Ice Bucket Challenge & SCA

[jurgen]

Shouldn´t we have s.th similar ?

IBCh made people think about ALS

[SueMillman Partner Ataxia UK]

Yes, it would be great if someone could think up something to raise the profile of ataxia that could catch the public imagination in the way that the Ice Bucket Challenge has....... This is every charity's dream, but few achieve it!

What has been particularly striking about the IBCh is that the idea didn't come from the charities themselves - this was something that originated with supporters and was then adopted and promoted by the charities. Very soon Ataxia UK will have a new website and will be able to vigorously promote fundraising via social media so all ideas are very welcome!

[wobelyjohn in reply to SueMillman]

?

[jurgen in reply to SueMillman]

what do you think of a wobbly jelly challenge

[SueMillman Partner Ataxia UK in reply to jurgen]

Would this be jelly over the head???

[jurgen in reply to jurgen]

Yes, I think so

[wobelyjohn]

It is strange you should mention this as I had the same idea here is a coppy of the email I sent to ataxia uk but I never got a reply so I am starting to wonder if they got it

I have an idea that would both raise funds and awareness of our condition

You are doubtless aware of the publicity and funds generated by the alsicebucketchalllange an idea that has migrated from the usa and is very common it springs to mind the idea of preparing for release an ataxia snowman challenge so it could be ready for when the weather is favourable would be an idea. It goes as follows instead of posting a video of you/someone pouring a bucket of water over you for charity on facebook and nominating others how about the idea of posting a picture of a snowman you had built holding an ataxia uk poster [downloadable from the website for free but with a prominent make a donation link and a tiny skip this button ] anyone with kids [under 99] would be nagged into it then the competition of wanting to outdo people would start so it would both raise funds and awareness. If it were prepared it could be released in January and would be self publicising and if released via the ataxia facebook page would cost nothing.

[SueMillman Partner Ataxia UK in reply to wobelyjohn]

I'm CEO of Ataxia UK!

I'm really sorry you didn't get a reply. The idea sounds a good one....... if we get some snow this winter!!!!!

I will put it under the nose of the fundraising department and see if we can get ready for it! We would need a group of supporters ready to kick it off in order to get it going. Our new website - which will definitely be launched before any snow - will be a very good vehicle to co-ordinate such a campaign as it will have built in links to social media.

[memielou]

The Fight Ataxia Project in USA are trying to promote a 'Pie in the Face Challenge'. I have them as a 'friend' on FaceBook (Jonas Cepkauskas)... it's not as harsh as a bucket of ice but just as messy and funny. I don't think it has taken off so well as IBC worldwide though. Needs some promotion here, maybe?

Mel x

[SueMillman Partner Ataxia UK in reply to memielou]

Mmmmmm

When I met the Chief Exec of Parkinson's UK earlier this week he was talking about their initiative 'Pies for Parkinsons'. You can see examples here:

youtube.com/watch?v=pZ7rnZm...(Not working as expected?) He said it isn't doing terribly well!

In addition, there's been a real fuss in the charity world about MacMillan Cancer Support's attempt to 'steal' the Ice Bucket Challenge from MND Association and I don't really want to fall out with Parkinsons! So if our supporters want to do pies I don't have a problem, but I wouldn't feel able to promote this in the same vigour as we could a novel idea that no-one else was using.

[memielou]

Ohhh no... we don't want to fall out with Parkinson's charities do we, I believe there is quite a helpfull crossover with thier research and ours? Maybe we could do something through Childlife? a quarter of the awareness and funds is better than nothing at all? Thinking caps on again, I suppose...

Some of the tests the neurologist asks me to do... I find them quite funny and often think someone should catch me on film. Nose touching, tapping head and rubbing belly... although, I am 'comfortable' with my Ataxia, some people may find it a little insensitive?

Back to the drawing board...

[Hidden in reply to memielou]

I know what your thinking - I think.

It could be caught on film or HD and edited with music to a funky/classical mood, with fade in/out pictures of type of Ataxia.....

Just a quick thought

Let your imagination loose

[memielou]

Mmmm... I was thinking of it more as a challenge for both Ataxians & others, not an information documentry, more a bit of fun. Anyway, after more consideration, I think it's a pretty lame idea really,I don't think it would take off at all.

I like the Idea of the wobbly jelly over the head, something like that might work? Shame about the waste of food though?

[Hidden in reply to memielou]

It was just a thought.

No need to get all petty about it.

Good luck

[memielou in reply to Hidden]

Matelot-RN, I'm sorry. I didn't intend to offend anyone. In any case, if anything, I was trashing my own idea so if I was being petty it was firmly aimed at myself, nobody else. I'm just thowing ideas in the pot.

[babygirl123]

I like the wobbly jelly idea, something fun and messy gets peoples attention. Plus a lot of people on this site say that they are wobbly. So it fits don't you think??

[memielou in reply to babygirl123]

Babygirl123, I agree the jelly idea sounds great. MND/ALS chose being drenched in ice cold water as it is supposed to show people how it feels to have total numbness in nerves and muscles, even if it is only for a short time and that this is how sufferers of MND/ALS feel every day. Maybe we could challenge people to be spun around whilst blindfolded and then walk in a straight line, unaided? that might introduce people to the world of living with ataxia?

[babygirl123]

I don't need a bucket of ice to send my nerves daft, I know what cold does to your nerves I suffer from Raynauds in my hands and feet. A balancing challenge would be good, standing on one leg for as long as possible or something. Should raise some awareness of ataxia.

[berejena]

I did it for Ataxia

[berejena]

Sorry from Berejena

[Stanleyclan]

My friend and I were only talking the other day about the need for an Ice Bucket Challenge equivalent for Ataxia - and we can boast that 85% of what is raised goes to fund research (that was the main gripe about the ALS campaign wasn't it - that hardly any money actually got to do any good!) Definitely think the 'wobbly', 'jelly' , 'balance' ideas are a winner - think it really needs to stand out though - facebook etc seems to have gotten saturated with all these fundraisers lately. Something relevant but fun - thinking cap on!!!!!