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jadedjohn
2nd February 2012, 19:11
I know call me a heartless B******d but all I've heard about today is cancer, it's on the write stuff, then a tv advert for mac Millan nurses, then on the local news he lit goes on....

I've tried getting in the media, but not managed to get beyond local tv, and others have on here, but that's not done much.

I'm not sure the purpose of this post so it's just a rant really

John

pete
2nd February 2012, 19:33
Hi John,

I can understand you frustration at the amount of adverts that relate to cancer and the organisations that support patients with the terrible effects of that disease, but i think only recently ,MN had there chance and blew it , no reflection on Sarah .but having seen the advert , It did nothing for me and i suspect very little to the millions out there watching it ,To shocking and in your face was how my wife described it , It goes without saying we all know about MND and what it does to people ,there isnt a day i look at the TV and see money being wasted everywhere , but it still gets wasted no one cares, until it comes close to your home or worse into our little world , Until you see it and experience this condition and relate that to the population in a world pretty much concerned only with celebs and Bankers ,i think we are screwed mate

regards
Pete

Toppers
2nd February 2012, 20:40
John you are so right, I have always said that I would have rather have had cancer as there is more chance of recovery than having this. It maybe a harsh thing to say and people who have had it will not be happy but how many people do you know have had cancer and got better and belive me I have had family who died from cancer but a lot have got better and in remission, it would be so nice if people raised as much money as they did for cancer and as you say get the coveridge that cancer does.

Sorry about ranting on but sometimes it needs to be said.

Pete

teynhambees
3rd February 2012, 09:48
John,

I'll try and restore your faith in human nature I placed a just giving page on my face"ache" page as i call it and within 2 days its already at 117, not huge i admit but some of the donations are from complete strangers and anon. donations.

Last evening, my lovely wife, Ged has been approached by a chap locally who runs boot camp days and wants to run a fund raising day as his partners aunt passed away from MND. Unfortunately I stumbled across a house of commons debate in 2003 and i'm pretty sure that all the things raised then are still as bad now as then but there are some admit small amount of population who a decent and willing to donate to help just a shame the profile isn't or doesn't seem to be as high as Cancer or some other causes.

Once i'm back at work believe me I will make sure that my media dept. does something to raise awareness and shake the tin! Understand the rant and i agree shame it doesn't get a higher profile i'll certainly try via my workplace.

Bright side you had a nice sausage sandwich!

Scott

pete
3rd February 2012, 11:03
Hi all,

just been reading your post Scott, and well done ,for doing things positive, I beleive , its pretty much down to numbers again, MND is and i hope always will be a relatively small ratio of the population,, and being just that ,despite what we all know about the condition ,very few folk have any idea of what it is, or what deavasting things it does to the ones who join this small percentage of the population, Cancer on the other hand, as i know only to well is known to all, they fear hearing those words as many do have to hear those words i think at last count it was around one in four, I know first hand having lost my brother ,mother ,father , mother in law and father in law ,over the last twelve months to the horror that cancer is , and having seen how they ended there lives, well i cant knock the support they where given.

pete

elle
3rd February 2012, 21:54
I totally agree with you pete i have a sister who is in remission with secondary cancer, and witnessing what she has been through they need and deserve as much support and funding as any other charity plus you don't hear that there ceo's get a substantial pay rise, maybe if mnda took a cut in there pay it would pay for publicity and aid mnd awareness plus the cutbacks would not affect us the sufferers that the charity is meant to be for so before cancer support is knocked people ought to take a closer look at the big picture of what our own charity is doing to support publicity:mad::mad::mad:

pete
3rd February 2012, 22:44
Hi Elle,

Good to hear from you , hope your keeping well, ? I can well understand John,, he has tried for so long to help the cause and had in his own words had limited effect, Thats no reflection on him, But to get to where the likes of Cancer support is now ,is going to be a real struggle ,as i said before ,MND is a silent and destructive condition , giving no mercy to sufferers,What really gets me is even the medical proffession cant even agree if its a terminal disease ,and thats pretty much carried into the benefits area too, and from reading EMT's post .it seems the insurers are not much better.mind you never expected them to pay up without testing all the clauses ?

elle
4th February 2012, 01:41
Hi pete, i'm not too bad at the moment,
how are you? Iv'e been told i need to go to ent to have camera down my throat into my voice box, as they can't
understand why i keep losing my voice, iv'e not been on the forum much due to struggling with keyboard typing
my right hand/arm now going fast i have very limited use, my ot looking into help for me, i use a pen to help at moment but get a lot of paiin if i go beyond my limited reach, oh well just another stage of mnd i suppose don't know where its going next as it's took my arms and legs, not many places left, iv'e been reading
your posts and love your sense of humour you make me laugh keep it up sergie x elle x:):):)

Robert
4th February 2012, 15:15
Hey Elle,try a spoonful of raw local honey morning and night as it has natural anti- bacterial properties. Regards Bob

elle
5th February 2012, 01:50
Thanks for the tip bob, hope your keeping well,i will try to find a bee hive in all this snow, lol keep warm
x elle x:cool:

mik
5th February 2012, 09:43
Can't agree more with this topic, every time there's a break it's either a fat guy or a bloody meerkat selling insurance and a cancer advert. Now I know cancer is more prevelent but come on. It's like cancer is brad pitt, an A list celeb and MND is the 1st person voted out of big brother and couldn't be more Z list. Cancers opening the world cup and we are cutting the ribbon on a new aldi in some grotty backstreet town in Birmingham. That's how i see it but hey try and be positive our time will come!

Rachelg
5th February 2012, 11:46
Having had cancer myself in 1997 at the age of 27 I am of course forever grateful to all those that saved my life and Mark continues to support Macmillan each month with a donation. HOWEVER - even though I was very very poorly and hope of getting through it was slim - there was hope and it was keeping positive about that hope that got me through it.

If my Mark had been diagnosed with cancer instead of MND there may have been hope.

I am grumpy today after a very long, difficult night so Yep at this moment in time I "tut" at the amount of cancer coverage on tv. Sorry.

icingoncake
5th February 2012, 16:30
I don't know how this will sound so bare with me! I think it's numbers. How many people do you see at branches or in fundraisers that have been personally affected by mnd? When something touches you it leaves a mark and cancer leaves its mark on more people. I believe that given how (thankfully) few people are touched by mnd the disease actually has a higher profile than the numbers game would suggest...

all taht said, though, I think we can all agree that everyone always wants more coverage and cash going to research and the mnda.

Jenny

elle
6th February 2012, 00:20
A very sick tactless thread that should never have been started,
there should be no comparing of cancer, mnd, or any other disease
for that matter as at the end of the day they are all killers.

pete
6th February 2012, 10:36
Hi all,

couldnt agree more Elle, sounds like Sour grapes to me , How about all you heartless people instead of knocking sucess, and begin asking why we do not have the press and TV coverage, And direct your venom towards the ones who are supposed to be acting for you , I do not know how many MND sufferers there are at present ,but think even one in the population is one too many, but as things are with this country today and the forseeable future ,with health cuts and benefits cuts and NHS reforms ? . well do you think its going to get any better , what gets my goat is ,Our Dynamic duo in charge manage to find millions? of our money to finance new trains , and send a ship our one and only ship i think ,and a royal to p***s off the argies again .over what, a rock thats is thousands of miles away ,no benefit to us whatever ,add to that the huge costs in fighting wars that we can never win only cost the lives of so many young men and women ,for what ?, along with this how are you not knocking the TV ads that show almost daily about the poor little kids in africa and other counties that despite the hardships and skeletal kid ,the parents just seem to mange to look so fit and well and keep adding more to the population ? , No think we have more important issues here ,and would welcome your comments on how to improve things, not be so bloody jealous of people who have done more for there illness, so i dare you ,instead of moaning and berating others ,offer your constructive input , I await your commments

pete

Rachelg
6th February 2012, 12:05
I dont think this is a sick thread - its about honest feelings - I feel its a thread fuelled by sheer frustration. Like John, earlier in his battle with MND, my Mark did as much as he could to raise awareness of MND and raised thousands of pounds for our local branch in the process - but local press is as far as it got.

I think you are right Pete - its about number of sufferers and many many many people are in someway personally affected by cancer in some way and I guess thankfully not by MND.

My post perhaps should have said I tut at the amount of cancer media coverage in comparison to the lack of MND coverage, I certainly am not a bitter person. MND - "whats that then"? - how many times in the last few years have I heard that and that includes people in the medical profession.

I don't know the answer - I wish I did - but I am very interested in peoples views and feelings therefore did contribute to this thread - maybe I shouldnt have.

mik
6th February 2012, 13:33
I for one have no problem airing my views on this, as a high percentage of cancer, heart disease and HIV can be prevented by people themselves. I am not saying I am perfect but there are ways that a percentage of people could have prevented their illness themselves. As for the poor african children their countries receive huge sums of money every year not just from charities but international aid in general. If that sounds like sour grapes then color me bitter.

elle
6th February 2012, 13:53
Definatly sounds sour bitter grapes, how the hell do innocent children prevent cancer and aids.!!!

mik
6th February 2012, 19:48
If you had took a minute to read my post properly I never said all,a reason why people don't express themselves is because it always gets misread by someone and blown out of proportion. My last words.

elle
6th February 2012, 23:30
I still don't agree with any of your posts on this subject and i for one have no problem expressing myself,
and if you think it is blown out of proportion i think you will find the comments made on this subject has upset others as well as me, the comments were very insensitive, and totally uncalled for.

Jeannie
7th February 2012, 10:16
Everyone is entitled to express their opinion whether we like it or not.

http://1.bp.blogspot.com/_Mpa5mUYVWB0/TDR5eYvlmkI/AAAAAAAAEGA/BWBEiEPgT_U/s1600/chill_pill.jpg

miranda
7th February 2012, 14:17
As ever - Jeannie the voice of reason.

john
7th February 2012, 14:44
How bigs the container these come in?

John

teynhambees
7th February 2012, 16:29
All,

I've managed to get my local press the Whitstable Gazette, Kent to run a fundraising story and my own personal story for this week's edition and the photographer is coming this evening to take the photos of both myself and a complete stranger to us (personal trainer) who has offered to run the event and raise funds for MND. I hope that this raises our cause even its just for one week in the news!

The reporter wants me to keep her updated with not only my progress but any events we are running in the future! So, its one in our corner for a change!! p.s. my own just giving site has gone from 0 to 138.50 in less than a week.

Scott

G60dubber
7th February 2012, 17:59
How bigs the container these come in?

John

I'd be more worried that it's a suppository ;-)

john
7th February 2012, 18:29
Adie,
Couldn't decide if it was 250.000 or250,000 (must get some new glasses) - if the former thats do able if the latter it would sure make your eyes water!!!

John

elle
8th February 2012, 00:46
Great news scott,
well done keep up the good work and stay positive.x elle x:)

pete
7th March 2012, 08:04
Hi Brett

Can only agree with you , having lost several members of my family to the dreaded cancer , The comment made originally by a man who was frustrated by the amount of coverage Cancer gets in the press and media,He himself suffers from MND or ALS as you know it and in hindsight maybe it could have been worded better, its a case of expressed for the right reasons ,but sadly taken the wrong way by many folk ? .

ArtysArmy
7th March 2012, 10:17
Hi there, i understand how you feel completely!!! my sister does alot of charity work involving our forces and their wifes/girlfriends and she is now helping me with mine because unless its for the forces or for cancer its like no one is interested and it really REALLY winds me up. i know cancer is horrible and devastating and all but you can live through that and majority of them have a cure...THERE IS NO CURE FOR MND!!!! it really REALLY winds me up that no one is as interested in this as they are other illness's like cancer its just not fair!! sorry to rant on your post i just feel your frustration :)

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