sense in looking back, onward and upward. Nothing short of a little miracle has happened in opening hearts, minds, and wallets to this illness. Therefore in my opinion now is the time for those responsible to grab the spotlight, and keep it shining, turn up the heat, apply pressure where needed, and bring forth a cure, a treatment, a cocktail, something, anything that’s tangible and real, and certainly not in another 100 years from now.

CCxxoo

john
31st August 2014, 08:13
Well said CC. The indifference of those who could bring about a change should now come to an end. There must be a lot more awareness in the UK and USA. It is time to keep the spotlight shining and use this money to make a real change. By all means use resources to improve the comfort of those living with this disease but also to invest in a determined effort for a cure.
The big Pharma industry is not interested because the numbers don't work for them. 6,000 here in th UK and 30,000 in the USA , 500 new cases here each year. A recent attempt by the alas association to create a register in the USA came up with a list of 12,000 people, way short of the 30,000 that has been talked about for years, and a number not even they believe. If they can't even count properly can they responsibly invest $100,000,000? Not enough to make the billions the industry like to see. Aids was different in that it initially only affected a few but had the potential to kill everyone having sex. You can't say that of mnd.
Research will have to be funded by the charities committed to eradicating this disease and whatever you can lobby the government to give. Science has moved on and it is possible to carry out initial trials on cultured diseased cells in Petra dishes a lot more rapidly than the mice experiments and I struggle to understand why a trial costs millions. Here in the UK hospitals have teams and regular visits from mnd patients to those teams. Why can't they be harnessed and used productively to monitor trials? Shouldn't governmental controls be re examined to see how the whole process can be speeded up rather than left as a major financial hurdle for drugs to jump. I do not want the process compromised so that drugs are created which are neither efficacious or safe, quite the reverse but there must be a way through this barrier which in 140 years has produced nothing but Riluzole.
The disease needs a champion who can keep the media interested and keep the drive for a cure going forward. If we can find the funds to finance warmongering around the world surely we can invest in release from this disease.

John

Big Steve
31st August 2014, 08:42
If every MND patient had to be treated in an NHS facility for any length of time, the emphasis would be more on a cure rather than the apathy that we are currently shown.

Aargh!!!

Trevorhb
31st August 2014, 12:03
I have seen videos about the challenge where people have said they are donating to their favorite charity, not necessarily MNDA. I suppose this challenge has caught on so much the original meaning has been forgotten. Still think it is great.

bigredkeith
31st August 2014, 16:07
Hi All,

I'd do truly understand everybody's frustration, but I do think there is a bit too much naivety about the magnitude of the task in hand. I just ask a couple of simple questions,

How much of last year's research budget should have been diverted away from research and into disease awareness?

How much of last year's patient care budgets should have been diverted away from patient care and into lobbying government officials for extra funding?

When you're dealing with a cake as small as ours has been in the past year you have to be very judicious about what you can do with that cake. Please please please take a look at the formula on the MNDA site as it relates to research funding, how much each individual research project gets, and what that money actually pays for. The research that is now possible on Petri dish motor neurons is only possible because of a research grant awarded by the MNDA in I believe 2006 that actually finally produced results that had been verified, peer reviewed and replicated by at least two other similar groups before it could be called the working protocol.

I know everybody wants to see instant results, I also know that there is a great deal of frustration about a perceived lack of progress. I just want to refer everybody back to the cancer situation, even with the billions spent on cancer research we still haven't cured cancer. People still get cancer all kinds of cancer and only when they've got it is it treated, quite successfully these days granted, but still people have to get it before its treated. Cancer hasn't been cured they have simply found several methods of treating the disease once its present.

Yes they can now detect it, far better than they ever could, and yes they can treat it, far more successfully than they ever could, but even with the billions and billions that have been spent on cancer research they still cannot cure it.

What on earth makes you think that our disease is easier to diagnose, easier to treat, and easier to cure than cancer? We have made some absolutely astonishing strides forward with some of the trials that are currently underway, not just here in the UK but in the U.S., Israel, South Africa and Australia.

As I said earlier, please think about the dilemma that the MNDA find themselves in, there is enough money to make a difference to patient care, and there is enough money to make a difference to some cutting edge research projects but if you actually want to find a cure within the next 10 years that isn't currently in patient trials you need to find a windfall in the billions not in the millions.

Just a footnote on HIV and aids, the clue there is in the V, it's a virus and as such bound on some level to be susceptible to one of the 300 plus existing antivirals that were around in the eighties. AIDS has not been cured, we have simply found a way for using a cocktail of antivirals of slowing and sometimes stopping the HIV virus from progressing into full blown aids. People still get HIV, you still can't take a pill or a vaccination to avoid getting it it's still in the vast majority of cases it a life shortening illness and again it has had billions and billions of dollars spent on it and still no cure. Yes it can be treated and yet it no longer an absolute death sentence, and one day if we can get billions into the research side of things maybe we can get to that same place.

John, it's a valid point you make about how often we all visits, MND specialists at hospital. The problem is, there are MND specialist nurseries, the neurologists, neuro physiologists, a neuro pathologist who make up the bulk of our MDT are not research scientists. If they undertook any part of the testing, evaluating and restructuring on any one of these trials it would likely invalidate the results because, I say it again, they are not research specialists they are patient specialists with a completely different focus on the disease. You may not agree with it, and you may think that research takes a long time already, but if you start skewing the results by not following correct protocol then the next team to come along and try replicate results will always get a different set of figures and therefore invalidate the entire process.

I just have to comment on something I saw as a comment under online article about the ice bucket challenge, somebody actually said that researchers who specialise in this kind of research should do it for free because they have an obligation to the people who raised the funds. Now you'd think that this was an isolated and somewhat idiotic opinion, and yet there were over 50 additional comments underneath expressing support for this concept. It's not just on here that there is a complete lack of understanding about the costs involved in research, the general public also have no concept of how much it costs to do a three year study to find test markers in faulty RNA that would identify the regression of the resultant folded Alpha protein.

The research needs paying, they can't live on fresh air, the lab equipment needs paying for, have you any idea how much it costs to lease a mass spec for three years, consumables, lab assistants and don't get me started on how much it costs to lease a lab to do all the work in.

And I'm sorry to say I'd do disagree when you imply that the MNDA have in any way procrastinated or have dragged their feet, again I challenge any of you to come up with better use of the meager resources that they have had at their disposal over the last decade. Yes you can accuse them of not making motor neurone disease as high profile of some of the other diseases and some of the other charities, but that kind of expertise doesn't come free of charge, you have to pay for it, you don't just say to a TV station make me an advert and because you're a charity for a horrible disease they do it for free, you have to pay to get the advert made, you have to pay to get the advert published, and you have to pay to get further research to make sure that your target audience are actually seeing the advert. Tell me again which part of the research or care budget would you take those funds from?

Just my thoughts.
Keith

bigredkeith
31st August 2014, 16:51
But here's something for you to all consider,

Have you any idea how much the NHS spent last year alone on conducting research and carrying out procedures related to infertility in women?

Equally, have you ever considered how much the NHS spent last year on counseling and carrying out procedures relating to gender reassignment?

And have you ever considered how much annually the NHS spends of our money on purely cosmetic surgery? I'm not talking about plastic surgery following injury or disfigurement, I am talking purely from a cosmetic standpoint.

I stand to be shot down the flames completely here, and this has been my view for decades not just since I was diagnosed with MND? Being infertile is not a life threatening illness. If you can afford to bring up children in today's society, then you should have the resources to go to a private clinic and pay for infertility treatment. I know a lot of people do, but last year alone the NHS spent close to £85 million on researching and carrying out fertility treatments with taxpayers' money.

The NHS bill for gender reassignment and plastic surgery last year was close to £50 million. Not only are neither of these conditions life threatening, but if we're brutally honest, non of the above things is actually an illness.

So if you really want to get cheesed off, up in arms, and start a riot, ask why that £100 million isn't being spent on curing illnesses or saving lives, but is instead being spent on satisfying people's vanity, sexual preferences and genealogical imperatives.

Again, as always, just my outspoken opinion.
Keith

john
31st August 2014, 17:21
Hi Keith,
I agree on several points but I am not sure why you feel others are not worthwhile. Gender realignment is major issue for the person with a perceived need. Would you advocate psychiatry or electric shock aversion therapy? You forgot to mention those who spend NHS resources removing tattoos.
Regarding cancer I think the major difference is that there are diagnostic bio markers which enable therapy to be started sooner. If someone could identify the illness early enough it may make intervention possible. Also there are identified factors which are causes of cancers where education is going on to inform us of lifestyle choices which should help to prevent some cancers.
I wasn't suggesting that the mnd centres carry out trials just monitor them. Carry out things like blood tests,emg testing etc. all the things they do anyway. That isn't going to compromise anything.
Nor was I suggesting diverting NHS resources but stop the spending on overseas aid to places like India which can afford nuclear development and space research and Russia which can afford to take on the world militarily. Similarly we seem able to launch "peacekeeping" duties at the drop of a presidential hat.
John

ccinjersey
31st August 2014, 18:10
Hi Big Red

No negativity here, and we won’t allow you to go down in flames for expressing your outspoken opinion. This is a forum with different point of views that are heard, and although all may not always be in agreement certainly no head bashing involved ! Lol Unless of course you PM me those little red angry devil faces, then I might just have to send Uncle Vinny and Frankie your way :) lol

I don’t believe people are expecting to see ‘instant results’ and I don’t believe the lack of progress is ‘perceived’ as you say. The lack of progress in 140 years in quite ‘real’, and instant results are unrealistic, but real results are not.

Yes it all about funding, but if the cake is small then why not demand a larger cake? Other illnesses, and organizations have done just that. They may not be a cure for AIDS but there is a treatment, and in the big scale of diseases it came fairly quick, As John stated it was because it had the potential to wipe out mass amounts of people. MND produces inhuman suffering and death, is that not equally balanced to produce some form of a treatment? And to demand it sooner then later?

How much money has the US and the UK spent on wars in the past 100 years? How much of those funds could have and should have been diverted to conquer the ‘cruelest disease’ known to man??

The ‘meager resources’ as you said is exactly the problem. Which goes back to my original question how and why is that accepted?

Your healthcare system as opposed to the US is quite different and more like comparing apples to oranges. In our case we pay, pay and pay out of our paychecks, out of our pockets as well as our employers contributions. If you have the misfortune of having no insurance in the US and have the misfortune of a life threatening illness, you might as well meet with the funeral director and start making arrangements (but that’s another topic for another day lol) my point is, we are a Nation of great resources and wealth when it comes to treating illness so where has the treatment been in the last 100 years??? If this illness showed greater numbers of those suffering I have no doubt treatment options would be available, and the pharmaceutical companies would be reaping the rewards.

Infertility, a sensitive subject, but since you brought it up lets debate. Again though we are comparing apples to oranges in our healthcare system. You state if a couple can financial afford a child, then they can financially afford to pay for the infertility treatments.

I lived on the infertility rollercoaster for two years, and yes were able to financial support a child, but the cost of infertility treatments was and is astronomical. One box of the medication needed weekly (speaking for myself) cost $2000 a week I needed two boxes weekly. Not to mention daily blood work, three doctor visits per week, ultrasounds, and surgery all over a two year time period. The cost was financially impossible, unless we were the king and queen of England :)

Just my outspoken opinion as well :)
CC xxoo

bigredkeith
31st August 2014, 18:50
Hi John,

Don't get me started on our overseas aid budget, that's a discussion for a whole different forum. As for whether people are worthwhile, that's not really the idea in question, it whether or not we should be spending a dwindling amount of available resources on non life threatening conditions before we treat terminal conditions like MND.

If you had £1.00 to spend and that £1.00 could give one person gender reassignment or one person a cure for MND, where should it be spent? Spending it on gender reassignment would mean that the MND patient dies by definition states that the feelings and emotions of the person needing gender reassignment far outweigh the life of an MND suffer.

I know that makes it sound very simplistic, and it's not meant to cast aspersions on the characters of people needing gender reassignment, but one gender reassignment surgery costs the NHS in counseling and theatre time and resources twice the budget it took to produce a working protocol to retrograde bone marrow stem cells.

In this particular subject, for the first time we can actually say more people can be helped with that £85,000 it took to carry out a single surgery on the NHS, if that money had been put towards cutting edge research instead.

With the budget in the NHS shrinking in real terms and the most expensive forms of treatment often fall into the category of elective, difficult decisions have to be made every single day. Remember, even if something like brainstorm actually came onto the market, there is every probability that NICE would make the same decision they made regarding the most recent cancer therapies, they're too expensive and wouldn't help enough people to justify them. I say this because the latest cancer drug to be embargoed by NICE would have helped around 6000 people live between six and 12 months longer.

So as you can see, finally finding a cure may not be the hurdle we think it is, the biggest hurdle may well be getting the NICE to approve its use on the NHS. Because let's face it giving a woman in her fifties the opportunity to have children is far more important than saving 6000 lives of MND sufferers. That's the decision NICE may well choose to make.

CC, you get my point about the fertility costs very well, without actually getting my point. My point is not being able to get pregnant it's not a life threatening illness, but here in the UK, on the NHS, those costs that you incurred a paid for completely under the NHS. They're no cheaper, in fact in many instances that far more expensive, but still get paid for completely. It's not about whether treating infertility is laudable, of course it is, but again which is the greater import, giving people babies where the body says no while keeping people alive when the body says no. I have and always will come down on the side of keeping people alive.

I did mention it last post but nobody seems to have picked up on it, who do you think pays for the lobbyists to lobby your Congress and the house of representatives and local politicians and our MP's to divert more funds into MND research? Those very lobbyists get paid the same whether they are lobbying for big Pharma, big energy, or the NRA. It costs money to get a lobbyist to lobby on your behalf to get increased funds from the political class. Yes we now have more funds, but how much of those funds would you be happy to see pay for the lobbyist? No lobbyist equals no additional government grants, but a poor quality lobbyist still cost tens of thousands, but may get next to no results, that there is the dilemma, what's the solution?

Keith

miranda
31st August 2014, 20:13
Oh dear. Perhaps the name BIG RED KEITH tells us something? Unfortunately my MND fingers mean typing is hard work and a slow process which is why I don't contribute to the forum so often nowadays. But, Keith, I am seeing RED and I am feeling patronised by your spiel. I can feel you jabbing an accusatory finger at me when you say "have you any idea ..." Or "have you ever considered..." etc. Yes, yes , yes, yes actually I have already thought through most of the points you raise. I am not complacent and do my bit for other people with MND. But I don't envy the decision makers when allocating the windfall bonanza - no doubt the are unlikely to please everyone!! By the way thank to you my family and friends who have done the IBC. I'm plucking up courage to get my carers to drown me in the shower with a commode bucket of ice cold water - wearing my MND t-shirt of course.

bigredkeith
31st August 2014, 20:48
Hi Miranda,

Well, what it should tell you, my name is Keith, I've always been big, and my favourite football team play in red.

A not entirely certain why you would think that I would be jabbing my finger at you, looking back through the conversation haven't seen you contribute previously. Is not a criticism, merely an observation. I used to be an application developer until I lost the use of my hands. I now use speech recognition, although at the rate things are progressing, I may not have that by the end of the year. But still like to consider myself to be one of the lucky ones on here.

I'm not entirely certain either why you would consider I was patronising you by asking a simple question of others who have made statements in this conversation. Others were making statements indicating that we should spend more money on lobbying and £4.5 million is enough to find a cure. I just wanted others who had made those statements to consider some of the ramifications and some of the costs involved. If you have considered those them how could this be directly at you?

And I will say, nobody else on here seem to feel it was necessary to cast around aspersions, not sure why you did?

As ever, just my opinion.
Keith

bigredkeith
31st August 2014, 20:56
By the way Graham,

Don't know the answer to first two questions as for Brainstorm, I completely agree spot on.

Keith

Graham
31st August 2014, 21:30
Hi Keith,

Yes, the elephant in the room is that people with MND are receiving treatment, that in some cases is reversing the disease.

We now have enough funds to attract BrainStorm to the UK.

bigredkeith
31st August 2014, 21:40
I think it's still in phase II trials at the moment I know one of the facilities is Mount Sinai hospital where the A phase may have already begun. But I agree, absolutely no reason we couldn't run the mirror trial over here, as long as we can get NICE to agree to fast track in the interests of terminal illness.

At least we can start pushing for it.
Keith

Graham
31st August 2014, 22:09
Hi Keith,

Zmap that is now treating Ebola was not even at phase 1 stage!

It is for us to push for our treatment as if our life depended on it.

ccinjersey
31st August 2014, 22:47
The point that I believe I see clearly Keith is you seem to believe only life threatening illness are relevant and worthy of your NHS funding. It seems in my opinion that you seem personally disgruntled with your NHS and how it disburses it funds.

You stated if the body says ‘no’ then so be it . Therefore, what I hear you saying is the medical profession, along with your NHS who pay the these medical costs should move on the next patient’s illness where the funding would be better spent. So then that would mean the diabetic who’s body says ‘no’ to processing sugar should not be allowed to receive insulin? Or is that life threatening enough on your agenda?

We are not talking about the 50 year old woman who wants to start a family when the body says ’no’ I’m talking about the 25 year old who is just as entitled to have a family of her own as anyone else. If science and technology have brought forth medications and procedures to assist and enable this then explain to me who in my healthcare system, and in your healthcare system has the right to deny that?

I am not familiar with your healthcare system, but it does seem to me that you are picking and choosing illness worthy of your NHS and those that are not. Aren’t’ all tax paying citizens entitled to quality and free healthcare in the UK?

You made a good point about lobbyist, but I was not talking about them. I was speaking about the ALS and MND organizations who represent those suffering with this illness.

These are the organizations on the receiving end of this bountiful windfall, and now that this incredible gift has been bestowed upon them it is their duty and obligation to those suffering with this dreadful illness that these donations bring forth the long awaited cure, or at the very least some form of treatment.
.
The entire purpose of what Peter Frates and his friends had intended to do was raise awareness, and funds for these organizations, and clearly they exceeded their wildest dreams. So a huge Cheers to them!

It really is just that simple Big Red. Not sure why you have the need to make it more complicated then what it is.

Hmmm…maybe I will send Uncle Vinny and Frankie over, but just for a little chat LOL :)

CCxxx

john
1st September 2014, 01:17
This is what it is about. I still feel the desire of these people is to fund research and find a cure.

https://m.facebook.com/story.php?story_fbid=516099165190746&id=100003720020622

John

bigredkeith
1st September 2014, 11:12
Graham, yet again mate, absolutely bang on. As soon as the powers that be sense that it something they could catch than all the procedures go to hell in a handbasket. I have to admit it's not a story I've been following but did I hear that they were only providing it to the western victims in the states, Spain and the UK?

John not sure where the link went, may have been removed by facebook not sure but it is showing as broken at the moment.



Keith

john
1st September 2014, 13:03
Try again. Ibc by a son who's dad died in August.

https://m.facebook.com/story.php?story_fbid=516099165190746&id=100003720020622

Lot bigger this time.

John

bigredkeith
1st September 2014, 16:40
CC

I don't know if you're being deliberately obtuse but you seem to not be able to recognise the difference between your desire to have children and then having an expectation that the state and not YOU should bare full financial responsibility for making that happen. Its interesting you pick diabetes as a comparison, I was diagnosed with diabetes at a very early age, again a disease that kills. When was the last time someone died from infertility? But diabetes kills every day.

Having children is a privilege not an entitlement, nowhere does it say in your bill of rights you have a right to have children.

Scientists being able to give infertile people the chance to get pregnant is NOT at issue, your expectation that this service should be paid for in full by the NHS is. If you want this treatment you or your insurance should pay for it. This would free up vast sums of money in the NHS that could be used to develop life saving treatments. This does not in any way impact on your choice to take infertility trearment, but it does put the financial burden for that choice your sholders, where it should be.

Keith

Ellie
1st September 2014, 17:54
How to lose friends and alienate people, Keith.
Infertility can and does kill, just not in the conventional way.

bigredkeith
1st September 2014, 18:22
Hi Ellie,

You're right, couples who are infertile do indeed die. There is a high degree of suicide amongst couples who are undertaking fertility treatment as well as amongst those for whom fertility treatment has been unsuccessful. That doesn't make infertility the terminal illness.

I think the very fact that this subject is considered such a taboo subject is the very reason that people in a position to make sensible decisions about this kind of project are far too scared to even brooch it.

As for losing friends and alienating people, if alienating everyone on here would get us an extra £50,000,000 per year dedicated to finding a cure for mmd, put me at the front for the queue to be Billy no mates.

All I want is for somebody to explain to me why giving infertile couples free IVF treatments on the NHS is a better use of £50,000,000 per year when that same £50,000,000 per year would likely have already found a treatment for MND? If somebody can justify that funding decision I would be happy to take on board their ideas. The only consistent response I ever seen to see if it's a woman's right to have children.

Keith

Steve
1st September 2014, 18:29
It just shows how much of an emotive issue NHS funding is, I'm sure the parents of the lad they took to Spain at the weekend would make a compelling case for having proton beam therapy at £100k a pop.

I don't envy the person or people that have to make these kinds of decisions. It is enivitable that people will miss out.

I personally think letting couples having 2 goes at IVF on the NHS before having to go private is a fair compromise.

The big question is will this sort of funding make a huge difference to research? I fear not, it might take the M to be a Bn before the top scientists and pharma take notice. That's why I think the awareness is equally important.

ccinjersey
1st September 2014, 18:43
You really are missing the Big Picture, Big Red.

You seem to have a very narrow and one sided view of life Keith. Will say this though, thank god you don’t have a seat on the board of your NHS….and thank god I live place where the ‘rights’ and ’entitlements’ of patients are respected, and unable to be denied by those that share your views.

I think its offensive how you can sit in judgment on illness you believe are relevant and those that are not. You seem to be obtuse in not realizing that infertility is indeed contributed to illnesses, and all other realms of conditions.

Again as I said before, clearly you seem upset and angered by the where and how your NHS spends its money. Maybe you should write a very strong letter to them along with your suggestions.

Curious to know, in your world are those suffering from alcoholism and drug addiction ’entitled’ to be provided with treatment from your NHS funds? Or are they not worthy of this funds because after all they chose the drink, and picked up the drug. Or is it now life threatening enough to be allowed the privilege of treatment ? Before you say something obtuse, let me say for the record, both of these illnesses have been scientifically proven to be just that, ‘illnesses‘.

I never before been so happy to pay out of my a** for my health insurance.

Maybe we really are what the world seems to label us as; ‘Those Entitled Americans” :)

CC

bigredkeith
1st September 2014, 18:55
Hi Steve,

I don't know enough about the proton beam therapy but I have every suspicion that you're correct. Understand your sentiments completely regarding the decision makers, not an easy job, and not one that most people could do dispassionately. And I'm sorry to say a lot of the decisions on subjects like these are made from a position of empathy.

A recognised your opinion on allowing two free IVF treatments, others have said four but most say keep to the current five. I just want somebody to tell me why it should be free after all. If it's successful parents immediately get maternity leave, paternity leave, the child is born they then get child support. Often with multiple rounds of IVF you're talking twins and triplets, maybe the answer is if you have IVF for free on NHS you have to give up your child support.

My points being, I guess, if the state pays to get you pregnant should the state also then be responsible for paying you money when a child is born to bring it up? May be a another answer would be, you get the treatment for free, and if it's successful you have to pay back the full cost. There are lots of potential alternatives I just don't think that demanding the status quo where the state has to pay vast amounts of money to get you pregnant is the correct use of that amount of money.

Keith

bigredkeith
1st September 2014, 19:08
Tell me CC what document is it that says you have a "right" to parenthood, you have no such guaranteed right. This is the kind of closed loop closed minded arguments that allow the NRA to continually argue that duck hunters need high powered fully automatic machine pistols and assault rifles to go hunting. Now that's a "right".

Keith

ccinjersey
1st September 2014, 19:13
Better yet Keith, show me the document that says I don't.

Your right, I learned years ago it's impossible to have a conversation with people that can only see life in black in white.

CC

Steve
1st September 2014, 19:13
I think the danger is we are taking the thread OT slightly by going into the whys and where fors of IVF. CC makes a good point that there are lots of examples of the NHS treating conditions that could be debated. You also need to weigh up the future cost of treatment, sending overweight people to slimming clubs being a good example.

bigredkeith
1st September 2014, 19:19
And as for your Health Insurance, remember almost 10 per cent of your population can afford Health Insurance which I'm sure you will admit is a price well worth paying to keep infertility treatment funded on your insurance. It's your country, they your legislators, it your insurance, I completely agree it's up to you to do with your system if you're happy with its fantastic.

As for me sitting on the board of my NHS Trust, it's not the NHS Trust that makes decisions on the appropriate use of experimental procedures it's NICE. And fortunately or unfortunately depending on your point of view they do make a pounds and pennies decision in a completely dispassionate way. They have no empathy whatsoever and as a result the public are often up in arms, women are agree with their decisions, but they're there to make them.

Keith

bigredkeith
1st September 2014, 19:40
I do agree Steve we are going slightly off topic. And yes there have been many a debate on the efficacy of preventative Health Care, I personally think it's a great idea alcoholism for example can be treated with medication and therapy one is no good without the other and the cost savings to the NHS in the widespread use of gastric banding is already showing benefits. As to the subject of scientists saying these are illnesses, the addictive gene has been shown to be a major contributing factor in many of these debilitating illnesses. Should the NHS be spending money on treating them of course the financial benefits to treating the disease is early are clear to see.

Can we apply that same argument to IVF? If it cost £50,000,000, and then 7.5 million in paternity a maternity leave and then a further £165 million in child support I say again where's the financial benefit to the NHS in giving this treatment away for free? That's all I'm saying, I'm not denying anybody's right to have its, I'm not saying infertile couples should either remain infertile or adopt, and simply saying why aren't we charging for this service as they do in America?

By the way CC, that's the point in America you don't get it for free if you haven't worked hard enough to pay for the insurance you don't get it because you don't have a state that willing to pay for it.

Keith

bigredkeith
1st September 2014, 19:49
Better yet Keith, show me the document that says I don't.

Your right, I learned years ago it's impossible to have a conversation with people that can only see life in black in white.

CC

The thing is CC you have something called a bill of rights it encapsulates every right you have in your society to lawmakers have seen fit to a great many amendment to your bill of rights to extend those rights even further. The only problem with that is that limit your rights to are expressly permitted within that bill and its amendment.

If it ain't in their it's not a right it's a desire and they're not guaranteed.

Keith

Graham
1st September 2014, 20:01
For any Ice Bucket Challenge onlookers viewing our discussion, I can only apologise. We do appreciate your contributions and for those of us who do have MND, are trying to suggest ideas that our MNDA can pick up and run with.

Steve, your suggestion that the funds could be used for foreign travel and treatment is a good one. USA has several treatment centres.

ccinjersey
1st September 2014, 20:09
Please don't apoligize for me Graham. I said my peace, and stand behind my convictions.

Will say it again 'Cheers' to Peter Frates and his friends for the outstanding and amazing work they did, in bringing awareness and the funds they are raising :)

CCxxoo

bigredkeith
1st September 2014, 20:57
Graham & Steve,

Thanks to apologise for me Graham, I do sometimes get carried away and forget that these can have conversations can sometimes be intimidating to others. Consider me spanked:rolleyes:

Travel overseas for treatment is a superb concept, I think I remember there is a programme within the make a wish foundation that sometimes can make up the difference between what available as a grant and was required for travel costs. Not sure if it's still in operation but either way I'm sure if the MND association could come up with the cost of the actual treatment in say the Mount Sinai project of brainstorm there could be other avenues available to meet the travel and accommodation costs.

I think with the number of the U.S. projects, particularly brainstorm, a figure in a double blind study at the moment so nobody knows who's getting the placebo, which makes it heck of a long way to go to not get the treatment. But then there is the concept of treating patients from the UK outside of the study protocols, but I think that may have to get done in Israel whether phase one study took place. Either way for good idea and certainly better than the prospect we have a the moment.

Keith

Steve
1st September 2014, 20:59
I didn't quite suggest that Graham, I was using it as an example of difficult decisions regarding treatment vs cost.

I totally agree with youvr comments about being grateful though.

bigredkeith
1st September 2014, 21:10
£6,000,000 raised so far. Amazing!!!!!

ccinjersey
1st September 2014, 21:53
Consider yourself spanked indeed Big Red. At least that's one thing we can agree upon :)

CC

john
1st September 2014, 23:24
Keith,

Sorry to chime in late but I have had a full day and have just caught up on this discussion.

Surely the point about infertility is that it is a medical condition which affects some members of our population. That being the case then after nice have done their cost/benefit analysis then the condition is treated in the same way as any other medical condition if they are happy that it meets their criteria in the same way as any other medical condition and it's treatments are evaluated. The fact you don't feel it meets the necessary criteria believe it or not is totally irrelevant and thank god you are not in the position to take those difficult decisions!

In case you are unaware motor neurone disease is an illness devoid of treatments therefore it matters not one jot if there is £50,000,000 or £500.000,000 spent by the NHS on providing ivf treatment to people who otherwise would remain childless. If this money was not spent in this way nobody would receive any treatment for mnd.

Research is not so far as I am aware the responsibility of the clinical commissioning groups who provide all the hospital treatments in the UK . It follows therefore that the money spent on ivf treatments is not making any impact on the drive for a treatment or cure for mnd.

I am not sure why you have specified this as an area where the NHS should not be spending it's money. Could it be because it is a condition which has never affected you?

John

Graham
14th September 2014, 11:45
Hi John,

Please would you enquire of your American friends to find out their views on the best use of the Ice Bucket Challenge windfall?

Regards

Graham

john
14th September 2014, 13:27
Hi Graham,
They are incensed about the situation. The bulk of the money has gone to alsa and they are pondering over what they are going to do and will announce in November their decision. They usually put 27% of there annual spend into research which meant 73% went into other things such as help for sufferers raising awareness and of course admin. There has been a lot of pleas that the money given was donated with a view to ending mnd. They then revised the donor forms which has enabled individuals to stipulated how they wanted their donation to be spent. This was only after millions had been donated and so the cry then was that they should go back to all earlier donors to give them the same choice. They say this is an unreasonable expense so are not going to. There is now a petition asking that they share the windfall with other organisations more geared up to research but they have not commented on this. A petition was started to get them to put the bulk into research but this has struggled to get 2000 signatures including mine .
Personally I think it is insoluble in that there are not hundreds of unfunded projects out there and you cannot just manufacture them. There was a recent blog from someone on the mnda research staff saying they are using engineered mnd cells to test every known drug in existence to see if any can make an impact on the disease or refine an existing drug to make a difference. I would sooner see the money retained to fund promising treatments as they come along rather than wasted on projects that get over funded just to spend the money.
I would also like to see some serious research carried out into protocols such as Ray's to see if his success can be replicated. If the medical profession could suppress their disdain for supplements and vitamins and approach a trial with an open mind they might be pleasantly surprised with the outcome.
John

ccinjersey
14th September 2014, 16:36
I think your right John. Only so long they should be allowed to continue researching the same old research that’s go nowhere fast. Move on. Lack of funding can no longer be an excuse now nor should be an accepted as one.

Personally I don’t think the ALS or MND organizations have made enough noise over the illness they represent. No one knows better then them,other then those suffering with it, the devastating magnitude of what an illness like this one this is really all about. There is a reason it’s labeled the ‘cruelest’ yet society has been in the dark about it for 100 years. That alone is an injustice to those suffering.

You hit the nail on the head on another post John when you stated this illness needs a Champion. Your right it does. Champions that know how to get in there and fight fire with fire, demand, be loud and obnoxious, and be just as powerful as the powers that be.

Those suffering with this illness are in no position to do that. Peter Frates and his friends found a miraculous way to bring the money to the table for ALS. It’s now the responsibility for the ’powers that be’ to find the treatment/cure and assist the needs of those suffering with this illness . Nothing less then that should be accepted or tolerated. It’s really a simple clear path to take. Otherwise in my opinion it’s money squander, and just more wasted time and energy on bureaucracy.

CC

boreham1
14th September 2014, 20:51
My friend at work did it and then realised he had sent the money to McMillan !! lol

marieline
15th September 2014, 04:50
Hi CC, I recently learned that a gentleman in Queensland suffering with MND had founded his own association and is fund raising to fund researches. I have not personally followed his story but apparently he is stepping on a few toes. I personally applaud him for having the courage and determination to do this. He may just surprise us. A radical just like our Ray, bless them.

Cheers
Marieline

Trevorhb
15th September 2014, 11:36
I have to speak up for the MNDA, the help and support we have had from them has been very good. Research is necessary, but so is support for those of us who are suffering. They do both very well in my opinion.

ccinjersey
15th September 2014, 13:47
Hi Marieline

Good for him!! Toes need to be stepped on with an illness like this. There is no time for politeness when time is of the essence in racing for a treatment/cure. I don’t think great conquerors are polite, they are courageous and loud, and we know for sure this b****tard illness needs to be conquered and destroyed to be the vision of mnda ’a world free of mnd’

John has a friend as well doing his own research with elevated free cooper levels in the body, and apparently getting results with a medication called Gluzin. Ray has his supplements as well as Dr. Tedone. Those experimenting, and conducting their own research on their own time and money that are getting some form of results should be at the very least acknowledged and recognized by the medical profession as to what they are doing right, and the science behind it of why it is helping.

CCxxx

pete
15th September 2014, 19:35
Hi CC,
It's a nice thought , but knowing what big companies do best, and it isn't giving credit to individuals who are trying to find a treatment and the reason is simple ,as the individual has found things worked for them in no way does this guarantee it will work for others, but for many it gives hope at least where none exists from the medical fraternity, so can only be a good thing .
I don't know if you have seen the MNDA video stream, but I was impressed by much that was said, but sadly it was dashed by the half hearted response to a question regarding TV advertising, and as usual the first remark was how expensive it is, and that theme was not well received ,it may well be the case that it is expensive but the reach into the public by TV isn't going to be matched by flyers and leaflets or posters , no matter how colourful they are, if the present publicity guys are afraid of approaching the TV companies I thing we may need someone who has a bit more vision and it needs to be done now not after months of meetings and umming and arring, now while we have some chance of getting more public awareness, no excuses you have the money now use it.

Graham
15th September 2014, 20:18
Hi John,

Thanks for the update from across The Pond. Sorry to hear of the upset but hopefully something good will be announced in November.

Research can take two forms, academic or applied.

To date our MNDA has wholly focused on academic research, maybe quite rightly. The extra injection of research funds would be most usefully applied making the best MND treatment available now, better.

ccinjersey
16th September 2014, 13:54
Hi Pete

Sad, but true. It’s just insult to injury to speak the words that it’s to expensive when 100 million dollars has been raised. I will say the ALS organization in the US are a quiet bunch. I can’t recall ever hearing a beep out them growing up or as an adult, but I clearly remember the Jerry Lewis Telethons every year and those suffering with MS, what the disease is and what it did to those stricken with it. What seemed like a one man crusade, still no cure but no longer a death sentence.

To me it always goes back to the squeaky wheel gets the oil. A simple strategy, make enough noise, refuse to go away, bring awareness, be relentless, strength in numbers, use social media, and eventually the ’powers that be’ will have no choice but to pay attention, and take action when enough pressure applied.

Agree Pete, spend the money to reach the masses, and if need be bring in those with a broader vision.

CCxxx

pete
16th September 2014, 20:18
CC,

It's a fact that most of us had never heard of MND , while I was growing up and unless you or a member of your family were directly affected . And in all honesty most of my life very few cases where ever known about, only Steven Hawking became the public image of this disease, and that shows how little they care to allow only one man to be pretty much our only media contact.
I wonder just how many of the membership need to pass away before we get to a value for money advertisement .i find it totally
Amazing just how many cancer adverts we see every day, all i hope is we will get someone who actually convinces those who hold the purse strings ,that unless we maintain our recent rise into the public eye ,please don't miss this opportunity to show the public that no one deserves to end our days by such a cruel killer that so few know about .or until they become members !!.

ccinjersey
17th September 2014, 02:30
Oh my goodness so very true Pete, and that alone is such an unfair injustice to those suffering.

Now that they have the windfall what will the excuses be?? Just hope they will no longer be accepted and tolerated. Your right about Stephen Hawkins he may be the face of this illness, but in my opinion he is not the Champion John speaks of, I don’t believe that’s his role or his way. We know Lou Gehrig suffered and died from this illness, but that’s all we know.

The dirty details of this illness remains in the dark to the average joe schmoe. What angers me the most is that the medical community knows all this illness entails, and yet there is no sense of urgency coming from them to put funding and resources behind it. If they were, they as well were being awfully quiet about it. The organizations that represent this illness have kept themselves in the shadows as well from enlightening and bringing awareness to the public, and demanding more from science. Why is that??

Maybe they can blame it on lack of resources and finances, but that’s such a pathetic excuse, you would think in over 100 years significant funding could have been found. Let’s hope as you say they will take this opportunity now to showcase this illness and push hard for the long awaited treatment/cure without letting another 100 years go by with no treatment and the money foolishly wasted.

CCxxoo

marieline
17th September 2014, 03:19
Hi all,
Recently i attended this session with a team of MND expert. the turn out was phenomenal both by sufferers and carers. I supposed that we were all hungry for some good news. Listening to the experts, i felt a certain disconnectedness, resignation, no sense of urgency. They were just doing their job. They probably are so used to seeing our changing faces file through their clinic, hospital beds and what not. In the end you just get used to it and they probably just get run down themselves. One of the expert is still working on the SOD 1 mutation, and by now 3 other genes have been added in the mix. These dedicated people probably never lost a close friend or a family member to the illness. If they do not understand the struggle how are they ever going to feel the motivation, the great sense of urgency?
Don't get me wrong, in Australia currently there are research being done on Zebra fish, algae etc, personally i feel it is just money being dunked. Like CC said, in a hundred years all we have is reluzole which claimed to extend our life by 3 months, go figure! We need a rocket scientist or perhaps devine intervention.
Best wishes
Marieline

Bilando
17th September 2014, 08:08
Gd morning to you all,
Having followed this thread with interest I would like to make the following points. The trustees of the MND association (UK) bring to the table personal experience of MND (either themselves or close family) as well as their professional experience. They are volunteers who have made the MND association very successful financially when compared with other UK based neuro charities. I attended the recent AGM and researched the trustees in advance. I had the opportunity to talk at length with two of them and I do feel confident that the association is well managed. Sadly we have Huntingdons in my family and my experience of the HD charity is that they are ineffective and compare badly with the MND association in the support that they provide. As for advertising on TV and a comparison with the UK Cancer charities compare the funds available to both charities and you will find your answer. The IBC has seen a lot of TV and radio exposure equivalent, we were told, to £ 13 million. I am not sure that spending the very limited resources of the MNDass on TV adverts would heighten awareness of MND significantly. The MND association is promoting campaigning as a result of the IBC targeting both GP's, MP's and candidates at the next general election. Putting the collective energies of those living with MND and their friends and relatives into campaigning can only enhance the efforts of trustees, directors and staff at David Niven house.

Graham
17th September 2014, 11:40
Hi All,

On Sunday I saw Roger Moore talking of his close friend, David Niven. He did a compelling mimic of David saying 'I have motor neurone disease'. I .. have ... moto ... neur .. on . (sigh) .. dis. To which Roger said, 'You have a new Mercedes?' And they both smiled.

It is high time a character in Eastenders, Coronation Street or Emmerdale came down with MND. There is a rich diversity of storylines associated with this hyenas disease. Program makers just need to read the stories on this forum.

It would be a zero cost massive publicity event for our association too.

ccinjersey
17th September 2014, 16:21
I think it really comes down to lighting the fire under the butts of the medical profession, scientists and researchers. They hold the key to the treatment/cure in their hands. When significant funding of this magnitude lands in their lap they have a responsibility and obligation to those suffering, and those that donated generously to aggressively seek out a treatment. Someone or some organizations must ensure that they are held to it.

So true Graham. Public awareness can keep the spotlight shining. If more folks knew how those with this illness suffer and try to manage daily living with no treatment/cure in sight, people’s anger might fuel the fire. Even more so if they were made aware that it can strike anyone they love as well as themselves, it might be a wake up call. The cancers out there have a great campaign manager, because we all know about them, and their treatment options. Yet people are clueless to the disease that is the biggest, baddest ’cruelest’ one of them all ??.. Something very wrong with this picture.


CCxxx

Graham
17th September 2014, 21:49
Hi All,

Dr Brian Dickie's response to our question is on MND association's blog. It is worthy of a Horizon television program or Panorama Special. I will send a program suggestion request. If anyone is close to the BBC then please pull some string, pretty please.:)

Ebola has just tested their vaccine on a human, we are behind team!

Juju
18th September 2014, 11:36
This money jus HAS to go into research towards finding a cure or managing the condition so a sufferer can have a normal lifespan. Nothing else. Research. Research. Research.

ccinjersey
18th September 2014, 13:39
Hi Juju

Lets hope the ‘powers that be’ think like you, and go full force with this funding to exactly that. Don’t forget those suffering as well, there is plenty of money to assist them in their day to day daily needs. After all as the medical profession likes to remind us this is an ’orphan’ illness considered ‘rare‘. That being said there is more then enough money to spend on helping the ‘rare; victims of this disease in having their needs met when needed for better quality of living.

CCxxoo

pete
18th September 2014, 18:45
Hi Graham,

Not being frivolous , but unless your Muslim or Scottish the beeb won't be interested in anything as they seem fixated on those two subjects at the moment.

Artmart
20th September 2014, 12:01
Hi all

Taking Graham's comment:


It is worthy of a Horizon television program or Panorama Special. I will send a program suggestion request. If anyone is close to the BBC then please pull some string, pretty please.

If there was a way of getting the attention of someone in the BBC, or elsewhere, are there those amongst us who would be willing to get involved? I ask because, if we are serious about this, there is someone who I know from years back that I could try contacting, no promises though so don't get too excited:) Over to you....

Arthur

Graham
20th September 2014, 12:42
Hi Arthur,

There is this window of opportunity on the back of IBC.

Horizon did a program on Ebola recently. The world's focus has been turned to resolving Ebola. Zmapp has been fast tracked and just last week a vaccine was tested on a human at Oxford.

We must maintain momentum and I am 100% committed to our project.

There is enough material in Dr Brian Dickie's blog to make a Horizon program. Also there were fascinating animations presented at the last Saturday's AGM.

There are inaccuracies in Dr Brian Dickie's blog however. BrainStorm and Neuralstem are closer to market than suggested in his blog and BrainStorm do not inject replacement motor neurones.

I am sure that if we all collaborate, we can put together a good show!

Artmart
20th September 2014, 13:35
Hi Graham

Ok, here goes..... May take a few days though, will let you know.

Arthur

Graham
3rd October 2014, 13:59
Hi All,

Received a letter from our MNDA explaining how the IBC money had been spent and giving options on how I could choose to spend the rest. Trouble is the option I want was not an option.

I want our MNDA to assist the best treatment option of BrainStorm or Neuralstem to start phase 3 trials in the UK.

Andrew
3rd October 2014, 14:22
Hi Graham,

You can have your say / put your suggestion in the 'other' section of the survey, which is towards the end.

Alternatively, I can feed it back to our team directly, along with everyone's suggestions on here, if that is of use.

Best wishes,

Andrew

Graham
3rd October 2014, 15:04
Hi Andrew,

The option of a phase 3 trial here in the UK, from a major therapeutics company listed on the NASDAQ specialising in stem cell therapy who are demonstrating good results in combatting MND, ably supported by our MND experts here in the UK would be hard to resist for the majority of us,

Please can you feed back the suggestion. I realise that some heads may be required to be banged together, speaking figuratively of course, to make it a realistic option. However our forum campaign will work with the MNDA to make it a reality.

Andrew
3rd October 2014, 15:09
Hi Graham,

Not a problem. I will make sure your comments are included in the feedback from the survey.

Best wishes,

Andrew

Graham
3rd October 2014, 15:33
Hi Andrew,

You miss my point. The survey is flawed as the option we all crave was not presented on the survey.

Option 1:
A phase 3 trial here in the UK, from a major therapeutics company listed on the NASDAQ specialising in stem cell therapy who are demonstrating good results in combatting MND, ably supported by our MND experts here in the UK.

Please ask for the survey to be redrafted with the option above as Option 1.

Regards

Graham

Andrew
3rd October 2014, 16:28
Hi Graham,

I will certainly ask, but I don't think it will happen.

I will make sure that your suggestion is fed back to the team collating responses.

Best wishes,

Andrew

Artmart
8th October 2014, 10:29
Hi Graham

My hoped for "contact" has been in touch but they are not in a position to help out directly. What they have done is given me a pointer as to where to target within the BBC, C4 etc but no specific names. I'll PM you so we can pick this up offline.

Cheers

Arthur

Graham
8th October 2014, 12:41
Hi Arthur,

I have emailed you.

Regards

Graham

Night walker
8th October 2014, 12:58
U
Hi Graham,

I will certainly ask, but I don't think it will happen.

I will make sure that your suggestion is fed back to the team collating responses.

Best wishes,

Andrew

Hello Andrew,
If they will not redraft the options as Graham has stated can you ask them to respond with the reasons why please?
Do you need a ballot from all the forum members to say we want the right to try new and innovative treatments to try to stay alive as and when they pass the safety test and the one Graham has stated is at the top,of the likely charts and we would like the influx of ice bucket donations to be a huge consideration enabling this.
MNDA are fronting the I do not want to die without a voice campaign, so please be our voice and front this forum as we all have come to trust you and we do rely on you to,keep this forum safe and intact. Please obtain a response one way or the other but not just a no.

Please try for us.

Thanks
Sylvia

Andrew
8th October 2014, 13:22
Hi Sylvia,

The letter was sent to all members of the MND Association and gives the opportunity to prioritise a series of options including research into a cure, expanding the care centre network and better services for carers / young people. There is also room to put forward your own suggestions (just like Graham has done).

I promise to pass on the ideas of everyone on this forum, and have assured Graham that his suggestion will be considered, alongside all the other options put forward from carers, volunteers, people with MND etc.

Please feel free to DM me if there is anything you'd like me to suggest in private.

Best wishes,

Andrew

Artmart
23rd October 2014, 16:28
Hi All

As you will have seen Graham and I took this discussion offline and the result of this is that I contacted Philippa Sillis, who is Head of Communications at the MNDA. I basically summarised the views from within this thread regarding the suggestion of trying to get media interest in following up on the back of the IBC and whether the MNDA would be supportive of this. Philippa's reply is published below with her agreement and for me the key elements to note are the confirmation of the strategy that the MNDA has in respect of the IBC funds and that Philippa is keen to pursue gaining the interest of a national broadcaster to create a documentary in support of the views previously expressed in this thread. To note here please that Philippa is happy to be contacted by anyone who would be prepared to participate in any such documentary and, in addition, Philippa is keen to start collating a list of MND sufferers who would be prepared to share their experiences to form Case Studies that the MNDA can use in the future. Philippa's e-mail is philippa.sillis@mndassociation.org
if you feel you can provide input for either the Case Studies or a future Documentary should one become possible.

I'm happy to keep in touch with Philippa to keep up to date with progress and co-ordinate any views from this Forum as to what the "hook" to get the relevant national broadcaster on board might be - let me know if you have a view (as I'm sure you will:)) but please be clear that a Documentary should not be seen as a foregone conclusion at this stage.

Arthur

================================================== =============

Dear Mr Bloomfield

Thank you again for your email and for sharing the forum thread with me. A quite astonishing range of topics and ideas covered but what came across very clearly was a sense of urgency for action so I would like to tell you what we are doing as well as addressing your concept of a documentary.

Before I do that, however, there is something I’d like to say. I’ve only been at the Association for five months but I can already see both how complex MND research is and how painfully frustrating it must be for those in search of effective treatment. I was lucky enough to be at our AGM last month when I listened to Professor Ammar al-Chalabi’s research presentation. He explained both the amazing work that is being done and gave insights into why it can be so hard to find answers. If you missed it, or would like to watch it again, here is a link to it: http://new.livestream.com/eventstreamingcompany/mnda.

I would like to assure you we are absolutely rigorous in how we screen research projects and only agree to fund those which we believe will make a meaningful difference to our understanding of MND, how to improve care and how to beat it. We know it is slow work but we really try to maximise the ‘bang’ for the ‘bucks’ people so generously give.

We have already announced that we will be spending over £1million of the Ice Bucket Challenge money to secure full funding for research projects aimed at understanding the causes of MND, the processes that lead to motor neuron degeneration and the development of new approaches to treating the disease.

We have also been giving careful consideration to how the rest of the money should be spent. We will principally be guided by our strategy (which was informed by members) but we felt it was also important for members to have their say on this specific subject so we recently sent out a survey. If you didn’t receive a survey, please let me know and I will arrange to get one to you. The survey closes at the end of the month and we hope to report the findings in the latter half of November. Our Board of Trustees will take these findings into account when making their decisions about how the additional funds should be spent.

You make a point about emerging treatments, including stem cell therapies. We publish the latest information we have on our website, which you can read here. If you have a personal interest in this area, you can speak to our research team for more detail – you can ring the Association on 01604 611880 or email research@mndassociation.org.

It may also interest you to look at the ALS Association website. In the States, over $100million was raised and their website also gives information about projects that this phenomenal sum is allowing them to undertake.

We are using the increased awareness that the IBC has given us in a number of ways. We are engaging with many more people through social media, which is helping to spread our message. We are working with a national broadcaster on a programme that will feature a character with MND – it is due for broadcast next year. (I hope you will appreciate that I can’t give details at this stage but I am 100% certain you will have heard of the programme!)

Speaking of the media, we plan to start targeting national media in mid November when they are planning their ‘review of the year’ features so we can rejuvenate the MND message in the media at the end of the year. We are also starting to think about Awareness Month 2015 and how we can maximise exposure through that. And in the interim we are always working on stories with national media. Just today I heard of an inspiring story that I hope to pitch to a few lifestyle magazines next week.

I think your idea of trying to pitch a documentary idea to a national broadcaster is a good one that I would like to explore further. We will need to think carefully about a ‘hook’ – for the media it’s all about the hook.

You mention that a number of people would be interested in being featured as case studies in our work. As it happens this is a project that I have started since I have been at the Association – to build a library of case studies of different types of people to help us spread the MND message. If you or anyone else on the forum would like to contact me direct I would be happy to discuss. I should just put a quick disclaimer on that as I may not be able to use everyone’s stories! But I will promise to respond to anyone who contacts me.

With best wishes

Philippa

Philippa Sillis
Head of Communications
Motor Neurone Disease Association
PO Box 246, Northampton, NN1 2PR, UK
DD: 01604 611877
Mobile: 07872 161672
philippa.sillis@mndassociation.org

www.mndassociation.org

ccinjersey
23rd October 2014, 19:59
Good for you Arthur and Graham!! You seemed to have found a very ambitious woman who sounds like she has a sincere understanding of the plight of those suffering, and urgent need for a treatment.

I hope she can put her ideas and concepts into real action, and keep the IBC awareness in the forefront of those in your country and hopefully mine, bringing forth a treatment/cure sooner then later. She also sounds quite sincere in bringing a voice to anyone here suffering that wants to be heard. There are so many amazing brave souls here, it seems like now would be your time to shine on :)

Go for it!!
CCxxooxx

Graham
25th October 2014, 21:44
Hi Arthur,

The 'hook' could be SAVING MAGNUM, in TV talk.

He is suicidal, see the 'A Cruel Disease' thread in 'Introduce Yourself '.

There is hope in the various promising therapies being trialled. But is Magnum and the rest of us going to be denied access and left to our fate?

Your thoughts?

Regards

Graham

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