purple ice buckets?
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- 23rd August 2014 at 8:39 am #1224leo vogelParticipant
40 000 000 US $. Up to yesterday. Well done ALS friends.
I think we need to invest in professional marketeers as well. And lots of MSA persons will have to come out of the closet.
Start shaking up your own network.
Leo.28th August 2014 at 7:29 pm #2856FredaParticipant
That’s a lot of dollars. No cruelty inflicted on the water either. All the other possibilities like buckets of worms seem a little unkind.
Freda31st August 2014 at 9:42 pm #2868leo vogelParticipant
the ALS ice bucket challenge has almost reached 100 million us$. That is serious money to invest in research.
Leo.1st September 2014 at 6:43 am #2869FredaParticipant
A hard act to follow.
Our local hospice volunteer newsletter is asking for ideas, It will not I think be the only organisation looking for simple, easy to administer ideas which appeal to people’s sense of “sooner him than me”
As Leo says – shake up your networks and see if some brilliant ideas fall out… and do it soon before everyone loses interest..
Freda3rd September 2014 at 4:03 pm #2876janelParticipant
I take the view that $40m going into research into ALS/MND is no bad thing as it is going to further understanding of the human brain and its disfunctions, so MSA may well be an indirect beneficiary.
The ice bucket challenge was one of those seminal, off-the-wall ideas that captured the imagination of the global public – I think the US Purple Rain challenge is trying to emulate it, but is a pale imitation. Still, good luck to them!29th January 2015 at 11:24 am #3150MelissaParticipant
We have an opportunity to get an article into the BMJ to raise awareness of MSA.
If anyone has an experience of delayed diagnosis (possibly referred to a Urologist long before a Neurologist) that they are willing to share, please contact Franca Tranza, Head of Communications at our HQ. Tel 0207 940 4666.
Thank you, Samantha.6th December 2018 at 12:47 pm #13886RichardRivasParticipant
Agree with you. investment is very important
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