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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

ALS v MND

45 replies

HappyAgainOneDay · 26/08/2014 19:12

ALS has notched up £30m or so, MND has £250,000. I just wondered if people in the UK realise the difference between the two. ALS - Amyotrophic lateral sclerosis - is the American version of MND -known in the UK as Motor Neurone Disease. If you donate to ALS it goes to the American charity. Nothing wrong with that if that what you intend but why has MND such a small percentage of what ALS has gained judging by the number of videos I have had to watch have been looking at.?

I really do apologise if anything I have said is incorrect but can anyone tell me - and the rest of us - anything different?

OP posts:
lunar1 · 26/08/2014 19:20

I donated to mnd, I think lots if the money here has been hijacked by McMillan. They are openly advocating giving them the money, which seems really underhand and makes me think next coffee morning I'll give some money to mnd instead.

ilovepowerhoop · 26/08/2014 19:22

because all the american celebs donated to ALS/thats where the challenge originated and in the UK a lot has been donated to MacMillan Cancer as that was the number most people have put up to text to. It wasnt until I googled what ALS was that I found out it was like MND and that the text number people were displaying was not for MND but for Macmillan. I had to investigate further to find out how to donate to MNDA instead

Nancy66 · 26/08/2014 19:23

MacMillan seem to have been much sharper with their marketing of this. I don't really blame them for seizing an opportunity

dancestomyowntune · 26/08/2014 19:23

Agree with lunar, although I kind of figure that the money is going to research and does it matter which side of the pond is doing the research? Surely they work together? I may be wrong of course!

BackspaceEnter · 26/08/2014 19:24

If the donation money goes to the ALS in the US and is used for research then MND with benefit from that, I would think so anyway. If anything then the ALS with 30m may be better placed for research and hopefully that will let to treatment options and fingers crossed a cure.

lunar1 · 26/08/2014 19:25

I think what McMillan has done is really underhand. It feels like steeling in a way.

BackspaceEnter · 26/08/2014 19:25

x-posted with dance.

Nancy66 · 26/08/2014 19:26

I don't think it's underhand. More people will be affected by cancer then they will b MND and, typically, people tend to donate to charities they associate with.

LiverpoolLou · 26/08/2014 19:29

Your figures are incorrect. The MND Association say they have received £1.2 million so far.

www.mndassociation.org/news-and-events/Latest+News/thank-you

MissOtisRegretsMadam · 26/08/2014 19:29

Maybe because America is much bigger than the uk?
It started there before it did here?
The celebs are multimillionaires who probably donate more than your fb friends?
I just think it's great that a less known charity is benefiting by so many people jumping on a bandwagon!

dancestomyowntune · 26/08/2014 19:32

But Nancy,McMillan already get tens of thousands a year in donations. They are one of the largest, most supported charities I can think of. The whole point is that mnd and als do not get that support, or the funding from pharmaceutical companies and sufferers do not therefore get the support and answers/treatment options that are much more readily available for cancer sufferers.

Nancy66 · 26/08/2014 19:36

MND were too slow off the mark though. It's a new media craze and therefore has a sjelf life - MacMillan seized the opportunity probably because they have better marketing people

I do take your point however

shitatusernames · 26/08/2014 19:58

I've been nominated to do the ice challenge, however I'm a wuss so will not be doing it, I have just donated a fiver though to www.justgiving.com/mndassoc/

trixymalixy · 26/08/2014 19:59

I donated to MND.

ilovepowerhoop · 26/08/2014 20:04

you can donate to MNDA by text too by texting ICED55 followed by the amount to 70070 e.g. ICED55 £2 or ICED55 £5, etc, etc (ICED14 plus amount for mnd scotland)

Gatekeeper · 26/08/2014 20:14

MND also; my Aunt died from this a few years ago; a horrific way to go...Sad

Kirsty40 · 27/08/2014 21:37

Nancy, you are totally missing the point. Macmillan get more funding and donations per month than ALS usually get in a year. Also, with cancer there are many treatments and many people are cured. With ALS there is no treatment or cure. If you get it you will die in 3 to 5 years and be horribly disabled for most of that time. For Macmillan to try to take over the ALS fund raising effort to get more funds for themselves is disgusting.

cardibach · 27/08/2014 21:42

I am also very annoyed about Macmillan's underhand theft of the Ice Bucket Challenge. It isn't just a 'media craze' it is an actual fund raising effort started by ALS. It didn't just happen. I think much less of Macmillan now and I have often donated to them in the past. Unfair. ALS/MND gets so little. I'm not sure how much it matters whether the money goes to America or the UK as it's all research.

Altinkum · 27/08/2014 21:47

This reply has been deleted

Message withdrawn at poster's request.

cardibach · 27/08/2014 21:49

That seems very unlikely to me,Altinkum. What an odd thing to think of simultaneously. It is pretty well known it started in the US for ALS, I'm afraid.

Bue · 27/08/2014 21:49

Altinkum how can two charities simultaneously come up with the exact same challenge? Hmm

Altinkum · 27/08/2014 22:00

This reply has been deleted

Message withdrawn at poster's request.

donkir · 27/08/2014 22:15

ALS and MND do not work together from what I gather. ALS test their medication on animals whereas over here it's illegal.

LonnyVonnyWilsonFrickett · 27/08/2014 22:20

Macmillan are a British charity and ALS are in the states though, so I don't see how they could have done the publicity together.

I think Macmillan have been a bit shoddy about this tbh. Think there's a big thread in chat about it.

LiverpoolLou · 27/08/2014 22:24

donkir all new medications in the UK have to be tested on animals before being licensed.